Dear Family and Friends,
I am a weary traveller just back from Eastern Europe. It took 26 hours to get home and three airplanes. It was grueling but I am safe and full of thoughts and remembrances of an incredible journey, a once in a lifetime experience that I never would have guessed I would make.
Medjugorje is situated in Bosnia - Herzegovina and is truly in the midst of some of the most beautiful country I have ever seen. It is a green, lush valley, surrounded by high rocky hills. The people are war weary and it is obvious they have been through alot. Yet they are kind, welcoming and always smiling. These are Croats surrounded by Serbs. The ethnic cleansing that was inflicted on them has left each family scarred and bereft at the loss of loved ones. That is why it is a gift for them to have the Blessed Mother always present in their community through her apparitions. You can feel the spirituality of the place and they have opened their hearts and homes to pilgrims from all over the world. Pilgrims of all kinds: young, very old, every ethnic group, religious, and clergy, all are there to profess their faith, or to be called back to their faith, or to pray for someone or for themselves. It it certainly not an experience I had ever expected to have, and yet, it is the most perfect gift I could have been given.
I told my family that I prayed more in these 10 days then I have over the last 30 years. I travelled with a remarkable group of believers who looked out for me, felt the pain I carried, and supported my desire to help Dan. We were fortunate to have a Benedictine monk, Benedict, travel with us. He is the brother of Jim Neenan who travelled there with his wife Nancy, son Chris and his pregnant and beautiful wife, Leah. I cannot even begin to tell you the comfort of having someone like Benedict with us throughout, leading us in prayers, saying Holy Mass and blessing us and every religious article we purchased. In addition to the Neenans I was also kept company by our long time friends, John and Jennie Amato.
It will take much time for me to sort out all I saw, experienced and wrestled with. I felt like I had returned to the Church of my youth and there was great comfort in that. I would always joke to Dan - "once a Catholic, always a Catholic" - but I knew deep down it was not a joke at all. I was always a Catholic and now I have been given the blessings of the sacraments and a group of people who live their beliefs and support one another in the kindest and loveliest of ways.
I have seen hundreds of people lined up for Confession, groups of people, all walking with their Rosary in prayer, a church filled to standing room only from 7 in the morning till 10 at night. Pilgrims were hiking up Cross Mountain in bare feet over huge, sharp rocks, praying the stations of the Cross and meditating on the Crucifixation with pain and sadness in their faces. I have seen old people going up those hills and mountains and I have meditated on the power of faith to keep us going literally as well as figuratively. I have seen Visionaries and listened to their words, tried to read their faces and feel what was in their souls. I have heard birds sing all night, and then be magically silenced as soon as one of the Visionaries experienced the presence of the Blessed Mother, saw the sun spin and witnessed a bronze statue of Christ drop water from his leg (as it has inexplicitly done for years) as people placed their religious objects on the spot and then kissed the object reverently. There are stories too numerous to relate, that would indeed fill a small book, but a book nontheless.
I will say I was in a place that is wonderous, devotional, pulsating with a spiritual consciousness, and at the same time difficult, even very difficult, physically, emotionally and spiritually. I found the life of a Pilgrim to be a daily challenge in comforts and belief. But at the end of the journey, the challenges were forgotton and the faith remained. I believe in my heart and mind that I was in a sacred, holy place that is filled with the presence of the Blessed Mother.
With that belief I left Dan's cancer at Mary's feet. I climbed up Apparition Hill where Our Lady first appeared to the children 25 years ago. There one finds her statue and I carried Dan's written intention with me and left it there for her to do as she decides. I have heard requests ring out twice in grand Churches; requests spoken by my friends on the trip, asking for Dan's health , once in a packed and beautiful service at St. James in Medjugorje, the other in Dubrovnik, in an old and inspiring place where Father Benedict said Mass for our small group of wear travellers at the end of our journey. Both times I said Dan is in good hands.
So I will remember, and try to understand, and accept on faith those things that my mind is incapable of comprehending. And most of all, I thank Mary for calling me to such a place. It is hard to believe it was only last October when I was first made aware of Mary's appearances at Medjugorje, and her statute visited our house, and now I have visited the place where she first appeared and stood on Apparition Hill. We are all on an amazing journey.
Love, Susan
Monday, May 08, 2006
Thursday, April 27, 2006
A Journey of the Heart
Susan left this morning for Medjugorje. As I think we have explained previously, this is the holy site in Bosnia Herzogovina where there have been innumerable appearances by the Blessed Mother Mary. I said goodbye as she climbed into our friend, Nettie's, car this morning and headed off to the airport. I turned and drove to the clinic for my chemo. The two hour clinic visit gave me much time for reflection. This little bundle of energy we know as Susan is tromping off to Eastern Europe for reasons she can't really articulate. All she knows is she has been called. That's all she can explain. This much I know--when it comes to matters of the heart, Susan's compass has always been 100% accurate.
From my perspective her journey for me, for her, for us and for our family is but another humbling event of an incredible year. She is packing herself halfway across the world to deposit my disease at the feet of Mary and ask for my healing. She doesn't profess to know how this can occur, only that it can. The more I contemplate the journey, the more I realize it really isn't about outcomes. It's not about what she asks for or what she, or anyone receives. The fact of the journey says it all.
She has been nursemaid to me for many many months and has cared for me in ways one might only expect to occur much later in our lives. All done without complaint and with a depth of love that is palpable. This cancer has not just happened to me. It has happened to us--Susan, Cates, Julia and me. And now Susan has volunteered to carry my cancer overseas and ask that I (we) be rid of it. Symbolically she is carrying my blue wrist bracelet purchased from the Multiple Myeloma Foundation and intends to leave it there, symbolizing the depositing of my cancer for Mary to take care of. She also carries my meditation beads to absorb the energy, blessings, and spirit that pervades this holy place, so they can be returned to me fully blessed.
And yet, this is not really about any of that symbolism or what Susan might see, feel, or experience while in Medjugorje. Susan's intentions and her willingness to travel to Bosnia to ask for healing is more than enough, in itself. I am humbled that someone would venture so far to ask so much for me. I can almost feel her intentions as I sit in this quiet house. She has, of course, left me dinner in the refrigerator complete with instructions for preparation. She has filled the freezer with food for my mother's visit while she is gone. And she is no doubt thinking of me, praying for me, and asking for my healing as she flies across the Atlantic. The care I have received from this young woman I fell in love with so many years ago is beyond description. Her heart is bigger than anyone's I have known and I have often exclaimed that I am so fortunate to have fallen in love with and been able to marry the nicest person I've ever met.
My studies in meditation have taught me that spiritual growth and healing are as much about intention as they are about action. The deeper the wish to grow or heal, the greater the growth or healing will be, especially when those intentions are accompanied by action. Right now a woman full of great energy is flying through the universe heading toward Medjugorje with a deep intention to heal her husband and her family. A greater love I could not ask for or receive. Please say a prayer tonight for my Susan. Godspeed my love. Dan
From my perspective her journey for me, for her, for us and for our family is but another humbling event of an incredible year. She is packing herself halfway across the world to deposit my disease at the feet of Mary and ask for my healing. She doesn't profess to know how this can occur, only that it can. The more I contemplate the journey, the more I realize it really isn't about outcomes. It's not about what she asks for or what she, or anyone receives. The fact of the journey says it all.
She has been nursemaid to me for many many months and has cared for me in ways one might only expect to occur much later in our lives. All done without complaint and with a depth of love that is palpable. This cancer has not just happened to me. It has happened to us--Susan, Cates, Julia and me. And now Susan has volunteered to carry my cancer overseas and ask that I (we) be rid of it. Symbolically she is carrying my blue wrist bracelet purchased from the Multiple Myeloma Foundation and intends to leave it there, symbolizing the depositing of my cancer for Mary to take care of. She also carries my meditation beads to absorb the energy, blessings, and spirit that pervades this holy place, so they can be returned to me fully blessed.
And yet, this is not really about any of that symbolism or what Susan might see, feel, or experience while in Medjugorje. Susan's intentions and her willingness to travel to Bosnia to ask for healing is more than enough, in itself. I am humbled that someone would venture so far to ask so much for me. I can almost feel her intentions as I sit in this quiet house. She has, of course, left me dinner in the refrigerator complete with instructions for preparation. She has filled the freezer with food for my mother's visit while she is gone. And she is no doubt thinking of me, praying for me, and asking for my healing as she flies across the Atlantic. The care I have received from this young woman I fell in love with so many years ago is beyond description. Her heart is bigger than anyone's I have known and I have often exclaimed that I am so fortunate to have fallen in love with and been able to marry the nicest person I've ever met.
My studies in meditation have taught me that spiritual growth and healing are as much about intention as they are about action. The deeper the wish to grow or heal, the greater the growth or healing will be, especially when those intentions are accompanied by action. Right now a woman full of great energy is flying through the universe heading toward Medjugorje with a deep intention to heal her husband and her family. A greater love I could not ask for or receive. Please say a prayer tonight for my Susan. Godspeed my love. Dan
Sunday, April 23, 2006
Just Checking In
Not much news, but I thought I would log on and let you know what's going on here in Denver. I'm doing quite well on the velcade/dexamethasone. The steroids make me feel better and generally lift my spirits, so that's nice, although I do feel a bit like I'm flying on these drugs. Susan, Catherine and Julia accuse me of having 'roid rage. I am more loud, aggressive, argumentative and obsessive compulsive on this drug--we had this experience one year ago on my first chemo regime (thalidomide/dexamethasone). But I also have more energy. The weather has been beautiful so I have been taking lots of bike rides as well.
Susan leaves for Medjagoria this coming Thursday--a pilgrimage to the site of many apparitions of the Blessed Mother Mary. She is doing this for me and for her and will be praying for my health. Unfortunately she has come down with a sinus infection this past week, which she is trying to get rid of before getting on the airplane.
While Susan is gone my mother will be visiting. The family is still nervous about leaving me alone. I guess that comes from those many months when I was not to be left alone. Anyway, we'll have a nice visit, although I continue to believe I don't need looking after.
Catherine graduates on May 11. She will be graduating from the University of Colorado with high distinction with a degree in Finance and International Business as well as a certificate in Leadership Training. She is already working part time for a pension consulting firm and will start full time with them in June. We are, of course, very proud of her. Our friends, Sigun and Joe, will be flying in for the ceremony, direct from Paris. Susan's brother, Gary, will also be joining us.
My brother Tom will be visiting over Memorial Day and we are already putting together the job list for him. He is always so willing to dig in and do whatever needs to be done.
And then in early June a group of my high school classmates will be visiting for a mini reunion of the class of 1970. We have about 14 people committed to the event already and are all getting excited about seeing one another--for some of us it has been 30 years since we last saw each other. I am so touched that they would all fly in to Denver for this event and can hardly contain my excitement.
As you can see, it will be a busy couple of months and it feels good to have the energy to have all these plans in the works. Despite its difficulties, life is full. More velcade/dex tomorrow and Thursday, then a week off. I'm doing well. Love, Dan
Susan leaves for Medjagoria this coming Thursday--a pilgrimage to the site of many apparitions of the Blessed Mother Mary. She is doing this for me and for her and will be praying for my health. Unfortunately she has come down with a sinus infection this past week, which she is trying to get rid of before getting on the airplane.
While Susan is gone my mother will be visiting. The family is still nervous about leaving me alone. I guess that comes from those many months when I was not to be left alone. Anyway, we'll have a nice visit, although I continue to believe I don't need looking after.
Catherine graduates on May 11. She will be graduating from the University of Colorado with high distinction with a degree in Finance and International Business as well as a certificate in Leadership Training. She is already working part time for a pension consulting firm and will start full time with them in June. We are, of course, very proud of her. Our friends, Sigun and Joe, will be flying in for the ceremony, direct from Paris. Susan's brother, Gary, will also be joining us.
My brother Tom will be visiting over Memorial Day and we are already putting together the job list for him. He is always so willing to dig in and do whatever needs to be done.
And then in early June a group of my high school classmates will be visiting for a mini reunion of the class of 1970. We have about 14 people committed to the event already and are all getting excited about seeing one another--for some of us it has been 30 years since we last saw each other. I am so touched that they would all fly in to Denver for this event and can hardly contain my excitement.
As you can see, it will be a busy couple of months and it feels good to have the energy to have all these plans in the works. Despite its difficulties, life is full. More velcade/dex tomorrow and Thursday, then a week off. I'm doing well. Love, Dan
Friday, April 14, 2006
6 More Weeks of Velcade
Yes, the visit with Rifkin took place today at 4 p.m. The numbers report: IGGs at 2586, down from 2601. Not impressive; not even deemed responsive; but not upward. The multiple myeloma continues to be stable. The skeletal survey shows no change from 6 months ago, so that is good. Kidney and liver function are OK. I was more worried about the kidney function and a sore right hip. Rifkin attributes the hip pain to arthritis, although he is going to have the xray reexamined to make sure there is no change. No, it's not the bike riding as it started before I bought the bike. Because on the nonresponsiveness, however, I do not qualify for staying on the study for 4 more cycles.
