Monday, December 28, 2009
I continue to have trouble with the revlimid, such as nausea, vomiting, headache, and fever. These seem to occur during the first week of the cycle and then decrease. It all feels manageable in light of the Arkansas experience as well as the progress being made.
I asked Rifkin today how I could have such a good response to one drug, when 15 high dose drugs were basically ineffective. His response: "That just shows you how much we don't understand about myeloma." I also asked if my response was such that I might have other options, rather than another transplant. The answer: "No." He explained that he hopes to have my myeloma low and stable enough such that I will be a perfect candidate for the transplant. Trying some other treatment which might not work could put me in a position where I would no longer be a candidate for transplant and then I would be out of options. I was close to that upon returning from Arkansas when my red cells, white cells, and platelets were all so low. If they hadn't recovered to the degree they have, I couldn't have a transplant.
I'll probably go through one or two more cycles, then we'll be off to M.D. Anderson. Still no word on which brother gets the privilege of being my donor. Happy New Year everyone. 2010 is just around the corner.
Monday, December 21, 2009
After one cycle of revlimid (3 weeks), the IGGs have dropped from 4600 to 2700. This is tremendous. I also find this response most curious. The super BEAM plus chemo I received prior to transplant in Arkansas consisted of 9 drugs: Carmustine (BCNU), etoposide, Cytarabine, melphalan, thalidomide, velcade, dexamethasone, rapamycin (immunosuppressant) and one more drug, which escapes me; all given at maximum dosage over a 5 day period. The result was a drop in IGGs to 2500, which lasted a week or two at most and then they started climbing again, and a drop in white count to 00, which took me months to bring back. The Super BEAM plus was administered after I had already been given 5 days of 7 drugs, also in high dose, followed by 14 days of low dose chemo with only 3 drugs. So I invite all you more biologically/pharmacologically inclined readers to explain to me how a relatively low dose of revlimid, coupled with a moderate to heavy dose of prednisone can achieve results comparable to those 15 toxins I received in Arkansas.
So what does this all mean vis-a-vis future treatment? Assuming some continued response, which Rifkin seems to expect, my cancer levels are expected to go down to a level that will increase the likelihood of some success with the transplant from one of my brothers. I told Rifkin today I wanted to drive this myeloma into the basement with this revlimid therapy, before the transplant, in order to reduce the amount of disease the new cells would have to eradicate. The complicating factor is my white count. It dropped to 1900 (1.9) and my neutrophils (the really good white cells) are at 1000. I'm officially neutropenic (abnormally low white cell count). Rifkin wants to continue the revlimid therapy at the current dosage (15mg) in light of the good response, but warned me to stay away from crowds, wash hands, stay away from sick people, etc. etc. I think that's why I get sent to the hospital whenever something like pneumonia shows up. Counts will be checked in a week.
Other blood work looks good and the creatinine (indicates kidney function) is back to 1.3 (high end of normal).
Still no word on which brother's stem cells will be used, but momentum seems to be building for that cage fight. Trash talking between the bros has already started.
Best to all of you.
Thursday, December 17, 2009
Blood work this week was good for me. White count 2.7, which is good for me when I'm on chemo; hemoglobin 10.2, hematocrit 32 (quite good for me on therapy) and platelets 71--stable. No word on IGGs. They'll be measured this Monday when I start cycle 2, results probably after Christmas.
This week I'm off revlimid, which is nice. That little pill really tires me out and makes me lightheaded. I function on it, but when I get off it, I realize the work involved in day to day activities. My skin is once again peeling off and I haven't been sunning myself. I feel like a snake--molting. What's up with that? My neuropathies are also worsening. The left foot continues to lose feeling. I think that as the years go on and therapies get piled on top of one another, my tolerance lessens. That being said, I always tell my doctor I'm doing fine. I have few options left and do not want to provide any basis for either discontinuing the treatment or reducing the dosage. Numb feet presents all kinds of opportunities. Walking on hot coals; walking barefoot on the ice; wearing shoes 2 sizes too small, kicking the walls, etc. The circus beckons. On the other hand the numbness will likely interfere with my workouts on the balance beam and pogo stick.
The pneumonia is gone, I think. Chest x ray today will tell the tale.
That's it friends. Have a great holiday, Christmas, Hannukah or whatever you celebrate. We wish for you much love, peace, and prosperity for the coming year and are filled with gratitude we have such a wide circle of fine family and friends.
Wednesday, December 09, 2009
I also had a relatively good meeting with my orthopedic surgeon this week. He continues not to want to do anything surgically, which is OK with me. He also showed me on the PET scan and MRI films that the new lesions on the arms and legs aren't really very bad. In fact, you can see the evidence of myeloma in the marrow portion of the bones, but it has not worked its way into any destruction of the bone. So, if the revlimid works, perhaps the bone marrow will heal and no bone will be eroded. I do have one vertebra pushing very close to the spinal cord, but no symptoms of cord involvement. So that's a good thing, too. We ended on a positive note with him exclaiming that for a patient with myeloma I am doing great.
Kidney function is improving. Creatinine is down to 1.4, almost within normal limits. If I drink any more water I'm going to float away!
This pneumonia did have one positive aspect which is it caused my white count to go up. All the way to 6.2. Now that is right in the middle of normal, but for me, as my doctor said, its akin to a normal person being at 25. The good part is that my marrow was able to muster a response to the infection. Something is working in the marrow, which is more than could be said 5 months ago.
I finish up the first cycle of revlimid this week. We'll check the IGGs when I start my second cycle, although no progress doesn't mean it's not working. Sometimes it takes 6 weeks or so to see movement.
That's the status for now. Best wishes to everyone, happy holidays, and I sure wish it would warm up. I am reminded, with this 0 degree weather, why I left North Dakota. Apparently I didn't go far enough south.
Wednesday, December 02, 2009
I've found some relief from the dizziness and headache--sleep. I've been tryng to get through the days without my afternoon naps but have realized that depriving myself of the 2 hour nap in the afternoon was leading to the headaches. So I've resumed my napping and my head has settled down.
The revlimid is also causing more neuropathies. But, I've found a temporary solution for that as well. A heating pad beneath my feet at night seems to help with the pain, keep my feet warm and reduce the muscle cramping in my lower legs. I can't believe I've wrestled with cold feet for the past 3 years when such a simple solution lay at my feet, so to speak.