Rifkin gave me the option of continuing with the velcade for 2 more cycles or going to Revlimid. Rifkin has presented papers at national conferences showing that 15% of the people on velcade don't show a response until 6 cycles. Feeling lucky, I chose 2 more cycles of velcade, which Rifkin said he was very comfortable with. Then I asked about using it in conjunction with dexamethasone (a steroid). He agreed that would be a good idea, and he could try the combination as I will no longer be in the study. My first treatment was thalidomide with dexamethasone,and I had a good response; although that combo ultimately put me in the hospital with a myriad of problems. So, the plan is 2 more cycles of velcade, with dexamethasone given IV with each shot of velcade. I felt that I had done my homework today, asked a number of questions, received good answers, and am pleased with the plan going forward. Susan and I both were relieved. Although we would certainly loved to have received news of a big drop in the IGGs, we have had doctor appointments with much worse news. Maybe stability in the numbers is OK after all.
Rifkin was also pleased to hear of my bike riding, saying that one of the goals of treatment is to give people some quality of life during treatment. He asked about work and I told him of my continuing struggles with back pain and memory issues, such that I was not comfortable taking on client's legal matters. (energy is also unpredictable) I taught a class at DU law school a few weeks ago. It was a good "trial run" as after one hour my back was killing me and I was exhausted. So much for that. I guess I'll stick with a leisurely bike ride!
If you didn't see the pictures from Australia, check out the prior posting. Those pictures are, again, compliments of John Sadwith, executive director of Colorado Trial Lawyers. He also provided the pictures from Africa and South America. Talk about being connected! Thank you John.
So, I start the velcade/dexamethasone on Monday and will finish in 6 weeks, likely with a bone marrow biopsy to check the cancer levels. I'll keep you posted if anything interesting happens on my bike rides.
Rifkin gave me the option of continuing with the velcade for 2 more cycles or going to Revlimid. Rifkin has presented papers at national conferences showing that 15% of the people on velcade don't show a response until 6 cycles. Feeling lucky, I chose 2 more cycles of velcade, which Rifkin said he was very comfortable with. Then I asked about using it in conjunction with dexamethasone (a steroid). He agreed that would be a good idea, and he could try the combination as I will no longer be in the study. My first treatment was thalidomide with dexamethasone,and I had a good response; although that combo ultimately put me in the hospital with a myriad of problems. So, the plan is 2 more cycles of velcade, with dexamethasone given IV with each shot of velcade. I felt that I had done my homework today, asked a number of questions, received good answers, and am pleased with the plan going forward. Susan and I both were relieved. Although we would certainly loved to have received news of a big drop in the IGGs, we have had doctor appointments with much worse news. Maybe stability in the numbers is OK after all.
Rifkin was also pleased to hear of my bike riding, saying that one of the goals of treatment is to give people some quality of life during treatment. He asked about work and I told him of my continuing struggles with back pain and memory issues, such that I was not comfortable taking on client's legal matters. (energy is also unpredictable) I taught a class at DU law school a few weeks ago. It was a good "trial run" as after one hour my back was killing me and I was exhausted. So much for that. I guess I'll stick with a leisurely bike ride!
If you didn't see the pictures from Australia, check out the prior posting. Those pictures are, again, compliments of John Sadwith, executive director of Colorado Trial Lawyers. He also provided the pictures from Africa and South America. Talk about being connected! Thank you John.
So, I start the velcade/dexamethasone on Monday and will finish in 6 weeks, likely with a bone marrow biopsy to check the cancer levels. I'll keep you posted if anything interesting happens on my bike rides.
Thursday, April 13, 2006
Australia!
[Dan's comment]
Photos from Australia. We have now circled the globe and received get well wishes from every continent. Amazing, just absolutely amazing.
From: Eva Scheerlinck
Subject: Photos for Dan
Hi John
As promised, here are some photos we took for Dan yesterday at the Sydney Opera House and Sydney Harbour Bridge. The people in the photo are JoAnne Barnes, Courtney Oliver, Kyrn Stevens, Patrick McCarthy, James Fielding, Gerry Ferretter and myself.
We all enjoyed our little field trip to the harbour. We hope they bring a smile to Dan's face.
[posted for Dan by Glen]
Saturday, April 01, 2006
The Roller Coaster Turns Into a Bicycle
After those last two posts, let's lighten things up a bit, don't you agree?
Julia and I went bicycle shopping today--for me. After a cursory review of the high end bikes, we selected a low end, wide seater with upright handlebars for yours truly. NOw, buying a bicycle might not be a bit deal, unless the buyer was in a walker 7 months ago and could hardly walk up a set of stairs 4 months ago. Under those circumstances this is a BIG DEAL. I remember thinking in January that I hoped I could recover enough from the transplant to ride a bike this Spring. Well, guess what--we have arrived!
The family was so cute. First, Julia maintained a watchful eye as I took my test drive. She tried to help me off the bike, but I refused any assistance, as I knew I had to do this on my own, or I wasn't deserving of the vehicle. No spills, so I didn't have to buy the training wheels. Wouldn't that be a sight! Susan and Catherine were concerned when I said I was going to ride my new bike home from the store--a mere 2 or 3 miles. I was required to take my cell phone "just in case", and when I turned the corner at home there was Susan with her camera in hand to preserve the moment. Small steps but important nonetheless.
I got over my funk within the required 2 days and am now ready for whatever the doctor prescribes. And in the meantime, if you need to get ahold of me, call me on the cell, as I will most likely be out for a ride.
Love, Dan
Julia and I went bicycle shopping today--for me. After a cursory review of the high end bikes, we selected a low end, wide seater with upright handlebars for yours truly. NOw, buying a bicycle might not be a bit deal, unless the buyer was in a walker 7 months ago and could hardly walk up a set of stairs 4 months ago. Under those circumstances this is a BIG DEAL. I remember thinking in January that I hoped I could recover enough from the transplant to ride a bike this Spring. Well, guess what--we have arrived!
The family was so cute. First, Julia maintained a watchful eye as I took my test drive. She tried to help me off the bike, but I refused any assistance, as I knew I had to do this on my own, or I wasn't deserving of the vehicle. No spills, so I didn't have to buy the training wheels. Wouldn't that be a sight! Susan and Catherine were concerned when I said I was going to ride my new bike home from the store--a mere 2 or 3 miles. I was required to take my cell phone "just in case", and when I turned the corner at home there was Susan with her camera in hand to preserve the moment. Small steps but important nonetheless.
I got over my funk within the required 2 days and am now ready for whatever the doctor prescribes. And in the meantime, if you need to get ahold of me, call me on the cell, as I will most likely be out for a ride.
Love, Dan
Friday, March 31, 2006
Healing Images
More stream of consciousness, but bear with me. This household is exhausted from the heaviness of this struggle, as I'm sure you are, but that's what you get when you sign up to be a "blogger." No one ever accused me of being a lightweight on matters of "the meaning of life". Back in the 70's we used to have sarcastic discussions of "what is reality"; Howie's position during any of those discussions was simply stated, "Who Cares?" Well, my friend, it is obvious you care.
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.
Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan
P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.
P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.
I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.
I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.
Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan
P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.
P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.
Monday, March 27, 2006
Musings of a Passenger on a Roller Coaster
I don't know how to relate this day's events other than the stream of consciousness that has plagued me all day. This posting will probably provide the clearest look into the heart of a cancer survivor struggling with his disease. It is neither optimistic nor pessimistic. It is a window into my mind this day, like so many days. It is raw and unapologetic.
We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.
First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.
This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."
"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."
Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?
If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.
Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:
"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."
This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.
Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.
Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.
The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.
In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.
I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.
Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."
Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.
So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.
The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.
I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...
Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.
Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.
I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan
We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.
First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.
This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."
"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."
Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?
If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.
Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:
"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."
This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.
Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.
Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.
The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.
In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.
I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.
Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."
Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.
So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.
The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.
I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...
Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.
Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.
I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan
Thursday, March 23, 2006
Velcade Continues to Do Its Work
Yes, today is the day for the "numbers" report. Today, March 23rd, also marks the one year anniversary of my multiple myeloma diagnosis. First, the numbers: Iggs are down to 2601 from a previous 2837. So, we have moved from 3220 to 2601--more than 600 points in a little over 2 months. I am happy, relieved, encouraged, hopeful, and thankful. I know we are not "there" yet, but we are moving in the right direction and that makes all the difference in how I feel when I get out of bed each morning. My white count is also better than usual. For you numbers watchers: white count at 2.5 today, with neutrophils at 1.4. Usually those numbers plummet as soon as I start my velcade (for example, I expected the white count to be around 1.6 and neutrophils around 800.)
Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?
And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.
Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.
I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!
And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!
Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan
And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.
And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!
Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?
And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.
Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.
I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!
And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!
Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan
And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.
And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!
Sunday, March 12, 2006
South America
Here is a photo from Rio, in front of the great Cristo de Corcovado. [Posted for Dan by Glen]
Africa
Here are "get well" pictures from Africa. Unbelievable! Now, off to Australia. and we'll have covered the world. [Posted for Dan by Glen]
Friday, March 10, 2006
No One Is Alone
From Susan: In reading the blog last night I was struck by something Joe wrote. In Naples, he described the hummm before mass began and then the walk up to received communion, not in customary single file, but in pairs. He said no one is ever alone in Naples. That resonated. I thought about it all day. I have days sometimes when I don't want to exercise, tidy the house, cook a meal, or answer the phone. The most I can do is lie on the sofa, brain dead. I think that every now and then the enormity of the past year just numbs the senses and I shut down. Without being too psychological, I suppose I am protecting myself.
But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.
So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.
But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!
P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).
Susan
But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.
So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.
But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!
P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).
Susan
Thursday, March 02, 2006
Numbers Move Slightly, But in the Right Direction
I know many of you are waiting for the news of the "numbers," so here they are: IGG at 2837. Previously it was at 2853. Not much movement, but at least in the right direction. I am remarkably unphased by it. As I was sitting in the exam room, after they had drawn the blood and just waiting for the results I realized that I had no investment in the outcome. I am feeling so much better than 6 or 7 months ago and I still believe that this drug will work for me that a temporary measurement of the numbers feels close to meaningless. I have been on this roller coaster for so long (11 months) that ups and downs are a given.
I had also decided that if there was little movement in the numbers today I would start back on the herbs, so when I got home that's exactly what I did. If I'm going to be a guinea pig (clinical trial= experimental) then I will do my own little experiment. This is also motivated by the drop in the white count. The white count did not move up significantly during the week off, and today I am actually neutropenic again. At a minimum I believe quite strongly that the herbal regime will boost the white count. And the white blood cells should have some capacity to attack the cancer cells, so the more the merrier, as they say. I will stick with it until the next myeloma blood draw and report of results. So, it will be about a 10 day test. If no adverse consequences, i.e., numbers going up, then I'll stick with it, as I know an herbal treatment will likely take longer to have some effect on the cancer.
Oh, they also measured my PSA (prostate specific antigen),which is .1. That means that the hormone shot they have been giving me (along with the velcade perhaps) is keeping the prostate cancer from growing. My PSA was 7.5 last March which lead to the prostate cancer diagnosis. So that is good, as it looks like it will take some time to get this myeloma in line (or out of my system). I'm scheduled for another hormone shot in a month. Love those hot flashes! NOT! I have developed great empathy (Yes, empathy) for all you women who have gone through menopause and suffered those years of hot flashes. Well, you got nothing on me anymore, my dears. I share your tears, and your sweats.
To put this all in perspective, I overheard a conversation today with a man who needs a transplant and whose autologous (his own) stem cell transplant didn't work and whose sister was not a match, and who they had yet to come up with a match in the national donor bank. Even if they find a match, a transplant from an unrelated donor is a much more difficult prospect than from a sibling. I can count my blessings every day for my brothers' matches.
Incidentally, my mother predicted long ago that Mike would be the match. A mother's intuition is hard to beat. She also said this fall that despite everything I am going through I will be OK--she just has that feeling, she says. Her intuition always threw me. When I was in college and would leave to go visit my friends, such as Spike and Howie in Grand Forks, she always knew the day I would return, even though I wouldn't have decided until that day. I could never understand that. And now she's even agreed to host a party at her house for the bloggers. What a Mom! But then all the people I grew up with have always known that.
Now, about that decision of selecting the proper donor. I see that the "Big Fella" has yet to weigh in on the matter. In reflecting on that I think I understand why. All criteria seem to have a common element: toughness. Whether a fight in the back yard, as I suggested, a test of orneriness as suggested by Joe, a Risk game as suggested by Kathy, or either of Spike's ideas, they all have that same theme. Now, if that is the test, can the Big Fella measure up when he is now going around in drag, masquerading as Mrs. Joshwick? Muscles Mike (his self assigned nickname in high school) would be so ashamed. Perhaps he's suffering some regret about revealing so much of his feminine side in light of the macho tests being recommended. I'm sure his silence has nothing to do with the fact that he is in Steamboat Springs, Colorado skiing.
And for those of you who didn't know, Tom's reference to his blood being able to beat cancer is serious. He recently underwent surgery for prostate cancer (late Jan.) and it appears to have been a great success. He is doing very well, is back at work, and as you can see, has a bit of orneriness still in him. Way to go Tom!
Cousin Rich just called and will be here soon, so I'll sign off. I'm doing fine, the velcade will do its job and I've got my two brothers to back me up if it doesn't. I'll bring you up to date in a week or so. Love, Dan
I had also decided that if there was little movement in the numbers today I would start back on the herbs, so when I got home that's exactly what I did. If I'm going to be a guinea pig (clinical trial= experimental) then I will do my own little experiment. This is also motivated by the drop in the white count. The white count did not move up significantly during the week off, and today I am actually neutropenic again. At a minimum I believe quite strongly that the herbal regime will boost the white count. And the white blood cells should have some capacity to attack the cancer cells, so the more the merrier, as they say. I will stick with it until the next myeloma blood draw and report of results. So, it will be about a 10 day test. If no adverse consequences, i.e., numbers going up, then I'll stick with it, as I know an herbal treatment will likely take longer to have some effect on the cancer.
Oh, they also measured my PSA (prostate specific antigen),which is .1. That means that the hormone shot they have been giving me (along with the velcade perhaps) is keeping the prostate cancer from growing. My PSA was 7.5 last March which lead to the prostate cancer diagnosis. So that is good, as it looks like it will take some time to get this myeloma in line (or out of my system). I'm scheduled for another hormone shot in a month. Love those hot flashes! NOT! I have developed great empathy (Yes, empathy) for all you women who have gone through menopause and suffered those years of hot flashes. Well, you got nothing on me anymore, my dears. I share your tears, and your sweats.
To put this all in perspective, I overheard a conversation today with a man who needs a transplant and whose autologous (his own) stem cell transplant didn't work and whose sister was not a match, and who they had yet to come up with a match in the national donor bank. Even if they find a match, a transplant from an unrelated donor is a much more difficult prospect than from a sibling. I can count my blessings every day for my brothers' matches.
Incidentally, my mother predicted long ago that Mike would be the match. A mother's intuition is hard to beat. She also said this fall that despite everything I am going through I will be OK--she just has that feeling, she says. Her intuition always threw me. When I was in college and would leave to go visit my friends, such as Spike and Howie in Grand Forks, she always knew the day I would return, even though I wouldn't have decided until that day. I could never understand that. And now she's even agreed to host a party at her house for the bloggers. What a Mom! But then all the people I grew up with have always known that.
Now, about that decision of selecting the proper donor. I see that the "Big Fella" has yet to weigh in on the matter. In reflecting on that I think I understand why. All criteria seem to have a common element: toughness. Whether a fight in the back yard, as I suggested, a test of orneriness as suggested by Joe, a Risk game as suggested by Kathy, or either of Spike's ideas, they all have that same theme. Now, if that is the test, can the Big Fella measure up when he is now going around in drag, masquerading as Mrs. Joshwick? Muscles Mike (his self assigned nickname in high school) would be so ashamed. Perhaps he's suffering some regret about revealing so much of his feminine side in light of the macho tests being recommended. I'm sure his silence has nothing to do with the fact that he is in Steamboat Springs, Colorado skiing.
And for those of you who didn't know, Tom's reference to his blood being able to beat cancer is serious. He recently underwent surgery for prostate cancer (late Jan.) and it appears to have been a great success. He is doing very well, is back at work, and as you can see, has a bit of orneriness still in him. Way to go Tom!
Cousin Rich just called and will be here soon, so I'll sign off. I'm doing fine, the velcade will do its job and I've got my two brothers to back me up if it doesn't. I'll bring you up to date in a week or so. Love, Dan
Monday, February 27, 2006
It's a Match, and Other Happenings
As I mentioned in an earlier post, my brothers and sister were requested to have blood drawn to see if their blood matched mine, for a possible transplant (called a mini allogenaic transplant). They look at 10 separate antigens. I think it's called HLA testing. Anyway, they have all been subjected to the needle in the arm and had blood sent to the lab for testing. The testing involves 2 steps--a blood serology test and, if that matches, then DNA matching. There is a 25% chance that a sibling will match. If the serology matches, then the odds are 95% in favor of a DNA match. So here's the news: Mike (aka "The Big Fella" or "Mrs. Joshwick" on the blog) is a complete match on both serology and DNA. Tom (aka "Mr. Pete", and apparently now also known as "T-Bone" in Spokane) is a serology match and we are awaiting the DNA testing. They decided not to complete testing of my sister Kathy's blood, after getting Mike's results back, as apparently a woman who has had kids (Kathy has 3) develops antibodies that make the transplant more difficult for the recipient, even if the antigens match. So, in the event I will need another transplant to bring this myeloma under control, I have a match with Mike and also probably with Tom (will know in about 10 days). So here are the questions for you bloggers: For those of you who know Mike, "Is the world ready for 2 Big Fellas?" Should I have them go out into the back yard and take the blood donation from the one who survives? What testing criteria do you suggest to assist me in this very difficult decision? As I told each of them as I was saying goodbye on the phone today, "You take care of yourself, your life isn't just about you anymore!" All joking aside, I am overjoyed that if need be, I have a sibling blood donor to get me through the next transplant.
I had blood drawn today for myeloma testing, but won't know the results until Thursday. I feel quite good after this past week off. I think this velcade is a good drug. I got velcade (I'm starting my 3rd cycle) and zometa today, along with an antinausea drug.
And our abundance of friends continues. This weekend brought more of the same parade of friends through our house. We had such a good time. Both Catherine and Julia were home, which made it all the more fun. Saturday morning our doors opened at around 10 a.m. and Gail and her son Paul arrived. I student taught with Gail (she was my supervising teacher) many years ago (pre law school) and we have remained close friends. Gail is a techno whiz and has been helping us with various technical issues around the house, like DVD's and headphones, etc. Paul made me a "chain" of colored links, to count they days for my release from the hospital after my transplant. Soon after Gail and Paul arrived, Jim and Nancy Neenan showed up just to check in on us. They are the couple who were responsible for the statue of Mary coming to our house a few months ago. While they were here, our friend Devraj dropped by. Soon after that Kathryn McNamee, the principal at our girls' high school came by to go to lunch with Susan. Then Gail's daughter, Molly, and her fiance' Dan stopped in. Molly is getting married this coming summer and Catherine will be her maid of honor. Molly works just up the street in the lab at National Jewish Hospital and has been a great resource for us biologically challenged individuals. Jeff Hammerberg then stopped in, for his 2nd visit of the week, bringing a bouquet of flowers, as he so often does. Jeff had been by earlier in the week with his mother, Dollie, and his brother, Jason, both of whom were here visiting from Minnesota. I should note that I was lounging around in my pajamas when Gail and Paul arrived and I finally had to excuse myself at 1:30 to get dressed before I left for my meditation class. I got home at 6 p.m. and our friends, the Richardsons, arrived at 7 for dinner. Yes, they are still our friends, even after surviving an evening on the town with The Big Fella. (see the posting entitled, "Velcade--Second Cycle Begins"). Chris and Lenie Richardson are going to Italy this summer for their 25th wedding anniversary and we spent the evening talking about all the great places to see, the best restaurants, etc. (along with Julia and Catherine--who spent a semester in Florence). We also had to drink some Italian wine to capture the moment--yes I still imbibe on that week off. Sunday was relatively calm, with only one couple--Kevin and Mary Beall visiting us. Most amazing about these visitors is that (with the exception of the lunch and dinner guests) they were all "drop ins". We are so tickled that our friends are that comfortable that they just drop in to see us. That is usually such a rare occurrence in larger cities, but not in this household. And we are comfortable enough that I just lounge around in my p.j.'s. It is so much fun.
We have a couple of out of town visitors coming in this week. Tim Boulger, one of the cousins from southern California, will be here on Wednesday and Rich Boulger, who grew up with us in North Dakota, will be here on Thursday (for his second visit). I am looking forward to seeing both of them and catching up on all the family gossip.
Despite all the struggles and worries, life feels rich and full. We so enjoy all of our visitors and look forward to the weekends when we know our friends will be dropping in for a visit. I think our daughters are of a similar opinion, as they certainly like to come home for the weekends. All they can say about it is, "This is crazy." Yes, it is. And may it continue. Love, Dan
I had blood drawn today for myeloma testing, but won't know the results until Thursday. I feel quite good after this past week off. I think this velcade is a good drug. I got velcade (I'm starting my 3rd cycle) and zometa today, along with an antinausea drug.
And our abundance of friends continues. This weekend brought more of the same parade of friends through our house. We had such a good time. Both Catherine and Julia were home, which made it all the more fun. Saturday morning our doors opened at around 10 a.m. and Gail and her son Paul arrived. I student taught with Gail (she was my supervising teacher) many years ago (pre law school) and we have remained close friends. Gail is a techno whiz and has been helping us with various technical issues around the house, like DVD's and headphones, etc. Paul made me a "chain" of colored links, to count they days for my release from the hospital after my transplant. Soon after Gail and Paul arrived, Jim and Nancy Neenan showed up just to check in on us. They are the couple who were responsible for the statue of Mary coming to our house a few months ago. While they were here, our friend Devraj dropped by. Soon after that Kathryn McNamee, the principal at our girls' high school came by to go to lunch with Susan. Then Gail's daughter, Molly, and her fiance' Dan stopped in. Molly is getting married this coming summer and Catherine will be her maid of honor. Molly works just up the street in the lab at National Jewish Hospital and has been a great resource for us biologically challenged individuals. Jeff Hammerberg then stopped in, for his 2nd visit of the week, bringing a bouquet of flowers, as he so often does. Jeff had been by earlier in the week with his mother, Dollie, and his brother, Jason, both of whom were here visiting from Minnesota. I should note that I was lounging around in my pajamas when Gail and Paul arrived and I finally had to excuse myself at 1:30 to get dressed before I left for my meditation class. I got home at 6 p.m. and our friends, the Richardsons, arrived at 7 for dinner. Yes, they are still our friends, even after surviving an evening on the town with The Big Fella. (see the posting entitled, "Velcade--Second Cycle Begins"). Chris and Lenie Richardson are going to Italy this summer for their 25th wedding anniversary and we spent the evening talking about all the great places to see, the best restaurants, etc. (along with Julia and Catherine--who spent a semester in Florence). We also had to drink some Italian wine to capture the moment--yes I still imbibe on that week off. Sunday was relatively calm, with only one couple--Kevin and Mary Beall visiting us. Most amazing about these visitors is that (with the exception of the lunch and dinner guests) they were all "drop ins". We are so tickled that our friends are that comfortable that they just drop in to see us. That is usually such a rare occurrence in larger cities, but not in this household. And we are comfortable enough that I just lounge around in my p.j.'s. It is so much fun.
We have a couple of out of town visitors coming in this week. Tim Boulger, one of the cousins from southern California, will be here on Wednesday and Rich Boulger, who grew up with us in North Dakota, will be here on Thursday (for his second visit). I am looking forward to seeing both of them and catching up on all the family gossip.
Despite all the struggles and worries, life feels rich and full. We so enjoy all of our visitors and look forward to the weekends when we know our friends will be dropping in for a visit. I think our daughters are of a similar opinion, as they certainly like to come home for the weekends. All they can say about it is, "This is crazy." Yes, it is. And may it continue. Love, Dan
Wednesday, February 22, 2006
Nina's Quilt
Speaking of the abundance of friends (see previous post), I have to tell you about the quilt that our friend, Nina Companion, had delivered about 2 weeks ago. Nina used to live in Colorado and, although she now lives in Massachusetts, has been a source of constant support for us these past months, including a visit this past fall. So 2 weeks ago Friday I was having a particularly bad day and Susan tells me that a package has arrived for me. I open the large box and there is a quilt, with pictures sewn throughout the quilt. Nina got the pictures from Julia and Catherine (which they scanned and emailed) and they are photos of our family taken during the past 20 years. They are printed on fabric and sewn into the quilt. The quilt is such a work of love, even more so because Nina herself suffers from health problems which no doubt made this project even more difficult. To top it all off, Nina called the girls and asked them to show up that evening to share in the joy of the arrival of the quilt; so Julia and Catherine both showed up, independently and unexpectedly, and raised my spirits considerably. The quilt is in my favorite color: blue, and it keeps me warm every morning during my daily meditation. These last two posts are but a few of the many gifts of love that our friends have brought to us. Calls, letters, cards, visits, gifts, food, flowers, prayers and innumerable blog postings have rained down upon us. We are so grateful. Love, Dan
Tuesday, February 21, 2006
An Abundance of Friends
Since almost 2 weeks have passed since my last update I thought it might be appropriate to at least let all of you know what has been going on in our lives these past two weeks. I finished my second cycle of velcade last Thursday, got quite sick on Friday, as expected, and am now in the "week off" and enjoying the absence of any heavy drugs being injected into my system. In celebration of completing the second cycle Susan and I were invited to the mountains to stay with our friends, the Dowells, who have built a beautiful home in the Colorado Rockies. We spent two nights at their house with them just relaxing. It was so nice. Marta fixed great meals, we took long walks, and we sat in front of the wood burning stove and talked and talked (and drank a little wine--another one of the benefits of being off the velcade!) We returned on Monday very refreshed. When we arrived home we found dinner had been placed on our front step by our friend, Jeff Hammerberg, who stops by at least once a week (usually more often)just to check on us. We weren't home even two hours and our friends the Jennettes dropped by with a freshly baked apple pie. Of course, we had to drink some wine with them. While we were enjoying that visit another friend and former teacher of both of our daughters, Brett James, and a friend of his drop in "just to say hi". Oh, and while we were away at the Dowells, our close friend Ruth Clements, brought our 2 daughters fresh baked cinnamon rolls. (yes, we left our 2 daughters home for the weekend--they don't take after their father, thank god!)