In addition to the blood counts, we're also watching the measures of my kidney and liver function, creatinine being the main one. My creatinine was slightly elevated when I returned from Little Rock. 1.0 being perfect and I was at 1.2. It has now risen to 1.6, which is too high. So far no remedy other than being told to drink more water. We have to be vigilant as the chemo and the myeloma are known to adversely affect kidney function. I've also got much more iron in me than I need. This is due to the multiple transfusions and is also a trait of the myeloma--it holds onto iron apparently. So that requires another drug in the morning before I eat. That drug has some awful side effects, but we're muddling our way through.
As the years go by with this nastiness it does feel that the complications and side effects become more complex. I still bounce back but it does seem the bounce isn't as high as in the early years. I'm sure my age is a contributing factor. We're not getting any younger, as they say. Which reminds me; I watched the Rock & Roll Hall of Fame concert the other night on HBO. OMG, does Mick Jagger look tired!! That Rolling Stone has rolled a little too long. And with that, I'll close for now. ROCK & ROLL.
Tuesday, December 01, 2009
It's too early to know if the drug is having any effect on the cancer. That will take 6 weeks or longer. Rifkin continues to look for other options and told me he is meeting with some Japanese pharmaceutical reps to see if he can get HSP 90 (a drug that has gone through clinical trials and had some success, but for reasons I don't understand, is not being produced anymore). This is supposed to be a nontoxic chemo, ie., no side effects. Wouldn't that be nice?
We had a great Thanksgiving. As usual Susan prepared a feast fit for an army and we all indulged ourselves for days on her great cooking. My mom and her husband came down from North Dakota and we were also joined by my nephew, Rob Scheeler (who is in grad school at CU) and his girlfriend, as well as a few other friends. This was the first visit with my mother since we headed off to Little Rock, so it was long overdue and we had much ground to cover. We did our best, spending long hours around the table. Julia especially likes to hear of the exploits of my brothers, sister and me when we were young. It was mostly stories about Tom and Mike misbehaving, however, as I was usually at church, doing my duties as an altar boy.
And that's the status this Thanksgiving. Continuing on our journey, one day at a time.
Best wishes to all for a peaceful holiday season.
Friday, November 13, 2009
Given that I don't qualify for any pomalidomide trials at this time, this is about the only option available. The results of all the testing show that my disease is progressing. While the bone marrow biopsy showed only 22.5% plasma cells, Rifkin was quick to discount that since myeloma grows in a swiss cheese like pattern. So the biopsy can hit a pocket with high concentration of myeloma, or a very low degree of myeloma. Remember the "if it's too good to be true, then it's likely not true" posting while in Arkansas when my plasma cells went from 90% to 5%? Right. There were some good numbers tucked in the biopsy results and as he said, "the prednisone did its job," which is to hold my myeloma in check while my blood counts stabilized. There is still concern about what the revlimid might do to the blood counts since my bone marrow doesn't work as well anymore.
And then there were all the bone studies, which is really what showed the progression of the myeloma. I have multiple new compression fractures in my back. This was a surprise to me since I thought that all my vertebra were already fractured from T1 all the way down to L5. Well, if they weren't before, they are now. A couple of troubling spots that made Rifkin plead with me to go see my orthopedic surgeon. I avoid those exams as they are so painful as he pushes on each individual vertebra to determine its stability and my degree of pain at each level. I used to come home from those exams and take a percocet or dilaud. So, here we go again. The MRI and PET scan also showed more lesions in the humerus (upper arm), femur (thigh), sternum, and ribs. These are areas where the myeloma has attacked the bone. Nothing so serious that I am at risk for fractures, but enough that I have to get on some drug to stop the progression.
I prepared for this exam as if it were a real exam: I picked up copies of all tests yesterday, read them, highlighted them, wrote in the margins, went back and looked at most of my test results over the last 4 years, and wrote down 2 pages of questions. Maybe Rifkin should have been preparing for my questions! Oh, he must enjoy my examinations (pun intended).
I will only feature a few questions that might be of interest to you:
1. Are the bone lesions reversible? Yes, the revlimid can stop the progression of the disease and in time the bone can heal.
2. Are my kidney and liver funtion OK? Yes, they are within normal limits. (Kidney function is often adversely affected by myeloma).
3. When do I start and how long will the revlimid regime last? It will take about 10 days to get the order in, get me approved and have the first prescription delivered. We will probably go through 6 cycles (21 days each cycle), then we'll reevaluate.
4. Are there side effects to the revlimid? Yes, primarily causing a drop in the white and red cell counts and/or platelets. This is of concern due to my poor bone marrow, so we are starting on a lower dose than they might otherwise. Neuropathies are generally less than with thalidomide or velcade.
5. What next? If the revlimid works, then off to M.D. Anderson for the mini allo transplant from one of my brothers. I would be hospitalized for a month, then required to be in Houston for 3 months in case of complications. We would stay with Susan's brother Gary, which would be much nicer than having to rent an apartment and move a carload of furnishings.
And that, my friends, is the medical report. What a life! But I'm still laughing. It may be drug induced laughter, but that matters not--I'm still laughing, and every day continues to be a treat. Thanks again to all of you for keeping us going. We love you.
Friday, November 06, 2009
Then, when we returned from M.D. Anderson, we had our furnace inspected and were told we need a new furnace. We're waiting for a 2nd opinion before we lay out that cash.
Health Insurance scare: A few weeks ago I received a letter from Dr. Rifkin's clinic advising that negotiations between Rocky Mt. Cancer Centers and Blue Cross had broken down and RMCC physicians would no longer be a part of the Blue Cross network. The financial impact of that would be disasterous for us. Summoning my rusty lawyer skills I immediately called 3 people at Blue Cross as well as a couple of people at RMCC and gave them a piece of my mind. I then called Rifkin at night on his cell phone and offered my mediator skills to help resolve the impasse. (I love the fact that Rifkin will always take a call from me). Not that I am due any credit, but I received a letter today indicating the parties had resolved their differences and RMCC will remain in network. Had they not reached agreement, RMCC would be out of network for me and subject to a $6000 deductible, plus paying only 70%, while other centers, such as M.D. Anderson would be in network and therefore subject to a much lower deductible, after which they would pay 100%.