This morning the founder of this blog, Ted Bettridge, calls and says he has fresh baked french bread and would like to drop by. He arrived a short time later with 3 loaves of warm bread. So, of course, he and I have coffee and bread slathered in butter and jam. While we are still eating, in walk Susan and Ingrid (yes, the blogger from Italy, who is here visiting her guy wholives next door). Ted was thrilled to finally meet Ingrid, after reading her many interesting postings from Siena. Then the doorbell rings and it is Peggy Rottner, with more food to keep us healthy. Just another morning at the Pattersons!
And this is how it has gone ever since that day I was diagnosed, almost a year ago, and our friends, Doris and Devraj Sharma showed up at our door that evening with dinner for the entire family. And as long ago and as far away as that day now seems, I continue to marvel at the warmth, generosity and steadfastness of our friends. Of all the things I have learned during the struggles of this past year, I think the most important one is what all of you have taught me--which is how to be a true friend.
I continue to feel better than I have in a long time, even though I tire easily and Fridays are just "the pits". I start the third velcade cycle on Monday and I'll have more numbers a week from this coming Thursday. Until then, take care and I love you all. Dan
This morning the founder of this blog, Ted Bettridge, calls and says he has fresh baked french bread and would like to drop by. He arrived a short time later with 3 loaves of warm bread. So, of course, he and I have coffee and bread slathered in butter and jam. While we are still eating, in walk Susan and Ingrid (yes, the blogger from Italy, who is here visiting her guy wholives next door). Ted was thrilled to finally meet Ingrid, after reading her many interesting postings from Siena. Then the doorbell rings and it is Peggy Rottner, with more food to keep us healthy. Just another morning at the Pattersons!
And this is how it has gone ever since that day I was diagnosed, almost a year ago, and our friends, Doris and Devraj Sharma showed up at our door that evening with dinner for the entire family. And as long ago and as far away as that day now seems, I continue to marvel at the warmth, generosity and steadfastness of our friends. Of all the things I have learned during the struggles of this past year, I think the most important one is what all of you have taught me--which is how to be a true friend.
I continue to feel better than I have in a long time, even though I tire easily and Fridays are just "the pits". I start the third velcade cycle on Monday and I'll have more numbers a week from this coming Thursday. Until then, take care and I love you all. Dan
Thursday, February 09, 2006
Numbers Dropping and Spirits Rising
This past 11 months have been such a roller coaster that we are naturally quite guarded in receiving any news. Good news has been rare and unfortunately temporary. We are ever mindful of there being no cure for this nasty disease but always hopeful for a turn towards greater control over the propogation of bad cells or even a push into remission. With that in mind we happily received Dr. Rifkin's report today that my IGG numbers have moved downward since we started the velcade. The IGG is "the enemy" in Rifkin's words. My numbers had been rising just before going on the velcade--they went from 2840 in late December to 3220 by January 9th, just before we started the trial. They have now dropped back down to 2850, as of Monday, Feb. 6th. Definitely a move in the right direction and seen by Rifkin and my study coordinator as a good response to the velcade, particularly in light of my having only received 4 shots as of the testing. Our whole family is relieved and guardedly hopeful. The failure of the transplant was so difficult to hear and then the apprehension of waiting for these tests results was quite unnerving. I just didn't feel prepared to deal with a nonresponse or worse yet, continued rising of the numbers. This has been such a mental struggle and even a bit of good news can carry my attitude a long way towards hope and recovery. So, today is a good day and we are ever hopeful that we will establish a long trend toward normal numbers and remission. I know, because I can feel it, that so many of you are waiting for this news and that we are in your thoughts and prayers today. Susan, Catherine, Julia and I are so very grateful that you are all in our lives and for all of your support. It feels like we are encircled by a wall of friendship that protects, prays and supports us. It is a very nice feeling. Thank you once again to all of our friends. We will get through this.
Incidentally, the vitamin regime has had a very positive effect on my neuropathy, having reduced the frequency as well as the severity of the shooting pains. Is it time for the herbs? Do I even want to start that debate again? Never mind, I think I'll just stick with the velcade for awhile.
So, I got my second velcade shot today for this cycle and will get 2 more next week, then a week off--thank god. They'll do more IGG blood work the morning I start my 3rd cycle--which will be in 2 1/2 weeks. I should finish the first regime of 4 cycles sometime in late March/early April. Then another bone marrow biopsy and a decision whether to undergo another 3 month cycle of velcade. That's all for now. In light of today's news, I feel much better prepared to deal with the side effects these next weeks. As always, Love, Dan
Incidentally, the vitamin regime has had a very positive effect on my neuropathy, having reduced the frequency as well as the severity of the shooting pains. Is it time for the herbs? Do I even want to start that debate again? Never mind, I think I'll just stick with the velcade for awhile.
So, I got my second velcade shot today for this cycle and will get 2 more next week, then a week off--thank god. They'll do more IGG blood work the morning I start my 3rd cycle--which will be in 2 1/2 weeks. I should finish the first regime of 4 cycles sometime in late March/early April. Then another bone marrow biopsy and a decision whether to undergo another 3 month cycle of velcade. That's all for now. In light of today's news, I feel much better prepared to deal with the side effects these next weeks. As always, Love, Dan
Monday, February 06, 2006
Velcade--Second Cycle Begins
Last week was nice without the velcade. I didn't realize how much it affected me until I got off it. My energy returned, just in time for my brother Mike's visit. Mike promised to bring some "fun" to the mile high city and he accomplished his mission. He had us laughing much of the time, which felt quite "normal" for a change. Our friends, Chris and Lenie Richardson went out to dinner with us on Friday and we had a raucous time. I thought the restaurant was going to throw us out. Catherine thought Uncle Mike was "hysterical" and truly appreciates his humor. I'm not sure the other patrons agreed.
I had blood drawn today to check the myeloma levels, but I won't know the results until Thursday. My white count rebounded some during the week off (although not as high as when I was on the herbs) and my platelets are good, so I qualified for the next round of velcade; yippee! Interestingly, one of the nurses gave me some home remedies to help reduce the neuropathy I get from the velcade. The remedy is heavy doses of Vitamin B 12 and folic acid--the same combination that my herbalist prescribed for me! hmmmmm.
So we start another round. I still feel good (relatively) and people tell me I look good, to which I always respond that "I'm the picture of good health". Truly, you wouldn't know I had anything wrong with me simply by looking at me. I'm not looking forward to these next 2 weeks but then there will be another week off and that will be nice.
And finally, I must apologize for the long delay between posts. Arlene gave me a hard time yesterday for not keeping more current(all in good fun I should add). I'll try to do better. I am very moved when I hear that so many of my friends and family check the blog first thing every day. How sweet to be in your thoughts so consistently. Your good thoughts and energy keep me going (and apparently looking good as well). Take care all of you. I hope you have a fine week and I'll report the news on the myeloma either Thursday or Friday. Love to all, Dan
I had blood drawn today to check the myeloma levels, but I won't know the results until Thursday. My white count rebounded some during the week off (although not as high as when I was on the herbs) and my platelets are good, so I qualified for the next round of velcade; yippee! Interestingly, one of the nurses gave me some home remedies to help reduce the neuropathy I get from the velcade. The remedy is heavy doses of Vitamin B 12 and folic acid--the same combination that my herbalist prescribed for me! hmmmmm.
So we start another round. I still feel good (relatively) and people tell me I look good, to which I always respond that "I'm the picture of good health". Truly, you wouldn't know I had anything wrong with me simply by looking at me. I'm not looking forward to these next 2 weeks but then there will be another week off and that will be nice.
And finally, I must apologize for the long delay between posts. Arlene gave me a hard time yesterday for not keeping more current(all in good fun I should add). I'll try to do better. I am very moved when I hear that so many of my friends and family check the blog first thing every day. How sweet to be in your thoughts so consistently. Your good thoughts and energy keep me going (and apparently looking good as well). Take care all of you. I hope you have a fine week and I'll report the news on the myeloma either Thursday or Friday. Love to all, Dan
Friday, January 27, 2006
First Velcade Cycle is Over
Hello everyone. I wrote a lengthy post yesterday but alas the blog site went down in the midst of my writing and I lost it all. So I took 24 hours to recover and to see how much I can reconstruct. Yesterday (Thursday) I received my final velcade shot for the first phase along with an IV of zometa to keep building those bones back up. The side effects these past 2 weeks have included some nausea, which is controlled by meds, some neuropathy (shooting pains in the feet and some in the hands), which is tolerable, and significant fatigue the day after each of my velcade shots--Tuesdays and Fridays are energy challenges. But by the time I'm going in for my next shot, I seem to be feeling better. I am looking forward to having next week off from the velcade. My white count and neutrophils continue to fall and I am now neutropenic. Platelets are also low. I'm told this is most likely due to the velcade and we are hoping to see these numbers rise during my week off. They will check my myeloma numbers when I return for my first shot of the second cycle (Feb. 6th). I won't have the results until Wed. or Thurs. of that week and will report once I have more info.
My brother Mike is planning a visit next week and we are looking forward to it. We, as always, have a few jobs for him but mostly hope to just have some fun.
Both of the girls (young women to be more accurate) have returned to school. The house isn't as quiet as you might think as Catherine has started her part time job here in Cherry Creek and is here 3 days a week. While she is very busy with her work, course load and commute to Boulder, we are elated she is here so often and she also gets a good home cooked meal. Julia is taking calculus this block and is not happy. Her outlet? She plans to go skiing every weekend. Sounds like a gene I might have passed on to her.
Speaking of home cooking, Susan's cousin, Eileen Stinson, is on assignment here in Denver for the next 6 months and is staying at the JW Marriott here in Cherry Creek. Eileen is a fabulous Italian cook and has spent a few hours in our kitchen already. mmmmmm, delicious. She is also very funny and the girls think she is hysterical. Susan has long bemoaned the absence of family "out in the boondocks" so she is very happy a family member is now nearby.
With the posting from Antarctica my brother Tom commented that we are only missing posts from Africa and South America and we will have communicated with every one of the 7 continents. Not bad for a North Dakotan from the north side of the tracks.
So, I am doing well. My disease feels as if it has moved from dealing with acute situations to a chronic disease. While it is easier not to have to wrestle with the daily pain issues, the idea of always having to deal with these cancer treatments and the physical limitations due to my lack of energy and my back problems is hard to accept. My struggle with whether I will ever be able to try another case is another issue we'll leave for another day. I know we all age and as we do we will have to confront these issues; I just wasn't prepared to face these issues at the young age of 53. So be it. Don't worry, we still know how to laugh and have fun and as I continue to recover the from transplant we are certainly finding ourselves laughing a bit more. So, once again, stay with us as we walk this path and let's not forget to have some fun along the way. Love, Dan
My brother Mike is planning a visit next week and we are looking forward to it. We, as always, have a few jobs for him but mostly hope to just have some fun.
Both of the girls (young women to be more accurate) have returned to school. The house isn't as quiet as you might think as Catherine has started her part time job here in Cherry Creek and is here 3 days a week. While she is very busy with her work, course load and commute to Boulder, we are elated she is here so often and she also gets a good home cooked meal. Julia is taking calculus this block and is not happy. Her outlet? She plans to go skiing every weekend. Sounds like a gene I might have passed on to her.
Speaking of home cooking, Susan's cousin, Eileen Stinson, is on assignment here in Denver for the next 6 months and is staying at the JW Marriott here in Cherry Creek. Eileen is a fabulous Italian cook and has spent a few hours in our kitchen already. mmmmmm, delicious. She is also very funny and the girls think she is hysterical. Susan has long bemoaned the absence of family "out in the boondocks" so she is very happy a family member is now nearby.
With the posting from Antarctica my brother Tom commented that we are only missing posts from Africa and South America and we will have communicated with every one of the 7 continents. Not bad for a North Dakotan from the north side of the tracks.
So, I am doing well. My disease feels as if it has moved from dealing with acute situations to a chronic disease. While it is easier not to have to wrestle with the daily pain issues, the idea of always having to deal with these cancer treatments and the physical limitations due to my lack of energy and my back problems is hard to accept. My struggle with whether I will ever be able to try another case is another issue we'll leave for another day. I know we all age and as we do we will have to confront these issues; I just wasn't prepared to face these issues at the young age of 53. So be it. Don't worry, we still know how to laugh and have fun and as I continue to recover the from transplant we are certainly finding ourselves laughing a bit more. So, once again, stay with us as we walk this path and let's not forget to have some fun along the way. Love, Dan
Thursday, January 19, 2006
Velcade round two and thoughts on those herbs
Received my second shot of velcade today. Once again fairly uneventful, except for the following: white count is down to 2.4 today--from 3.8 on Monday. Neutrophils also dropped. Nurse says its due to the velcade most likely. Could it be due to not taking the herbs? no one can answer that and I'll comment more on that later. I did have a discussion with one of the nurses about my returning to the office for a few hours each day this week. She was a bit upset, and reminded once again that stressful environments for patients with myeloma are "toxic". I assured her I was trying to stay away from the stress, such as not interacting with clients or opposing lawyers and only going in for a few hours. She generally is not in favor of my return to the law firm environment. I, on the other hand, feel I need to do something on those days when I have more energy and hope that I can stay out of the fray when i go into the office. We'll see how it goes.--While I had pretty good energy this week, today I am quite tired, and in fact when I got home from the clinic had to take a nap. Not much threat of reestablishing a law practice with this kind of work ethic!