Who said we need health care reform? After 15 years of doing insurance litigation and after more than 4 years as a patient drawing upon health insurance, I continue to be an advocate for a single payor system. When you become seriously ill (especially when its through no fault of your own) and can't work at your previous profession, you should not have to deal with whether you will be able to get the care you need or whether you will face financial ruin trying to stay alive. Dealing with an illness is stressful enough without compounding the problem by injecting such financial uncertainties into one's life. While the polling shows that most people are satisfied with their current health insurance, I am quite confident that a vast majority of those people have not had many claims made on their insurance. Once you are forced into constant use of your health insurance you see how broken the system is. OK, I'll get off my soapbox now.
The new MRI/Sauna: I had another 1 1/2 hour MRI at M.D. Anderson. This time in a new machine. First, I've been fighting a cough for about 3 weeks and told the technician I hoped I could get through without much coughing, but I had cough drops to help. I was told to spit out the cough drops and no coughing would be allowed. Hmmm. OK, so I think, I'll keep my throat moist by swallowing. In I go. The hammering noise starts. I want to cough. I swallow. The technician yells through the microphone, "No Swallowing. Don't move." Right. Don't cough, don't swallow, don't move. I did the best I could, but was reprimanded repeatedly for swallowing. And then there was the sauna. I was warned that this machine heated up much more so than the old model. About 20 minutes into this scan a sweat breaks out on my forehead, dripping into my eyes, ears, nose, etc. I dare not move. When I come out an hour later my scrubs are soaked with sweat. I look like I've been in a sauna or just finished a rigorous workout. I walk out into the dressing area where other patients are waiting to be scanned. They look at me quizically as if to say, "what is going on in there?" Of course, most of them are not scheduled for the full body, 1 1/2 hour scan so they won't have quite the workout I did. A nurse walks by and says, "you're overcooked."
Bone Marrow Surprise: This past Wednesday I'm scheduled to see Rifkin to discuss the M.D. Anderson recommendations. When I check in they tell me I'm early for my bone marrow biopsy.
"Oh, no one contacted you? Well, have you eaten this morning?"
"Yes, I just had breakfast."
"Well, you can reschedule or you can have the biopsy done without anesthesia."
"Let's get it over with," I say and I have yet another biopsy without pain medication. I did get some ativan to help me forget the procedure. Either the ativan is working, or Rifkin is really good, as I don't remember it being too painful.
Sleeping Pills: I've finally begun weaning myself off the sleeping pills. My sleep cycle was messed up after Little Rock and then I started with the every other day steroids which led to my taking sleeping pills nightly since I returned to Denver. It was either that, or not sleeping and feeling doubly exhausted. The last few nights I've been able to sleep without the aid of Lunesta and I'm elated. Clear headedness returns!
Return of the World Traveler: Julia returned to Denver this Friday after spending the last 2 weeks in Dubaii and Pakistan, with one of her best friends. She has regaled us with stories, including a confrontation at the Lahore airport where she stood her ground while a Pakistani tried to shake her down for more money for a phone call. She also underwent quite an interrogation by customs, questioning just what she was doing in Pakistan. But what an experience she had. I told her that with these travels she is likely to be on some government list of people to watch.
NYC Fits Like a Glove: Catherine loves the Big Apple. Susan's genes are alive and well in our eldest daughter. Cate thinks there's no place better than NYC. She sounds so happy, loves the city and her job at Yahoo. Once she gets some furniture in her apartment I'm sure Susan will be paying her a visit. The question is, will Susan ever return?
The Short Term Treatment Plan: While we are waiting for all the test results the path forward seems to be pointing toward adding revlimid to the prednisone. That will be tolerable. We hope it does some damage to the myeloma cells so the mini allo transplant can go forward. If so, we're likely to have that done at M.D. Anderson in Houston. As always, we don't plan very far ahead. One step at a time, one day at a time.
Reflections: I think the best description of our state of mind would be, we're tired. The last year has been difficult to say the least. The trip to M.D. Anderson was too reminiscent of Little Rock. We feel like we have to gear up for another long siege and there are days we aren't sure we have the energy for that. Tracking the test results, the numbers, the cancer levels feels at times like a diversion from the heavier issue of dealing with an incurable cancer. In our own private thoughts I know we are probing and searching for some meaning in all this. Sometimes we talk about it but most of the time we prefer not to think about it. The "we" I speak of isn't just Susan, me, Cate and Julia, or even my brothers, sister and mom. It is all of us--yes, you included. I can sense the compassion, concern and yes, even the fear. Fear of loss. It touches me deeply. But none of us should be afraid. This experience has caused many of us to look at our lives differently, and in many cases to live with greater depth, compassion and understanding. I continue to trust and to know that things are as they are supposed to be. As many of you know I have been blessed to have a spiritual teacher whose teachings and practices have provided a vehicle for me to work toward transcending this disease. Oh, I have my days. But most of the time, with the help of my meditation practices and the support of so many people, I am filled with gratitude for being given a life filled with so much love and compassion. Thank you.
Thursday, October 29, 2009
Thursday, October 15, 2009
The idea of a mini allo transplant is disconcerting. Over the years, and with the various doctors and nurses who have treated me, we have heard all points of view. We've heard from both Rifkin and Barlogie that it is very risky and also that it can be a true cure. I guess both statements are true. It seems that Rifkin's goal is to find a treatment for me that will bring my cancer levels down and then deal with the question of whether to take the risk of a mini allo transplant. Since there is no way to prepare for making such decisions, we try to put that issue on the shelf and deal with it if and when we have to. I will say this much: Rifkin has managed to stabilize my disease so that we at least have a chance to participate in a clinical trial and bring down the disease levels. In May and June when I was getting regular transfusions and neupogyn shots I was not very optimistic. An every other day dose of prednisone has done what massive amounts of chemo could not---keep an angry disease at bay. Go figure. Rifkin was clear, however, that this won't hold forever and so now is the time to start treatment.
Final note: counts remain stable and continue to slowly go up. White count: 4.4, hematocrit 28, hemoglobin 9.6, platelets 122. No IGGs to report. The cancer center hasn't yet received its doses of H1N1 vaccine (swine flu) but because Julia is a health worker she will get her vaccination next week and can also get the vaccine for any family member in a high risk group (like me being immunosuppressed). I will be taking advantage of my connections in the health sector!