And now about those herbs. First, please understand that I love my doctor and think very highly of him and his knowledge and experience in the treatment of multiple myeloma (MM). While I can appreciate those of you who endorse more traditional medicine, I must say that my experience these past months, at least with this disease,makes me feel like a guinea pig. THe treatments have really not made much progress against the disease, but they certainly have hit me hard in other ways--such as wiping out my immune system and putting a strain on my kidneys. When I came down with the "crud", i.e., RSV, the baby virus, I got angry, as I know that I got that because of my compromised immune system, which is a direct result of my chemo. There have been times when I have certainly felt that the cure was going to get me before the disease did. I now understand the comments made by a couple of my doctors, that you have to be strong to survive this disease. What they meant is you have to be strong enough to endure the treatment regimes.
We all know that our bodies can heal themselves--witness the broken bones that have mended and the gaping flesh wounds that have healed. The same process can occur within my blood stream. Admittedly the herbal treatments don't have a lot of scientfic backup, but I blame the medical establishment for much of that. Linus Pauling is a great example. For those who are not familiar with him, he was a chemist, who won two nobel prizes--one for chemistry and one for peace. He did much research on megadoses of Vit. C as a treatment for cancer. He documented his results, presented it to numerous clinics, hospitals and med schools, and generally met with rejection and often ridicule. Having read a couple of his books, I believe he has legitimate scientific backup for his conclusions, but the medical community just doesn't want to believe it. (I did talk to my doctor about megadosing Vit. C, and although he did not discount its potential to help me, he thought it would be too hard on my kidneys--which are hit by my MM--but then so did most of the chemo he gave me.) I use this as an example and admit that most herbs don't have the scientific backup. That being said, there are MM survivors who have rejected traditional treatment and beaten the disease--my friend who referred me to the herbalist as well as another who wrote a book about his naturalisitic approach--"Medical Mutiny". The other problem is that most herbal approaches are taken only as a last resort--when all else has failed. One wonders what the results would be if it were a treatment of first resort. I started trying to figure out what nutrition could do for me in this struggle about 2 1/2 months ago and became very frustrated. For every wholistic approach, there was a harsh critic from the medical community and vice versa. I wish they would work more closely together instead of trying to trump one another. Simplistically, I feel that since my immune system is currently incapable of eradicating this cancer, herbs that can enhance my immune system function might present the possibility of increasing my body's ability to fight the cancer.
So, how do I answer my dilemna? I have decided to forgo the herbs for the first velcade cycle (2 weeks) to see what my numbers are while solely on velcade. Depending on the results, I may, or may not, restart the herbs. I will tell my doctor what I am doing. I am going to continue to take one of the products, which is a pulverized rice grain powder, as it really isn't an herb, but made from a natural food source. So, thanks for all the input and I'll keep you all informed. I really enjoyed all the thoughts and comments. What an interesting group you are! (and Arlene, thanks for the PDR reference, I am on it!) Love to all, Dan
And now about those herbs. First, please understand that I love my doctor and think very highly of him and his knowledge and experience in the treatment of multiple myeloma (MM). While I can appreciate those of you who endorse more traditional medicine, I must say that my experience these past months, at least with this disease,makes me feel like a guinea pig. THe treatments have really not made much progress against the disease, but they certainly have hit me hard in other ways--such as wiping out my immune system and putting a strain on my kidneys. When I came down with the "crud", i.e., RSV, the baby virus, I got angry, as I know that I got that because of my compromised immune system, which is a direct result of my chemo. There have been times when I have certainly felt that the cure was going to get me before the disease did. I now understand the comments made by a couple of my doctors, that you have to be strong to survive this disease. What they meant is you have to be strong enough to endure the treatment regimes.
We all know that our bodies can heal themselves--witness the broken bones that have mended and the gaping flesh wounds that have healed. The same process can occur within my blood stream. Admittedly the herbal treatments don't have a lot of scientfic backup, but I blame the medical establishment for much of that. Linus Pauling is a great example. For those who are not familiar with him, he was a chemist, who won two nobel prizes--one for chemistry and one for peace. He did much research on megadoses of Vit. C as a treatment for cancer. He documented his results, presented it to numerous clinics, hospitals and med schools, and generally met with rejection and often ridicule. Having read a couple of his books, I believe he has legitimate scientific backup for his conclusions, but the medical community just doesn't want to believe it. (I did talk to my doctor about megadosing Vit. C, and although he did not discount its potential to help me, he thought it would be too hard on my kidneys--which are hit by my MM--but then so did most of the chemo he gave me.) I use this as an example and admit that most herbs don't have the scientific backup. That being said, there are MM survivors who have rejected traditional treatment and beaten the disease--my friend who referred me to the herbalist as well as another who wrote a book about his naturalisitic approach--"Medical Mutiny". The other problem is that most herbal approaches are taken only as a last resort--when all else has failed. One wonders what the results would be if it were a treatment of first resort. I started trying to figure out what nutrition could do for me in this struggle about 2 1/2 months ago and became very frustrated. For every wholistic approach, there was a harsh critic from the medical community and vice versa. I wish they would work more closely together instead of trying to trump one another. Simplistically, I feel that since my immune system is currently incapable of eradicating this cancer, herbs that can enhance my immune system function might present the possibility of increasing my body's ability to fight the cancer.
So, how do I answer my dilemna? I have decided to forgo the herbs for the first velcade cycle (2 weeks) to see what my numbers are while solely on velcade. Depending on the results, I may, or may not, restart the herbs. I will tell my doctor what I am doing. I am going to continue to take one of the products, which is a pulverized rice grain powder, as it really isn't an herb, but made from a natural food source. So, thanks for all the input and I'll keep you all informed. I really enjoyed all the thoughts and comments. What an interesting group you are! (and Arlene, thanks for the PDR reference, I am on it!) Love to all, Dan
Monday, January 16, 2006
Velcade--round one
As you all know, I received my first dose of velcade today. I now know how much people enjoy my analytical description of my treatment regimes (this is for you Patti Hallowell!) so here goes: blood work drawn, clinical trial coordinator pays a visit and explains once again what the routine will be, explains possible side effects, and invites questions, Dr. Rifkin conducts examination and I continue to look "beautiful", in his words, and then an IV, an antinausea drug, and a syringe full of velcade are given to me. A fifteen minute wait to make sure no adverse reaction and I get to go home, 1 1/4 hours after arriving. Not too bad. I return on Thursday for the second dose and will get 2 next week, then they analyze the blood and I get a week off before the second of four cycles begins. I didn't have many questions as Molly Johnston, the daughter of my good friend Gail, stopped by over the holidays and explained to all of us the cellular function of velcade and why it can be so good for myeloma patients. Molly has a degree in biology and is working in the research lab at National Jewish Hospital here in Denver. She had diagrams and velcade studies for us and even wrote everything out in laymen's terms for our nonscientific minds. Thank you Molly!
An interesting side note: one week ago I visited an herbalist on the recommendation of someone I met who has myeloma but claims he took it into remission after seeing this herbalist who prescribed a variety of herbs and vitamins. I purchased many such herbs on her recommendation and have diligently been taking them as prescribed this past week. I am feeling pretty good this week and have been able to resume my visits to the health club; I'm also over the crud. My white count today is 3.8, which is higher than it has been in more than a month and my neutrophil count is similarly up--both good signs. So I presented Dr. Rifkin with my list of herbs I'm taking and asked whether he thought I shouldn't be taking any of them. He says that since we don't know what they will do with the velcade I should stay away from them until we see how I respond to the velcade. We (Susan, Julia and I) are discussing whether I should follow that advice. I suspect they won't harm any positive results from the velcade but might wait a few weeks before resuming the herbal diet to see how I respond to the velcade. On the other hand, I am just as inclined to continue with them as I think they have helped restore my immune system function. Your thoughts will be appreciated.--but not necessarily followed--I always have been a contrarian.
Catherine returned to Boulder today and we miss her already, even though she will be visiting with us 2 or 3 times a week as she will be working part time at her new job in Cherry Creek. Julia returns to school this coming weekend and until then is planning numerous ski trips to our snow laden ski resorts. Susan continues to be the pillar of strength and hope for my continued health--when I returned home from the clinic today she had just completed saying a rosary for me. We all had a great holiday, laughed way too much, and enjoyed just being together.
Friends continue to show up on the blog, which always gives me a smile. I particularly loved hearing that one of my high school friends (yes, you Patti, once again) is teaching the daughter of another of my high school friends (that would be you Howie). Somehow it seems to me that justice would have been better served if Howie had, not only a sweet daughter, but also a son like himself to give him a bit of a challenge comparable to those challenges Howie gave his mom. On the other hand, nothing softens up us "tough guys" more than having a daughter or two to wrap us around their little fingers!
I continue to be optimistic for this coming year and extend my gratitude once again for all our many friends who have supported us through these past 10 months. My best to all of you. Love, Dan
An interesting side note: one week ago I visited an herbalist on the recommendation of someone I met who has myeloma but claims he took it into remission after seeing this herbalist who prescribed a variety of herbs and vitamins. I purchased many such herbs on her recommendation and have diligently been taking them as prescribed this past week. I am feeling pretty good this week and have been able to resume my visits to the health club; I'm also over the crud. My white count today is 3.8, which is higher than it has been in more than a month and my neutrophil count is similarly up--both good signs. So I presented Dr. Rifkin with my list of herbs I'm taking and asked whether he thought I shouldn't be taking any of them. He says that since we don't know what they will do with the velcade I should stay away from them until we see how I respond to the velcade. We (Susan, Julia and I) are discussing whether I should follow that advice. I suspect they won't harm any positive results from the velcade but might wait a few weeks before resuming the herbal diet to see how I respond to the velcade. On the other hand, I am just as inclined to continue with them as I think they have helped restore my immune system function. Your thoughts will be appreciated.--but not necessarily followed--I always have been a contrarian.
Catherine returned to Boulder today and we miss her already, even though she will be visiting with us 2 or 3 times a week as she will be working part time at her new job in Cherry Creek. Julia returns to school this coming weekend and until then is planning numerous ski trips to our snow laden ski resorts. Susan continues to be the pillar of strength and hope for my continued health--when I returned home from the clinic today she had just completed saying a rosary for me. We all had a great holiday, laughed way too much, and enjoyed just being together.
Friends continue to show up on the blog, which always gives me a smile. I particularly loved hearing that one of my high school friends (yes, you Patti, once again) is teaching the daughter of another of my high school friends (that would be you Howie). Somehow it seems to me that justice would have been better served if Howie had, not only a sweet daughter, but also a son like himself to give him a bit of a challenge comparable to those challenges Howie gave his mom. On the other hand, nothing softens up us "tough guys" more than having a daughter or two to wrap us around their little fingers!
I continue to be optimistic for this coming year and extend my gratitude once again for all our many friends who have supported us through these past 10 months. My best to all of you. Love, Dan
Thursday, January 05, 2006
A New Year's Update
Thank you to everyone for the fine new year's wishes, prayers, and good thoughts. Despite the disappointing news last month, I stay strong in my conviction of the power of prayer and postive affirmations. Keep us in your thoughts and prayers.
Although not much has happened I thought it time for a short update. As I had hoped, Susan and I have had the pleasure of spending much time with Julia and Catherine. Their long holiday break has given us time to just "hang out" together. They even watched the Orange Bowl and Rose Bowl with me, cheering for my favorites along with me. What a treat--and we have 2 more weeks together. In my reentry to the social world, i.e., getting out of the house, I have picked up "the crud". While not usually worthy of discussion, given my low white count (it continues to drop--probably due to the myeloma) I have few resources to fight the bugs. So, this holiday season has given me a few trips to the clinic/hospital, chest xrays and sinus CTs, and antibiotics. I am scheduled to start on the velcade on January 16th and am looking forward to getting some chemical help in fighting this disease--provided the "crud" is under control by then. Our best to you and we'll let you know how things are going once the velcade treatments start. Love, Dan
Although not much has happened I thought it time for a short update. As I had hoped, Susan and I have had the pleasure of spending much time with Julia and Catherine. Their long holiday break has given us time to just "hang out" together. They even watched the Orange Bowl and Rose Bowl with me, cheering for my favorites along with me. What a treat--and we have 2 more weeks together. In my reentry to the social world, i.e., getting out of the house, I have picked up "the crud". While not usually worthy of discussion, given my low white count (it continues to drop--probably due to the myeloma) I have few resources to fight the bugs. So, this holiday season has given me a few trips to the clinic/hospital, chest xrays and sinus CTs, and antibiotics. I am scheduled to start on the velcade on January 16th and am looking forward to getting some chemical help in fighting this disease--provided the "crud" is under control by then. Our best to you and we'll let you know how things are going once the velcade treatments start. Love, Dan
Antarctica
Hey Dan!!