I'll check in once we return from MDA. Until then, Happy Halloween.
Monday, October 12, 2009
First, thank you once again to all who donated to Light the Night. Dan's Team will likely exceed $15,000 once all monies are collected. We had a great time at Darin and Liz Schankers before the walk as well as during the walk. My friends from the Leukemia and Lymphoma Society once again put together a great event. Thank you Joni, Amanda, Tamara, Rebecca and everyone at LLS.
Second, we are trying to keep our chins up as we absorb the Rockies loss to the Phillies in the National League Division Series. Leading 4-2 in the top of the ninth inning, the Rockies couldn't protect their league and lost 5-4. Season over. Ah, what is it those Cubs fans have said for years? Wait 'til next year.
I see Rifkin on Thursday, but don't expect there will be any news. I've spent the last week on the phone with the researchers in charge of clinical trials at MD Anderson and The Mayo Clinic. I'm currently scheduled for a workup at MDA in Houston the end of this month.
We're still working with Mayo. They are not sure I qualify for the current pomalidomide trial as they are unsure whether I ultimately failed to maintain a response to revlimid. Revlimid is a derivative of thalidomide. Pomalidomide is also a derivative of thalidomide, but with fewer side effects than revlimid or thalidomide. Anyway, 2 years ago I responded well to velcade/revlimid/dex, but Rifkin took me off it because of his concern about toxicity. The current pomalidomide trial requires participants to be refractory after treatment with revlimid, i.e., the disease starts to progress while under treatment with revlimid. Rifkin is taking a closer look at my records to see if I still might qualify. If not, there is another pomalidomide/dex trial that Mayo will be starting, perhaps in late November, that does not have this eligibility requirement. However, Rifkin seems a bit uncomfortable with my waiting that long to get treatment. Mayo suggested I could consider going on Revlimid/velcade/dex again and if I failed to respond in 30 days I would probably qualify for the current trial. If I responded, well, that would be good, too. The current trial has 20 slots open. The new trial will have 12 slots for Mayo at its 2 sites--Scottsdale and Rochester. Limited slots available, act now?
So, options appear to be 1) go back on revlimid as discussed above; 2) stay on prednisone and wait for the new trial to open; 3) follow the recommendations at MD Anderson (not yet known). By the first part of November we'll have better info. That being said, I'm sure of a couple of things. First, Rifkin wants me to get the newest treatment available and wants me to get evaluations at both MD Anderson and Mayo. He is therefore, not likely to strongly recommend trying revlimid again. That being said, however, ultimately he will tell me it is my decision. I've been here before. He'll say, here are your options, no one knows what will work, all choices are reasonable. There are many variables here. Revlimid hits the white cell, red cell and platelets hard and my counts have taken a beating. No one could guarantee they will recover. If I go straight to pomalidomide and don't respond, there aren't many choices left (I like to have a drug or 2 "on the shelf" if current treatment fails, if at all possible). If I have to be in residence for some period of time for the trial, MD Anderson would be better because Susan's brother lives in Houston. If I could qualify for the current pomalidomide trial at Mayo they would let me take the drugs here in Denver and be followed by Rifkin, with perhaps once a month visits to Scottsdale. And then there is the question of insurance. I'm not sure what my health insurance will cover. One of the uses of funds raised by Light the Night is to assist patients with funds to pay for the ancillary services necessary to participate in clinical trials. The drug manufacturer usually doesn't charge for the drugs, but there are numerous other costs, such as lab work, imaging studies, drugs to counter side effects. Health insurers often don't cover anything associated with a clinical trial because they deem it "experimental." These are but a few of the issues we are wrestling with.
So we'll just let this percolate for awhile, get more information, and trust that things will work out, as they always do.
Love to all,
Wednesday, September 30, 2009
The meeting today with Rifkin was promising in terms of the number of new drugs that are in various stages of development. Although pomalidomide and carfilzomib are furthest along, there are many others that we should see in the next 5 years or so. The research and development of these new drugs is greatly aided by the Leukemia and Lymphoma Society's financial support from its Light the Night walks around the country.
No news on the eligibility for the clinical trials yet. So Rifkin invited me to email Mayo and M.D. Anderson and see if I could get their attention. Yeh, I know how to be a pest when I want to, so I suspect within the next few weeks we'll know something definitive. In the meantime, my numbers continue to hold. In fact, the white count, hematocrit and hemoglobin, and platelets moved up a notch since last visit (still below normal, but holding). There appears to be some discrepancy between the IGGs measured here and in Little Rock (ones here are higher--hovering around 4700), but holding there. Rifkin said he has a few patients whose IGGs have held around 5000 for 15 years. I'll take that.
I still have issues with my back and my feet and will be going back to the orthopedic surgeon as it feels like something is amiss again in the lower back. In addition to being numb my feet also spontaneously cramp up, with the toes curling under and locking up. Rifkin attributes this to the prednisone and said, not much more I can do about it (I already take a vitamin B complex, vit. E, L Glutamine and magnesium for the cramping, but they don't help much). Perhaps, after all these toxins I am morphing into a hobbit. That would seem to fit with the loss of height, the expanding wasteline, etc. But all in all I'm certainly doing better than mid May when we returned to Denver. Quite honestly, I don't feel like I'm on the verge of death anymore. Rifkin has done a wonderful job of bringing me back from the abyss through his very patient, less toxic approach to my disease.
The management of the anxiety that both Susan and I felt upon our return to Denver has been quite a challenge. We continue to learn to let go of those fears. I am at a place today, thanks in large part to my meditation practices, that I would describe as almost being incapable of worry. We have been forced to face and accept the uncertainty of our future and as a result, have learned to find great joy in most days. Whatever time we have left we will live to the fullest. A good prescription even without a cancer diagnosis. We treasure our family and friendships and trust that things are as they are supposed to be. It does seem that things work out when we stop trying to control the outcomes. The worry over whether my bone marrow will recover, will I be able to get more treatment or qualify for a clinical trial, will my angry disease calm down, is enough to consume you if you allow it. Fortunately, we quickly pulled ourselves out of that muck, and Susan always gently puts on the brakes when my mind wanders there.
So, today will undoubtedly be a good day as we Light the Night. Thank you again for everything.
With much love and gratitude,
Addendum: Spoke with M.D. Anderson today and they are interested in interviewing me and considering me for one of their clinical trials. I will likely have to travel to Houston soon for the intake. Dan's Team has exceeded its fundraising goal, thanks to you. We are now over $11,000 in donations. Thank you so much.
Friday, September 25, 2009
A few logistics: The party at Darin and Liz Schanker's, sponsored by Bachus & Schanker, LLC, (www.coloradolaw.net) is a great event, with drinks, barbecue and lots of good cheer. You won't want to miss it. And they want to be sure to have enough for everyone, so if you are planning on attending the party, please RSVP now to Linda Snyder at firstname.lastname@example.org. We'll walk to the park from there for the Light the Night. The party starts at 4:30 p.m.; see website above for their address.
If you can't make the party, we will meet you at the tent with the banner: Dan's Team.
This Walk is a lot of fun, especially with a good crowd, so make time for yourself and to support this cause. See you there.
As always, we are grateful for all your love and support,
Tuesday, September 22, 2009
On that front things remain about the same. White count at 2.9; hematocrit at 28; hemoglobin at 9.9; platelets at 108 and IGGs at 3700. Rifkin has spoken with the principal investigator at the Mayo Clinic in Scottsdale, AZ about my participation in the pomalidomide and/or carfilzomib clinical trial. Portions of my records will be sent there, as well as to M.D. Anderson in Houston, to determine if I qualify. If so, we then have to investigate whether I will need to be on site for the trial, or part of it, or whether Rifkin can oversee my participation here in Denver. He thinks it unlikely I'll be able to stay in Denver. We should learn more at our next visit in 10 days. Either way, it seems to me to be an improvement over Little Rock. Susan's brother lives in Houston so that would be the preferred site for us if I have to stay for any period of time.
The prospect of spending another winter fully engaged "in treatment" is not the most appealing thought. But, I don't think this will be even comparable to the aggressive treatment I underwent in Little Rock. I've read the blog of at least one patient who has been in the pomalidomide trial at Mayo in Rochester for over a year. I think he now goes in for testing only once a month. Could I be so lucky? I know we have to do something, as my energy is waning, whether due to the cancer, the steroids, or something else, no one knows. But I do feel it's time for some action. Anyway, I guess I continue to be the guinea pig for the comparison of the two philosophies: blast it or control it. Blast it didn't work, so let's control it. Keep those new drugs coming. To support that cause go to my Light the Night site: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
As I felt my mood start to dip with the thought of another round of treatment in some foreign state (I love Colorado and hate to leave), Susan confidently told me to cheer up, we'll get through this, and she'll go with me wherever I need to go. What would I do without her?
And a brief update on the girls: Julia's paid summer internship with the Colorado Dept. of Health has turned into a full time position. She has already begun work as an Environmental Health Specialist and will be doing health inspections at restaurants, day care facilities, condemned residences, as well as other public health duties. She is quite excited. Although Julia was ready to move into her own apartment if she got this job, given the probability that Susan and I will be taking up residence in either Houston or Scottsdale, she has delayed those plans. I guess it's OK to live in the parents' house so long as the parents aren't there. Catherine began work for Yahoo! this week and has also managed to find a studio apartment in NYC (probably the size of a closet!). She says she loves the city and is also very excited about her new job. Susan is already plotting when she can go visit.
and that's about all for now. I'll report once we see Rifkin in 10 days and we know whether we're going back on the road.
Love to all,
Wednesday, September 09, 2009
My approach to the "your disease is quite angry" has been to seek relaxation with the notion that perhaps I can calm this down from the inside out, since the chemo attack from the outside doesn't seem to have worked. In that vein, I have increased my daily meditation to the point that Susan sometimes wonders if I'm ever coming up out of the basement. She and I also went on a little retreat, renting a cabin in the woods at a meditation/yoga retreat center. Those few days allowed us to forget this cloud hanging over us, at least for a little while. And, Rifkin gave me the green light to accept an invitation from our friends, the Dowells, to join them for a week's respite in Florida. Rifkin was a bit nervous about my getting on an airplane with all this H1N1 flu stuff in the news, but thinks its early enough in the flu season that I'll be OK. To be safe, he prescribed some Tamiflu for the trip. We'll keep our fingers crossed, as last Feb., even though I was on Tamiflu, I ended up in the hospital for 8 days with the flu. Other precautions: I am to stay out of the sun, so I'll either be sitting on the balcony watching the surf or fully clothed with my UV rated long sleeve shirt and pants under the umbrella. Not quite the beach vacation I was dreaming of, but it will provide a break and a chance to get away from "it". We are, of course, very appreciative of the Dowells for their generosity. Susan is especially excited to go since she craves any semblance of normal life. The twice weekly trips to the cancer center and the chronic watching (of me) and the waiting to hear numbers takes it toll. I know she would love to return to our past life, intense,but a life not fraught with the fears and physical limitations of this disease. There is no normalcy in our lives, but we can pretend for a week here or there. Those times become such gifts as they only come during the recovery periods between chemo treatments. Once I start another chemo regime, relaxation becomes very elusive.
Catherine left today for a new job in New York City. She will be working for Yahoo! as an optimization consultant for their on line marketing division. And no, I don't know what that means, but it sounds exciting, right? Anyway, she is quite excited about the job, even though NYC can be a bit intimidating. Susan's cousin, Arlene (who is an avid reader of this blog) and her husband, Jim, picked Cate up at JFK airport today and she will be staying with them for a few days, just north of NYC, while she goes into the city during the day looking for an apartment. It sounds like quite an adventure and we are very proud of her for landing this job and orchestrating a move to NYC (and yes, we have stacks of boxes of her "stuff" in our garage). Of course Susan is thrilled at the prospect of having an apartment available in NYC, having lived in the city for 15 years before I dragged her out to Colorado. I suspect Susan will be spending a lot more time there. We will likely soon be empty nesters, as Julia is hoping to land a full time job with the Colorado Dept. of Health, and if she succeeds, she wants to move into her own apartment. Can we handle the quiet?