There are people all over the world praying for you. My friends in
Antarctica made up a sign for you and sent it down with one of the
firemedics that flew to the South Pole. There she had her photo taken and
sent it to me yesterday. I need to get this to Ted so it can go in your
book. I hope you can read the sign. It says - "Get Well Soon Dan. Wishing
you all the best from the bottom of the world".
Very cool!
We love you.
P
Wednesday, December 28, 2005
Tough News But We Continue Onward
We saw Dr. Rifkin today and went through the results from the bone marrow biopsy and the bone scan. The transplant is categorized as causing a minimal response. In fact, the degree of cancer/plasma cells in my bone marrow is around 30%, which is what it was in early October, in late August, and early August. We started in late March at 65% so there has been some progress, albeit all prior to August. In essence, the transplant didn't work. So, I will be starting with a new drug: velcade. This chemo regime is part of a clinical trial for which Dr. Rifkin is the principal investigator. I will start in mid January. I receive it through a shot given IV every 1st, 4th, 7th and 11th day--which consitutues one cycle. then a week off. I will go through 4 cycles, which will take about 3 months. The potential side effects include neuropathy (tingling and shooting pains in feet, hands, legs), nausea (which can be dealt with with medication) and low platelets and/or white cells, which they can also deal with. They will monitor my response every 2 weeks. I will also continue with the zometa, and received an IV of that today. As a result of going on the velcade, however, I will have to postpone the prostate surgery as the velcade would intefere with the healing from that surgery. So, I got another shot of the lupron today (hormone). So far, that has been effective in holding back the spread or growth of the prostate cancer.
Dr. Rifkin also said that if my response to velcade is good, then we are probably looking at another transplant in 6 months or so. This time he would like to use stem cells from one of my siblings. So, Mike, Tom and Kathy, you can expect to receive in the next month or so a testing kit or directions or something like that, to ask you to get your blood tested to see if any of you are a match for me. This is called a mini allogeneic transplant and although not as risky as a transplant from a stranger it is still much harder on me than the autologous. But, so be it, if that is what is necessary. I'll just have to work out a little more at the health club before the transplant to get in better shape.
There is a small bit of good news in all this. First, the skeletal survey (bone scan) does not show any further lesions or invasion of the bone by the myeloma as compared to the survey done in August. That survey showed two small lesions in each humerus, which were of no concern to Rifkin. I also learned today that, although I have a genetic abnormality that is at least partially the cause of this myeloma, it is not an abnormality of chromosome 13. An abnormality in that chromosome results in a very poor prognosis. I have known about this for some time, but quite frankly have not wanted to ask my doctor, for fear of the news. But today I asked and got the right answer.
So, I have some work left to do. Susan is quite understandably upset, but doing OK. The girls are also upset but their positivity will return shortly I am sure. (they are both curled up napping on the sofa next to me--wanting to stay close I suspect--this is so hard on them; they are quite understandbly scared, but want so desparately to be strong and supportive for me. As I have said before, this is one of the most painful parts of this--seeing their Dad struggle with this disease) We all know that this is a long road, and sometimes our hopes blur that fact. It has been difficult and I think we would all like a break from the underlying stress of it all, but that does not seem to be in the offing at this point. But, I am still feeling fairly well and hope that I can continue with my health club regime and just being able to go about my life as best I can. Stick with us and someday we will look back, shake our heads at the ordeal we've been through, and tip a glass of wine to our endurance, stamina, perseverance, friendship, love and support. I love you all, and I have confidence that this new year will bring unexpected blessings to us all. Dan
Dr. Rifkin also said that if my response to velcade is good, then we are probably looking at another transplant in 6 months or so. This time he would like to use stem cells from one of my siblings. So, Mike, Tom and Kathy, you can expect to receive in the next month or so a testing kit or directions or something like that, to ask you to get your blood tested to see if any of you are a match for me. This is called a mini allogeneic transplant and although not as risky as a transplant from a stranger it is still much harder on me than the autologous. But, so be it, if that is what is necessary. I'll just have to work out a little more at the health club before the transplant to get in better shape.
There is a small bit of good news in all this. First, the skeletal survey (bone scan) does not show any further lesions or invasion of the bone by the myeloma as compared to the survey done in August. That survey showed two small lesions in each humerus, which were of no concern to Rifkin. I also learned today that, although I have a genetic abnormality that is at least partially the cause of this myeloma, it is not an abnormality of chromosome 13. An abnormality in that chromosome results in a very poor prognosis. I have known about this for some time, but quite frankly have not wanted to ask my doctor, for fear of the news. But today I asked and got the right answer.
So, I have some work left to do. Susan is quite understandably upset, but doing OK. The girls are also upset but their positivity will return shortly I am sure. (they are both curled up napping on the sofa next to me--wanting to stay close I suspect--this is so hard on them; they are quite understandbly scared, but want so desparately to be strong and supportive for me. As I have said before, this is one of the most painful parts of this--seeing their Dad struggle with this disease) We all know that this is a long road, and sometimes our hopes blur that fact. It has been difficult and I think we would all like a break from the underlying stress of it all, but that does not seem to be in the offing at this point. But, I am still feeling fairly well and hope that I can continue with my health club regime and just being able to go about my life as best I can. Stick with us and someday we will look back, shake our heads at the ordeal we've been through, and tip a glass of wine to our endurance, stamina, perseverance, friendship, love and support. I love you all, and I have confidence that this new year will bring unexpected blessings to us all. Dan
Tuesday, December 20, 2005
A Christmas Letter
We have traditionally (at least once every two years) sent a "Christmas Letter" to many of our friends and family at this time of year to bring them up to date on the happenings of our family during the past year. (We still will call this the Christmas letter, even though it may no longer be politically correct) We know that all bloggers have a sense of what this past year has been for us, so we will skip the details of my ordeal and provide the brief summary: 5 hospitalizations, 2 back surgeries, 4 rounds of chemo, 6 to 8 blood transfusions, and, oh yeh, a stem cell transplant. But I am doing better than I have in many many months. I am driving, going to the health club, going out to lunch, going to physical therapy and generally have more independence than I have enjoyed since June. I still struggle with lack of energy and returning to real work remains an insurmountable task. Most recently I just had a skeletal survey (xrays of every bone) and bone marrow biopsy to determine the stage of my disease. Results will be reported next week. That has been my world this year--my health. But as a part of this journey my heart has opened wide and I have received and learned love and compassion as never previously experienced. Read the previous blogs for details. I am very thankful for this holiday season, for feeling better, for my two daughters being home, and for the time our family will spend together.
Julia, our 18 year old, started at Colorado College in Colorado Springs this fall. It is a small liberal arts school nestled in a very conservative community. Classes are on the block system, i.e., taking only one class for 3 1/2 weeks, a 4 day break and then start the next class. She is made for college (and getting away from her parents). In addition to doing well academically, she also is participating in 6 intramural sports, as well as skiing on weekends. She is a quick witted, no nonsense, straight shooting young lady. Look out world!
Catherine, our 22 year old, is in her last year at the University of Colorado at Boulder. She is majoring in Finance and International Business and will graduate in May. She already has a job as a research analyist with a pension consulting firm in Denver, which she will start part time in January and full time in June. She is attending college on a full scholarship and has achieved much success in the past 4 years, not the least of which included working as a research analyst for the famed business author, Jim Collins, ("Built to Last" and "Good to Great".) This work has opened many doors for her. As a result she was being courted by firms in Charlotte, NC, Atlanta, GA, and Los Angeles, but she decided to stay in Denver, primarily because of my health issues. This is one of the most difficult parts of this illness--seeing how it affects my girls. I wish they could go about their lives without having to worry about their Dad. Catherine is also learning how to cook under her mother's tutelage. She has spent the last 3 days making Christmas cookies. Julia and I are encouraging her in this pursuit! Catherine has her mother's heart and brings light to our home every time she visits.
Susan is quite simply an angel and the nicest person I have ever met. Why she married me remains a mystery, but I will gladly be the beneficiary of her lack of judgment. I could not have gotten through these past 7 months without her. She helped me out of bed, washed me, drove me to the doctors, and maintained vigil over me during the many months when I was either too sick to care for myself or too disabled from back problems to walk or even get out of bed. She has been a source of strength and support like no other. Her many friends (she makes friends just walking down the street) have also been tremendous support for her and me. She still has her outrageous laugh and is in good spirits these days. She has had to take on the responsiblity of bill paying, supervising workmen, and many other matters that I used to attend to. Now that I am "coming to" after these long months, she finds my involvement to be "meddling" and sometimes, jokingly says, she preferred me when I was sedated. Not really.
So having to face one of life's most difficult challenges this year, we remain strong. We have become a closer and more loving family. We are so deeply appreciative for all we have received from all of you. My health issues have forced us to confront what our lives are about and how we should be living them. It is no longer an academic pursuit. We have learned that a life lived with love and compassion is our most important purpose. You, our friends and family have taught us this. I wish I had the vocabulary, as well as the time and space, to adequately express how deeply I feel about the important role all of you have played in my recovery this year. We give thanks for you, and all you have done for us, and wish you the very best this holiday season.
Love, Dan, Susan, Catherine & Julia
Julia, our 18 year old, started at Colorado College in Colorado Springs this fall. It is a small liberal arts school nestled in a very conservative community. Classes are on the block system, i.e., taking only one class for 3 1/2 weeks, a 4 day break and then start the next class. She is made for college (and getting away from her parents). In addition to doing well academically, she also is participating in 6 intramural sports, as well as skiing on weekends. She is a quick witted, no nonsense, straight shooting young lady. Look out world!
Catherine, our 22 year old, is in her last year at the University of Colorado at Boulder. She is majoring in Finance and International Business and will graduate in May. She already has a job as a research analyist with a pension consulting firm in Denver, which she will start part time in January and full time in June. She is attending college on a full scholarship and has achieved much success in the past 4 years, not the least of which included working as a research analyst for the famed business author, Jim Collins, ("Built to Last" and "Good to Great".) This work has opened many doors for her. As a result she was being courted by firms in Charlotte, NC, Atlanta, GA, and Los Angeles, but she decided to stay in Denver, primarily because of my health issues. This is one of the most difficult parts of this illness--seeing how it affects my girls. I wish they could go about their lives without having to worry about their Dad. Catherine is also learning how to cook under her mother's tutelage. She has spent the last 3 days making Christmas cookies. Julia and I are encouraging her in this pursuit! Catherine has her mother's heart and brings light to our home every time she visits.
Susan is quite simply an angel and the nicest person I have ever met. Why she married me remains a mystery, but I will gladly be the beneficiary of her lack of judgment. I could not have gotten through these past 7 months without her. She helped me out of bed, washed me, drove me to the doctors, and maintained vigil over me during the many months when I was either too sick to care for myself or too disabled from back problems to walk or even get out of bed. She has been a source of strength and support like no other. Her many friends (she makes friends just walking down the street) have also been tremendous support for her and me. She still has her outrageous laugh and is in good spirits these days. She has had to take on the responsiblity of bill paying, supervising workmen, and many other matters that I used to attend to. Now that I am "coming to" after these long months, she finds my involvement to be "meddling" and sometimes, jokingly says, she preferred me when I was sedated. Not really.
So having to face one of life's most difficult challenges this year, we remain strong. We have become a closer and more loving family. We are so deeply appreciative for all we have received from all of you. My health issues have forced us to confront what our lives are about and how we should be living them. It is no longer an academic pursuit. We have learned that a life lived with love and compassion is our most important purpose. You, our friends and family have taught us this. I wish I had the vocabulary, as well as the time and space, to adequately express how deeply I feel about the important role all of you have played in my recovery this year. We give thanks for you, and all you have done for us, and wish you the very best this holiday season.
Love, Dan, Susan, Catherine & Julia
Wednesday, December 14, 2005
Laughter Continues to Be the Best Medicine
Last night I couldn't sleep, so I toss and turn and toss and turn. Susan does the old Jackie Gleason attack on Norton (me), "will you knock it off". Soon, we are chatting,laughing, giggling and wondering how we can laugh so hard in the midst of such chaos. No answer to that question, but our spirits have definitely picked up since a few months ago. Our friend, Gail, had lunch with us the other day and called me soon after to say it is obvious Susan and I are more in love now than we ever were. As Susan says, all my hard edges are gone and I'm back to being the nice guy she married (I want to know who she thinks I was all those years in between, as I am sure I was not as bad as she is trying to create). Our spirits are good as we go into the holiday season.