The Leukemia and Lymphoma Society's annual Light the Night Walk will be taking place in Denver on October 1. Donations can be made on line at: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN
I am reluctant to do any active fund raising this year in light of the tremendous support we've received from so many people this year. So, no push this year. If you want to contribute, this link should get you there.
Best to all,
Tuesday, August 25, 2009
We had a rather sobering conversation about his view that I likely have suffered permanent injury to my bone marrow from the Arkansas chemo regimes and that injury has limited my treatment options. I've discussed this "bet the company" approach in previous posts so I won't repeat it here. On the drive home I felt forced to review with Susan one more time our discussion with Dr. B regarding whether the "super beam plus" chemo would limit my future treatment and she, like me, remembers him being very clear that I would not have any future limitations, other than I could not ever again receive the "super beam" treatment. It's difficult not to get angry about this situation, but I know it is not healthy to go to that place in my mind, so I'm getting pretty good at staying away from it, until it comes up in my treatment discussions with Rifkin. Please understand that Rifkin does not volunteer his views, but offers them only after much pushing, prodding and questioning by me. I'm always trying to find out what new drugs are on the horizon and might be available to me, and I keep running into these barriers created by the Arkansas experience, like your bone marrow can't withstand that kind of treatment. The picture has changed signficantly since the "super beam", and needless to say that becomes very frustrating. Catherine went ballistic last night when she learned the extent of the problem and the limits to what can be done for me now.
That being said, let me say that I continue to be the optimist. I certainly feel better than I did 4 months ago, although I feel like I've reached a plateau of sorts, i.e., I'm not getting any worse, but my efforts at restoring my strength and muscle only seem to keep me treading water. I think this is due to the muscle wasting feature of the steroids. At some point we'll have to start trying to reduce the cancer levels. When that decision is made there are 2 potential drugs that aren't myelosuppressive--thalidomide and HSP-90. Thalidomide is available, HSP-90 is not currently available. HSP-90 is a better drug since it has very few, if any, side effects, but apparently the manufacturer didn't make enough of it to produce more after the completion of the clinical trials.
A few weeks ago I completed my "service" as president of the Colorado Trial Lawyers Ass'n and am now officially a past president. Although I tried to resign 3 times over the past 5 years (all of which were rejected by my fellow officers), and I only served as president for a couple of meetings, the association was extremely generous in thanking me for my service and bestowed its thanks to me in the form of a new, lighter bike. I am completely undeserving of such thanks, but am so proud to have been able to serve as president, even if for only a short amount of time. Our many trial lawyer friends have been so generous and supportive. I do wish the American public would hear more of these kinds of stories, showing what big hearts trial lawyers have, instead of the lawyer bashing that seems so popular these days. This comment is certainly not intended to diminish all the support we have received from our family and nonlawyer friends. My point is only that as a group, the trial lawyers have come forth to assist one of their own, even though, for many of them, I may have been more of a professional acquaintenance than a close friend. Of course, now they are all my close friends.
The best news of the week? Rifkin gave me a 2 week break from my clinic visits. No sticks, pokes, or blood draws!
With much gratitude and love,
Monday, August 17, 2009
Blood work today continues in the stable range. White count up to 4.9, red cells holding and platelets at 109. Slowly we move, but in the right direction. I continue to have to take exjade to draw the iron out of my liver but that is giving my GI tract fits, especially when I have to take it with potassium, which I've had to do for the last week. Suffice to say I can't stray very far from the house.
We talked with Rifkin today about the two drugs recommended by Barlogie: carfilzomib and pomalidomide. Both are in phase II clinical trials. Therefore, I have to qualify for the trial protocol. Rifkin doesn't think I can qualify for the carfilzomib trial. He sent some emails to friends of his at Mayo (in Scottsdale, AZ) and MD Anderson (in Houston) to see if I could get into the clinical trials they are running with pomalidomide. He's also meeting with the manufacturer's (Celegene) regional rep this week to discuss what trials I might qualify for. Anyway, I'm still not ready to enroll as my bone marrow is not yet fully recovered. I asked Rifkin if I am accepted into a trial does that mean I have to take up residence there. He said I'd probably have to go there, but not take up residence. He might even be able to get me permission to join the trial and be supervised by him here in Denver. Who would have predicted that my myeloma would bring with it a tour of the country? I think Susan and I should buy a big old school bus, paint it in psychedelic day glow paint and hit the road, stopping at all the medical centers in the country. Remember the Merry Pranksters? Wavy Gravy? The only difference is that my drugs are legal!! Oh, what a strange trip it's been. If you don't know what I'm talking about, you're just too damn young.
In the meantime life continues at its slow pace. My fatigue seems to be increasing and I'm back to 2 hour naps every day. I've been so tired lately that I was sure I would need a transfusion today, but red count has held. Then I remembered that following the first transplant I was exhausted for almost a year, and I didn't have nearly as much chemo as I did this time. The fatigue comes in waves, so I guess I'll just keep riding it.
That's all for now. This blog continues to get 50 to 70 visitors a day. Thank you every one of you for your support. We are very grateful.
Friday, August 14, 2009
Rifkin is looking for clinical trials to enroll me in for pomalidomide. Based on my research there are trials still recruiting participants, provided I met the eligibility requirements. He thinks it will be easier to get in a pomalidomide trial as opposed to carfilzomib. Still an issue around how hard the drug will be on my white/red counts and platelets. He continues to be very concerned re allowing the bone marrow to recover. Stability in the IGGs also continues. New numbers are 3430, down from 3500, down from 4500 about 3 or 4 weeks ago.
After living in Denver for 30 years, I finally got my first juror summons. Now, there was a time I would do just about anything to be able to sit on a jury. Talked about it with Dr. Rifkin and he said, no go. Too many issues regarding my abillity sit for more than a couple of hours due to my back issues, the need to check my blood chemistry every Monday, and the possibility of transfusions, or testing during the week. I used to pick juries and now I can't even sit on one! How low can one go? Oh well, the odds of my staying on a jury would be quite low anyway.
Susan and I celebrate our 27th anniversary tomorrow. Anyone who reads this blog knows my feelings for her and my deep appreciation for how she has cared for me during the last 4 years. She is special and we work so well together. She rants about this and that (she is a New Yorker after all) and I laugh. Whatever works, right?
I think one or more of my drugs must be kicking in. Maybe I'll get some sleep tonight. Later.
Monday, August 10, 2009
As of the meeting today with Rifkin we had not heard from Barlogie, but Rifkin finally emailed him during my visit today and Dr. B replied instantly. He suggested Rifkin look at putting me on one of two new drugs: carfilzomib or pomalidomide. (Does this mean he's no longer trying to blast the MM out of me? Can you hear my sigh of relief?) I know about both of these drugs and have been following their development and clinical trials for a couple of years. Carfilzomib is a proteanase inhibitor, like velcade. Pomalidomide is a derivative of thalidomide. I don't think they are FDA approved yet, only in clinical trials, so I'm wondering how I'll get them or whether I need to enroll in the trials. As I started obsessing on this Susan told me to calm down as she is confident with Barlogie and Rifkin as my docs, they'll find a way to get me the drugs I need. Results from the trials are encouraging, especially carfilzomib for people like me who have had a lot of treatment. Both seem to have some depressive effect on the white and red cell counts so I'm wondering what that means in light of my poorly functioning bone marrow. Until Rifkin determines which way to go I'll stay on the steroids I guess. I feel worn out with them, primarily with this every other day stuff. I was up until 3 a.m. last night. But the blood counts seem to have stabilized and I'll have to admit that a few months ago I wasn't so sure where this was going. (Not that I have any idea now). We're not out of the woods, but we've managed to stay in this holding pattern. In addition to the same old fatigue/neuropathy/back issues, I'm now taking a drug specifically to reduce iron from too many transfusions (X-Jade). This wreaks havoc with my GI tract, as is typical with most drugs I take, it seems.
I invite you medically knowledgeable bloggers to tell me what you know about carfilzomib or pomalidomide. Best to you all. Have a good week.
Monday, August 03, 2009
So far no contact from my doctor in Little Rock, despite numerous requests for a phone consult with Rifkin. Go figure. I'll withhold further comment for now.
Have a good week everyone. We're still tickin' along, one foot in front of the other, one day at a time.
Thursday, July 30, 2009
Monday, July 20, 2009
And herein lies the great divide between the Arkansas treatment plan and that used by Rifkin, Mayo, and a number of other cancer centers. Blast it out of existence vs. manage it with a combination of drugs. Each has its risks. Neither is a "cure". Being in remission does not equal being cured. Managing the disease is not remission. No one has the answer. As you all know the "blast it out of existence" approach didn't work for me. Instead I now bear the scars of that unsuccessful approach, which is marginally functional bone marrow, completely numb feet, and skin that flakes off like dandruff. And those scars (primarily the injured bone marrow) now impede my ability to withstand even the mildest of treatments. I am not one to look back and live with regrets. I made my decision with as much info as I could ingest. I know that had I stayed in Denver for treatment that course may not have been successful either, and I might now be shuffling off to Little Rock for treatment. That being said, I must admit I am extremely frustrated that my Arkansas treatment regime has left me in a state where I can currently receive minimal treatment for a disease that is "angry", as both my doctors say. As a former trial lawyer, it feels like I've just gone through a "bet the company" piece of litigation, and haven't fared very well. I always counseled my clients against taking things to the brink--too risky and they needed to be able to afford losing it all. And I must say that I never appreciated that the super beam plus chemo along with the transplant was an "all-in" bet, that might leave me with no more chips to bet. I even specifically asked whether the super beam plus chemo would prevent me receiving a transplant in the future (whether from my own cells or my brothers'). The answer: absolutely not! hmmmmm. So, you ask, what's my point, other than venting? I'm not sure, except to say, sometimes learning the lesson, once again, that we can't see into the future can be very frustrating and difficult.
So, on to the current numbers and the plan. Plasma cells (which are the cancerous ones generated by myeloma) are at 75%. They were 50% when we left Arkansas. They were at 90% or higher before the transplant. The disease is still "angry" according to Rifkin. More info on things such as "flow", that I don't really understand, will be available next week. The plan? Rifkin told me there were 2 courses of action: blast it or go at it with more finesse. Blasting it, per Rifkin, would likely leave me with bone marrow that will never recover. He didn't recommend that course but said that is undoubtedly what would happen if I were in Arkansas. (My marrow is slowly recovering. This is the first time since I returned to Denver that I have not needed a blood transfusion within 2 weeks of my last one. The white count is now 2.0, having received a neupogyn shot last Monday. Slow progress---but progress) Back to Rifkin: I didn't even consider the "blast" given the difficulties I have had since receiving the high dose chemo in early April. He says he does not want to give me any mylosuppresants, i.e., drugs that might potentially suppress the myeloma, as those drugs would also adversely affect my white and red cell counts. So I'm starting a regime of prednisone, 50 mg., every other day. Roid rage anyone? If this holds the myeloma or brings the numbers down, then he will introduce another drug (perhaps thalidomide). If that works to some degree, and my white/red counts are stable, then perhaps another drug, and so on.
The watchword is patience. Whether it takes 6 months, a year, or two years, I am confident the cancer will begin to lose its anger (no one or no thing can stay mad forever--it is a law of nature), the counts will stabilize and new treatments will begin to surface. Susan and I have been through this before. We have tapped our inner resources like never before. We know that is the source of the strength to weather this storm. Susan has been the most unbelievable pillar of support for me and she continues to show that behind those tears that constantly flow is a block of granite so solid that no storm could crack it. Similarly, Catherine and Julia are worried but steadfast in their resolve to help us through this. Catherine told me she is very frustrated with that cancer and is going to have to have a stern talk with it. Go get 'em Cate!
As we walked out of the cancer center I looked at Suz and she at me. We could see the love we have for one another in each other's eyes. We're more in love than ever. Funny how life's most difficult moments also bring blessings. And though we have to walk this difficult path, it is a long road but we're gonna make it.
Much love to all of you.
Wednesday, July 15, 2009
Otherwise not much has changed in my blood work. I can't seem to generate either white cells or red cells on a consistent basis. I'm hoping the bone marrow biopsy will shed some light on the cause of this problem, but I'm not sure it will. It may just be a matter of time.