Saw Dr. Rifkin today and all the blood counts are good: white cells, neutrophils, red cells and platelets are all strong. Bone marrow biopsy is scheduled for 12/20--this will be my 4th. I think I also will have a full body bone scan. We asked that the appointment to review all the "numbers" be delayed until after Susan's birthday (12/23) and Christmas--so we will see Dr. Rifkin on December 28 to see where we are after the transplant. Until then, and even after then, regardless of the news, we will be in good cheer and we wish same for you. Happy Holidays, Dan
Saw Dr. Rifkin today and all the blood counts are good: white cells, neutrophils, red cells and platelets are all strong. Bone marrow biopsy is scheduled for 12/20--this will be my 4th. I think I also will have a full body bone scan. We asked that the appointment to review all the "numbers" be delayed until after Susan's birthday (12/23) and Christmas--so we will see Dr. Rifkin on December 28 to see where we are after the transplant. Until then, and even after then, regardless of the news, we will be in good cheer and we wish same for you. Happy Holidays, Dan
Friday, December 09, 2005
The Next Surgery
Well, we now have a date scheduled for my radical prostatectomy--February 7th. My urologist will be doing the surgery laproscopically so that he expects I will only be in the hospital over night. Recovery is anticipated to be 4 to 5 weeks. I won't go into the details here for those of you who are less curious, but there are, of course, potential complications. But my prostate cancer was diagnosed relatively early --it is Stage II B and is located on only one side of the gland and is not in the margins--all good signs. In addition, while my multiple myeloma was being treated I received 2 hormone shots to contain and prevent any spread of the prostate cancer. In fact, the hormone shots shrunk the tumor, which is also a good result. In light of all that I have gone through over the last 9 months, this next procedure feels manageable. I am glad the surgery won't occur until February as that will allow us to enjoy the holidays.
No further news on the myeloma front; next appointment is 12/14 and I'm not sure whether I will get any new info at that time. We'll probably schedule the bone marrow biopsy for later in the year or first part of next year. I continue to gain strength and am trying not to push myself too hard in the recovery effort. I do try to get the health club daily to walk, ride the bike and occasionally lift weights. I am dragging Susan with me--I think she wants me to go back to work! It feels so slow and some days I get slammed with a lack of energy, which always surprises me. I've also started physical therapy and am getting some help in relieving the soreness and stiffness in the back.
We are so looking forward to having the 2 girls (young ladies) home for the holidays. Susan already has the Christmas tree up and her brother, "Uncle Gary," has sent more boxes of presents than we have room for. His generosity always overwhelms us and this year he appears to have outdone himself.
I'll let you know what happens at next week's visit with Dr. Rifkin. In the meantime, enjoy the holiday spirit. Love, Dan
No further news on the myeloma front; next appointment is 12/14 and I'm not sure whether I will get any new info at that time. We'll probably schedule the bone marrow biopsy for later in the year or first part of next year. I continue to gain strength and am trying not to push myself too hard in the recovery effort. I do try to get the health club daily to walk, ride the bike and occasionally lift weights. I am dragging Susan with me--I think she wants me to go back to work! It feels so slow and some days I get slammed with a lack of energy, which always surprises me. I've also started physical therapy and am getting some help in relieving the soreness and stiffness in the back.
We are so looking forward to having the 2 girls (young ladies) home for the holidays. Susan already has the Christmas tree up and her brother, "Uncle Gary," has sent more boxes of presents than we have room for. His generosity always overwhelms us and this year he appears to have outdone himself.
I'll let you know what happens at next week's visit with Dr. Rifkin. In the meantime, enjoy the holiday spirit. Love, Dan
Thursday, December 01, 2005
Zometa, IGG's, and Physical Therapy, but Feeling Well
Ah, the long awaited doctor's visit. The white cells, although down a bit, are fine, red cells are up and platelets are way up. I received an IV of zometa today, which is a bone strengthening drug. Much more info on zometa is set forth below. The infamous IGG's are unfortunately trending UP, not Down. Went from 2440 to 3200. But my doctor was adamant that I should not concern myself with this, as there are way too many factors that could account for this...including the fact that my body is producing good immunoglobulins which could be counted in this number. He plans to do a much more definite and comprehensive blood test next visit (but not a bone marrow biopsy). Notwithstanding his dismissal of these numbers, I was disappointed as I know he would liked to have seen a downward, not upward trend. I did pull one of the nurses aside after I received the IV of zometa and grilled her a bit more on the numbers. She, who is a straight shooter, also told me they have many patients whose numbers don't move downward after transplant but they are able to control their myeloma with maintenance drugs. It would not surprise me to be put back on the steroid, dexamethasone, which was very effective in my early treatment in bringing the IGG's way down. I don't particularly like my body's response to the dex (shakes, and irritability), but it was quite effective. There is apparently a study by the French that shows this to be an effective measure following transplant. Ah, it is the acceptance of the fact that this is a long voyage that is so difficult at times. I am also going to start physical therapy for my back to relieve some of the stiffness and can return to the health club to try to get back into shape (staying out of the hot tub and pool). I also am likely to have my prostate surgery within the next month or so. Dr. Rifkin asked that I get back in touch with my urologist and get that going. He suggested we might try to do that around the same time as the restaging (bone marrow biopsy, etc.) So, it looks like the holidays may be busy. But I feel better every day and now that I can start working out and going to physical therapy I will probably start feeling even better. Today feels like one of those difficult days. But Susan refuses to be lead down the negative path--"I know you'll be fine and you can't pay attention to those numbers", she tells me. So, I will accept that approach--after a good night's sleep. Next visit is December 14th.
Zometa (zoledronic acid)
What It Is
Zometa® (zoledronic acid) is an intravenous, nitrogen-containing bisphosphonate marketed by Novartis Pharmaceuticals. It was initially approved in the US in 2001 for the treatment of hypercalcemia of malignancy (HCM), also known as tumor-induced hypercalcemia (TIH). It was approved in 2002 for the treatment of bone lesions in myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard cancer therapy.
Zoledronic acid is 100-fold more potent than pamidronate. Because of this fact, the dose of zoledronic acid required is substantially lower and can be administered in a shorter period of time than pamidronate (15 minutes versus 2-4 hours).
What It Does
Zoledronic acid inhibits bone resorption, which is the breakdown of bone by osteoclasts. Although the exact mechanism of action is not completely understood, several things are thought to occur. In the laboratory, zoledronic acid inhibits osteoclast activity and induces apoptosis (programmed cell death) of osteoclasts. It also binds to bone and may block resorption. In addition, zoledronic acid inhibits the increased osteoclast activity and skeletal calcium release induced by various stimulatory factors released by tumors.
How It Is Administered
Zoledronic acid is administered as an intravenous infusion. The recommended dosage in patients with myeloma is 4 mg administered as a 15-minute infusion, given every 3 to 4 weeks. The optimal duration of therapy is not yet known. However, in clinical studies in myeloma, patients were treated for up to 12 months, and patients have received the drug for longer periods of time. Data from long-term administration (24 months of therapy) have been submitted to the regulatory authorities.
Patients receiving zoledronic acid should also take an oral calcium supplement of 500 mg and a multiple vitamin containing 400 IU of vitamin D daily.
Benefits in Myeloma
Zoledronic acid has been shown to be more effective than pamidronate in normalizing serum calcium levels in patients with hypercalcemia of malignancy. In 2 studies that were analyzed together, zoledronic acid (4 mg) normalized calcium by day 10 in 88% of patients compared to 70% with pamidronate. In addition, the median duration of response was significantly longer with zoledronic acid (32 days compared to 18 days). (Major et al. J Clin Oncol. 2001;19:558-567.)
In patients with myeloma, various studies have shown that zoledronic acid is as effective as pamidronate in treating bone lesions. For example
Zoledronic acid and pamidronate each reduced the number of skeletal events and the need for radiation therapy to bone in a study of patients with myeloma. (Berenson et al. Cancer. 2001;91:1191-2000.)
Results of a Phase III trial comparing zoledronic acid and pamidronate showed equal efficacy and tolerability of the drugs in the treatment of bone lesions in myeloma and breast cancer over the period of 1 year. (Rosen et al. Cancer J. 2001;7(5):377-387). Long-term (25 month) data from the study showed that both agents reduced the overall proportion of patients with a skeletal event. However, compared with pamidronate, zoledronic acid reduced the risk of developing skeletal complications (including hypercalcemia) as determined by multiple event analysis by an additional 16%. In patients with breast cancer, zoledronic acid was significantly more effective than pamidronate, reducing the risk of skeletal events by an additional 20% compared with pamidronate and by an additional 30% in patients receiving hormonal therapy. (Rosen et al. Cancer. 2003;98(8):1735-1744.)
Results of a small Phase II study in elderly patients with symptomatic refractory myeloma showed that the combination of zoledronic acid and targeted radiotherapy (Quadramet® [Samarium Sm-153 lexidronam], Cytogen) was an effective palliative option. For the eight patients in the study, one to three courses of therapy with these two agents was sufficient to produce long-term improvement in symptoms, particularly bone pain. (Iuliano et al. J Clin Oncol. 2004;22(14S). Abstract 6737.) Patients received a standard dose of 4 mg of zoledronic acid every 4 weeks and slightly more than half of the standard dose of Quadramet. No severe adverse effects were noted; two patients experienced transient grade 2 hematologic toxicity. Interestingly, M-protein levels decreased more than 25% in 4 out of the 8 patients and were still stable at 19 months follow up.
• Get more information on bone disease in myeloma
Guidelines for Use of Zometa in Myeloma
In September 2002, the American Society of Clinical Oncology (ASCO) published clinical practice guidelines for the use of bisphosphonates in the prevention and treatment of bone disease in myeloma. (Berenson et al. J Clin Oncol. 2002;20:3719-3736.) Upon review of published literature, the expert panel agreed that bisphosphonates reduce skeletal complications and provide a meaningful support benefit to myeloma patients with bone disease.
For patients who have bone lesions or bone loss, the guidelines recommend the use of intravenous zoledronic acid (Zometa) 4 mg infused over 15 minutes or pamidronate (Aredia®) 90 mg infused over 2 hours every 3 to 4 weeks. These bisphosphonates may also be used as part of a pain management strategy. The guidelines recommend that therapy, once started, be continued until the likely benefit is believed to be less than the inconvenience of receiving the treatment or until significant side effects are experienced.
• Get the complete summary of the guidelines for bisphosphonates
Potential Antitumor Effects
Zoledronic acid also appears to have several potential antitumor effects. For example,
It reduces the secretion of the growth factor interleukin 6 (IL-6) by myeloma cells grown in the laboratory. IL-6 is known to play an important role in the growth and survival of myeloma cells
In laboratory studies, zoledronic acid inhibited growth and induced apoptosis (programmed cell death) in human myeloma cell lines
Zoledronic acid exerted antimyeloma effects in mice that had implants of human myeloma cells growing in human bone fragments. (Yaccoby et al. Br J Haematol. 2002;116(2):278-290.)
When combined with dexamethasone in the laboratory, the effect of zoledronic acid on inhibiting growth and inducing apoptosis of myeloma cells was enhanced. (Tassone et al. Leukemia. 2000;14:841-844.)
The drug inhibited angiogenesis (the growth of new blood vessels) in an animal model. (Wood et al. Proc 36th ASCO Annual Meeting, New Orleans. 2000;19:664a.)
It is able to prevent the development of bone disease in a mouse model of myeloma. In this model, treatment with zoledronic acid was associated with a decrease in tumor burden and a significant increase in disease-free survival. (Croucher et al. J Bone Miner Res. 2003;18(3):482-492.)
Zoledronic acid appears to affect bone marrow stromal cells taken from patients with active myeloma, which could contribute to its antitumor effects. In the lab, the agent reduced bone marrow stromal cell proliferation, increased apoptosis, and modified the expression of adhesion molecules on their surface. (Corso et al. Blood. 2003;102(11). Abstract 1619.)
In blood cells taken from patients with myeloma, zoledronic acid induced anti-myeloma activity by activating a particular type of T cell. Zoledronic acid also enhanced the sensitivity of myeloma cells to killing by these T cells. (Mariani S et al. Leukemia. 2005 Mar 3. [Epub ahead of print])
However, it is not known whether zoledronic acid has the same effects in patients with myeloma.
Potential Side Effects
Zoledronic acid is generally well tolerated and the side effects are similar to those seen with pamidronate. Some patients may experience mild and transient side effects, such as fever, flu-like symptoms, fatigue, gastrointestinal effects, or anemia, which may be related to their underlying disease. Although rare, long-term use of the drug at higher doses or zoledronic acid infused in less than
15 minutes can affect the kidneys. For this reason, patients who receive zoledronic acid should have serum creatinine assessed prior to each treatment. In addition, serum calcium, electrolytes, phosphate, magnesium, and hematocrit/hemoglobin should also be monitored regularly.
Upon treatment initiation, dosage adjustments are recommended in myeloma patients with mild or moderate kidney impairment. (See How It Is Administered.) Treatment with zoledronic acid is not recommended in patients with severe kidney impairment because studies in this patient population have not been conducted. In myeloma, the risk of kidney dysfunction may be increased when it is used in combination with thalidomide or drugs known to affect kidney function (ie, nonsteroidal antiinflammatory drugs). There are animal data to suggest there can be a problem when bisphosphonates are administered during pregnancy. Therefore, zoledronic acid should not be used during pregnancy unless a physician feels the benefits outweigh the risks.
Long-term therapy with zoledronic acid appears to be safe. Results of a recent study of 22 patients who received intravenous zoledronic acid or pamidronate for up to 6 years found that prolonged therapy was well tolerated. No significant calcium, phosphorus, electrolyte, or WBC count abnormalities were seen. A clinically insignificant decrease in hemoglobin and platelet count and an increase in creatinine were observed. There were no stress fractures of long bones with prolonged therapy and the fracture rate beyond 2 years was no greater than during the first 2 years of treatment. (Ali et al. J Clin Oncol. 2001;19:3434-3437.)
A number of cases of painful exposed bone in the jaw (a condition called osteonecrosis of the jaw) have been reported in patients receiving intravenous bisphosphonates (pamidronate or zoledronic acid) for hypercalcemia of malignancy related to myeloma or breast cancer. (Marx RE. J Oral Maxillofax Surg. 2003;61:1115-1118.) However, cancer patients in general are at increased risk for this condition due to other therapies they may receive, such as radiation, chemotherapy, and medications such as steroids. (Tarassoff P. J Oral Maxillofax Surg. 2003;61:1238-1239.) Although no cause and effect relationship between bisphosphonates and osteonecrosis has been established, it is recommended that cancer patients take adequate steps to maintain their oral health. This includes practicing good oral hygiene and scheduling regular dental visits. Patients may want to complete major dental procedures before they begin treatment with bisphosphonates. If a dental problem does occur, the least invasive conservative management strategy is preferred.
Ongoing Clinical Trials
Trials are evaluating the use of zoledronic acid as an integral part of a treatment regimen for patients with early-stage or newly diagnosed myeloma to see if it can help prevent or delay the development of bone lesions. An additional trial is being conducted to determine the effect of zoledronic acid on the bone density of patients with bone loss with monoclonal gammopathy of undetermined significance (MGUS).
A study is also being conducted to investigate if lengthening the duration of infusion, in conjunction with increased volume of liquid the zoledronic acid is administered in, will provide renal protective effects.
The combination of zoledronic acid and the targeted radiotherapeutic Quadramet® (Samarium Sm-153 lexidronam, Cytogen) is being evaluated for the treatment of pain associated with metastatic bone disease in patients with recurrent or refractory myeloma.
Ongoing zoledronic acid clinical trials in myeloma are listed in the table below.
Ongoing Zometa Clinical Trials in Myeloma as of May 2005
Phase IV
A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa (zoledronic acid) 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
UARK 2004-43, A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
Phase III
A Phase III Randomized Trial of Thalidomide plus Zoledronic Acid versus Zoledronic Acid Alone in Patients with Early Stage Multiple Myeloma
• View trial information
Phase II
First-line Treatment of Newly Diagnosed Multiple Myeloma with Combination of Low Dose Thalidomide, Zometa, and Dexamethasone
• View trial information
Phase I/II
A Phase I/II Trial of Zometa in Patients with Monoclonal Gammopathy of Undetermined Significance (ZOMGUS-001)
• View trial information
Zometa (zoledronic acid)
What It Is
Zometa® (zoledronic acid) is an intravenous, nitrogen-containing bisphosphonate marketed by Novartis Pharmaceuticals. It was initially approved in the US in 2001 for the treatment of hypercalcemia of malignancy (HCM), also known as tumor-induced hypercalcemia (TIH). It was approved in 2002 for the treatment of bone lesions in myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard cancer therapy.
Zoledronic acid is 100-fold more potent than pamidronate. Because of this fact, the dose of zoledronic acid required is substantially lower and can be administered in a shorter period of time than pamidronate (15 minutes versus 2-4 hours).
What It Does
Zoledronic acid inhibits bone resorption, which is the breakdown of bone by osteoclasts. Although the exact mechanism of action is not completely understood, several things are thought to occur. In the laboratory, zoledronic acid inhibits osteoclast activity and induces apoptosis (programmed cell death) of osteoclasts. It also binds to bone and may block resorption. In addition, zoledronic acid inhibits the increased osteoclast activity and skeletal calcium release induced by various stimulatory factors released by tumors.
How It Is Administered
Zoledronic acid is administered as an intravenous infusion. The recommended dosage in patients with myeloma is 4 mg administered as a 15-minute infusion, given every 3 to 4 weeks. The optimal duration of therapy is not yet known. However, in clinical studies in myeloma, patients were treated for up to 12 months, and patients have received the drug for longer periods of time. Data from long-term administration (24 months of therapy) have been submitted to the regulatory authorities.
Patients receiving zoledronic acid should also take an oral calcium supplement of 500 mg and a multiple vitamin containing 400 IU of vitamin D daily.
Benefits in Myeloma
Zoledronic acid has been shown to be more effective than pamidronate in normalizing serum calcium levels in patients with hypercalcemia of malignancy. In 2 studies that were analyzed together, zoledronic acid (4 mg) normalized calcium by day 10 in 88% of patients compared to 70% with pamidronate. In addition, the median duration of response was significantly longer with zoledronic acid (32 days compared to 18 days). (Major et al. J Clin Oncol. 2001;19:558-567.)
In patients with myeloma, various studies have shown that zoledronic acid is as effective as pamidronate in treating bone lesions. For example
Zoledronic acid and pamidronate each reduced the number of skeletal events and the need for radiation therapy to bone in a study of patients with myeloma. (Berenson et al. Cancer. 2001;91:1191-2000.)
Results of a Phase III trial comparing zoledronic acid and pamidronate showed equal efficacy and tolerability of the drugs in the treatment of bone lesions in myeloma and breast cancer over the period of 1 year. (Rosen et al. Cancer J. 2001;7(5):377-387). Long-term (25 month) data from the study showed that both agents reduced the overall proportion of patients with a skeletal event. However, compared with pamidronate, zoledronic acid reduced the risk of developing skeletal complications (including hypercalcemia) as determined by multiple event analysis by an additional 16%. In patients with breast cancer, zoledronic acid was significantly more effective than pamidronate, reducing the risk of skeletal events by an additional 20% compared with pamidronate and by an additional 30% in patients receiving hormonal therapy. (Rosen et al. Cancer. 2003;98(8):1735-1744.)
Results of a small Phase II study in elderly patients with symptomatic refractory myeloma showed that the combination of zoledronic acid and targeted radiotherapy (Quadramet® [Samarium Sm-153 lexidronam], Cytogen) was an effective palliative option. For the eight patients in the study, one to three courses of therapy with these two agents was sufficient to produce long-term improvement in symptoms, particularly bone pain. (Iuliano et al. J Clin Oncol. 2004;22(14S). Abstract 6737.) Patients received a standard dose of 4 mg of zoledronic acid every 4 weeks and slightly more than half of the standard dose of Quadramet. No severe adverse effects were noted; two patients experienced transient grade 2 hematologic toxicity. Interestingly, M-protein levels decreased more than 25% in 4 out of the 8 patients and were still stable at 19 months follow up.
• Get more information on bone disease in myeloma
Guidelines for Use of Zometa in Myeloma
In September 2002, the American Society of Clinical Oncology (ASCO) published clinical practice guidelines for the use of bisphosphonates in the prevention and treatment of bone disease in myeloma. (Berenson et al. J Clin Oncol. 2002;20:3719-3736.) Upon review of published literature, the expert panel agreed that bisphosphonates reduce skeletal complications and provide a meaningful support benefit to myeloma patients with bone disease.
For patients who have bone lesions or bone loss, the guidelines recommend the use of intravenous zoledronic acid (Zometa) 4 mg infused over 15 minutes or pamidronate (Aredia®) 90 mg infused over 2 hours every 3 to 4 weeks. These bisphosphonates may also be used as part of a pain management strategy. The guidelines recommend that therapy, once started, be continued until the likely benefit is believed to be less than the inconvenience of receiving the treatment or until significant side effects are experienced.
• Get the complete summary of the guidelines for bisphosphonates
Potential Antitumor Effects
Zoledronic acid also appears to have several potential antitumor effects. For example,
It reduces the secretion of the growth factor interleukin 6 (IL-6) by myeloma cells grown in the laboratory. IL-6 is known to play an important role in the growth and survival of myeloma cells
In laboratory studies, zoledronic acid inhibited growth and induced apoptosis (programmed cell death) in human myeloma cell lines
Zoledronic acid exerted antimyeloma effects in mice that had implants of human myeloma cells growing in human bone fragments. (Yaccoby et al. Br J Haematol. 2002;116(2):278-290.)
When combined with dexamethasone in the laboratory, the effect of zoledronic acid on inhibiting growth and inducing apoptosis of myeloma cells was enhanced. (Tassone et al. Leukemia. 2000;14:841-844.)
The drug inhibited angiogenesis (the growth of new blood vessels) in an animal model. (Wood et al. Proc 36th ASCO Annual Meeting, New Orleans. 2000;19:664a.)
It is able to prevent the development of bone disease in a mouse model of myeloma. In this model, treatment with zoledronic acid was associated with a decrease in tumor burden and a significant increase in disease-free survival. (Croucher et al. J Bone Miner Res. 2003;18(3):482-492.)
Zoledronic acid appears to affect bone marrow stromal cells taken from patients with active myeloma, which could contribute to its antitumor effects. In the lab, the agent reduced bone marrow stromal cell proliferation, increased apoptosis, and modified the expression of adhesion molecules on their surface. (Corso et al. Blood. 2003;102(11). Abstract 1619.)
In blood cells taken from patients with myeloma, zoledronic acid induced anti-myeloma activity by activating a particular type of T cell. Zoledronic acid also enhanced the sensitivity of myeloma cells to killing by these T cells. (Mariani S et al. Leukemia. 2005 Mar 3. [Epub ahead of print])
However, it is not known whether zoledronic acid has the same effects in patients with myeloma.
Potential Side Effects
Zoledronic acid is generally well tolerated and the side effects are similar to those seen with pamidronate. Some patients may experience mild and transient side effects, such as fever, flu-like symptoms, fatigue, gastrointestinal effects, or anemia, which may be related to their underlying disease. Although rare, long-term use of the drug at higher doses or zoledronic acid infused in less than
15 minutes can affect the kidneys. For this reason, patients who receive zoledronic acid should have serum creatinine assessed prior to each treatment. In addition, serum calcium, electrolytes, phosphate, magnesium, and hematocrit/hemoglobin should also be monitored regularly.
Upon treatment initiation, dosage adjustments are recommended in myeloma patients with mild or moderate kidney impairment. (See How It Is Administered.) Treatment with zoledronic acid is not recommended in patients with severe kidney impairment because studies in this patient population have not been conducted. In myeloma, the risk of kidney dysfunction may be increased when it is used in combination with thalidomide or drugs known to affect kidney function (ie, nonsteroidal antiinflammatory drugs). There are animal data to suggest there can be a problem when bisphosphonates are administered during pregnancy. Therefore, zoledronic acid should not be used during pregnancy unless a physician feels the benefits outweigh the risks.
Long-term therapy with zoledronic acid appears to be safe. Results of a recent study of 22 patients who received intravenous zoledronic acid or pamidronate for up to 6 years found that prolonged therapy was well tolerated. No significant calcium, phosphorus, electrolyte, or WBC count abnormalities were seen. A clinically insignificant decrease in hemoglobin and platelet count and an increase in creatinine were observed. There were no stress fractures of long bones with prolonged therapy and the fracture rate beyond 2 years was no greater than during the first 2 years of treatment. (Ali et al. J Clin Oncol. 2001;19:3434-3437.)
A number of cases of painful exposed bone in the jaw (a condition called osteonecrosis of the jaw) have been reported in patients receiving intravenous bisphosphonates (pamidronate or zoledronic acid) for hypercalcemia of malignancy related to myeloma or breast cancer. (Marx RE. J Oral Maxillofax Surg. 2003;61:1115-1118.) However, cancer patients in general are at increased risk for this condition due to other therapies they may receive, such as radiation, chemotherapy, and medications such as steroids. (Tarassoff P. J Oral Maxillofax Surg. 2003;61:1238-1239.) Although no cause and effect relationship between bisphosphonates and osteonecrosis has been established, it is recommended that cancer patients take adequate steps to maintain their oral health. This includes practicing good oral hygiene and scheduling regular dental visits. Patients may want to complete major dental procedures before they begin treatment with bisphosphonates. If a dental problem does occur, the least invasive conservative management strategy is preferred.
Ongoing Clinical Trials
Trials are evaluating the use of zoledronic acid as an integral part of a treatment regimen for patients with early-stage or newly diagnosed myeloma to see if it can help prevent or delay the development of bone lesions. An additional trial is being conducted to determine the effect of zoledronic acid on the bone density of patients with bone loss with monoclonal gammopathy of undetermined significance (MGUS).
A study is also being conducted to investigate if lengthening the duration of infusion, in conjunction with increased volume of liquid the zoledronic acid is administered in, will provide renal protective effects.
The combination of zoledronic acid and the targeted radiotherapeutic Quadramet® (Samarium Sm-153 lexidronam, Cytogen) is being evaluated for the treatment of pain associated with metastatic bone disease in patients with recurrent or refractory myeloma.
Ongoing zoledronic acid clinical trials in myeloma are listed in the table below.
Ongoing Zometa Clinical Trials in Myeloma as of May 2005
Phase IV
A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa (zoledronic acid) 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
UARK 2004-43, A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
Phase III
A Phase III Randomized Trial of Thalidomide plus Zoledronic Acid versus Zoledronic Acid Alone in Patients with Early Stage Multiple Myeloma
• View trial information
Phase II
First-line Treatment of Newly Diagnosed Multiple Myeloma with Combination of Low Dose Thalidomide, Zometa, and Dexamethasone
• View trial information
Phase I/II
A Phase I/II Trial of Zometa in Patients with Monoclonal Gammopathy of Undetermined Significance (ZOMGUS-001)
• View trial information
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