Otherwise things are pretty slow around here. I spend too much time at doctor's offices. I am noticing a return of some energy which is encouraging. You all know the drill: slam me to the floor with chemo, watch me struggle to get upright, regain some weight and muscle and start feeling better, then slam me with more chemo. I certainly prefer to be in the strength gathering and weight gaining phase, which is where I am now. I try not to think about what's coming. One can actually paste together a life while riding this roller coaster, albeit not too active, but nonetheless a life, as long as one keeps his eyes looking upward. Speaking of which, I must emphasize again how much I am enjoying being back in Colorado. The summer weather here is so temperate and beautiful. And the skies are always a deep blue with a few scattered clouds (except for the afternoon shower). Every day I am thankful to be back home. Why, I hardly think about Arkansas anymore (and that's a very good thing).
My best to all.
Tuesday, July 07, 2009
I started some acupuncture about 3 weeks ago to try to get some relief for my peripheral neuropathies in my feet--shooting pains and numbness. Not much success on that front. I saw a Chinese herbalist this morning for my thrush. He seems to have the greatest knowledge of where my imbalances lie and what I can do diet wise to try to restore balance. I had a very interesting discussion with him about my body's energy, the imbalances that are making it difficult for the bone marrow to recover and what can be done about it. This is also at the core of the thrush or coating on my tongue. As he said, it is but a symptom of the imbalance in the body. Now, I have been taking some concentrated vegetable soup from a Dr. in the UK, upon recommendation of a close friend who has had some success with this guy's product. He requires, as part of his regime, that I abstain from eating any meat or fish.
The Chinese doctor, on the other hand, counseled against a strict vegetarian diet because of my low red cell count. He said the best source of nutrients to aid in the production of red cells is red meat. Makes sense right? He provided a number of dietary recommendations along with some herbal tea to address the imbalances. He also counseled against acupuncture at this time because of my low white cell count--don't want to risk an infection. I had actually been reading about that risk, along with some other literature that said acupuncture may not be beneficial if you have a low white count. Rifkin knows of my trying acupuncture but had no opinions. Trying to exercise some control requires the balancing of conflicting opinions. And maybe it is all for naught. But I have to feel like I am trying to help myself so I proceed and try to do what makes most sense. Could it be that no one knows? It often seems that east and west will never meet and they go their very separate and disparate ways in efforts to treat disease. And the patient is caught in the middle.
And with that I will close. I am always thankful for everyone's support and continue to see this as a journey, no matter how difficult it may seem at any one point.
With much love and continued hope,
Monday, June 29, 2009
So where do we go from here? Rifkin said that data just came in showing a combination of thalidomide, at low dose (50 mg every other day) and predisone (also 50 mg every other day) works very well for maintenace therapy. We will be starting this in the new future. Thalidomide is a good drug for now because it doesn't affect the blood counts. Thalidomide and dexamethasone (steroid) were my first line of therapy more than 4 years ago and I responded very well, although the dosage was 200 mg, not 50. But Rifkin says 200 mg isn't used any more because of the side effects. Anyway, more treatment is around the corner. Let's all cross our fingers in a collective prayer/wish for this regime to rein in these IGGs and bring these cancer levels down.
For those of you who don't care to follow these numbers, here is my narrative: I feel a lot better than when I first returned home, although my energy still fluctuates quite a bit, and most evenings I'm pretty wiped out. I rode my bike about 8 to 10 miles on Saturday and I think I'm still recovering! In February John Sadwith called me in Little Rock and asked if I would be home by June 21, as he wanted to get us tickets to see Eric Clapton and Steve Windwood. Well, Susan, the girls and I joined John and other friends of his in a suite at the Pepsi Center for some rockin and rollin on June 21. It certainly reminded me of some good times in my wasted youth!
I'm trying acupuncture for my neuropathies but so far no response (only 2 treatments), and I still have thrush so I'm going to turn to the Chinese herbalist recommended by a friend. I've been on gentian violet for the thrush (made from the blossom of the gentian plant)--a home remedy recommended by someone. It took care of most of the thrush but can't seem to eradicate it.
Despite it all Susan and the girls remain in good spirits and won't let me engage in any self pity. I can't say things are back to normal, but life does go on. Our best to all. Have a Happy 4th of July.
Addendum: Since this posting, new IGGs are at 3720, down 650 from 5 days ago. All this bouncing around only means, at best, my cancer levels are relatively stable.
Monday, June 15, 2009
This is tricky stuff. I tried to get some answers today from Rifkin about what the next course might be, but he was noncommital--depends on too many variables. But I did learn this much: He is hoping that a new drug HSP-90 gets approved soon as he thinks its clinical trials showed very good responses. The trials are closed but he doesn't know where this drug in the approval process. He also said he cannot hit me with too harsh a chemo as he fears my bone marrow would never recover. Another transplant is likely in the works (mini allo, i.e., from one of my brothers), but it's too soon to know when that might occur. I need more time to recover and as long as my cancer levels aren't too worrisome, he will continue to keep me off the chemo drugs and steroids.
The body rash is gone and the thrush has diminished but it is a bear to get rid of. The most effective treatment (after more than $100 for 3 different medications) is papaya lozenges, which were suggested by my dermatologist. I'm still looking for the treatment to drive this stuff out of my mouth so I can taste food again.
So I try to go on with a life. I have more energy than a month ago, am going to physical therapy and riding my bike quite regularly; not far but it at least gets the parts moving. (that's my "parts", not the bike's!), and I try not to think about what lies ahead. A mental challenge to say the least. I continue to be very glad to be home. Seeing friends and just getting out to some familiar haunts occasionally is good for my soul. I continue to believe we will navigate these waters as well, especially with all of your help.
I continue to be very grateful for everything we have received these past 4 1/2 years. The blessings have been bountiful.
Love to all,
Sunday, June 07, 2009
And now the "numbers" report. Myeloma markers (IGGs) jumped from 3800 to 4200 early last week, which caused me much concern, given that my white and red cell counts, as well as my platelets have not yet returned to normal or stabilized. Dr. Rifkin was about to start me on some steroids to try to contain the upward movement of the myeloma, but decided to wait to give me a few more days to continue to "heal", as he put it. Then I get new myeloma numbers: IGGs drop to 3660. Go figure. No treatment and numbers are going down--contrary to the trend over the past month? I didn't believe it, and emailed Arkansas and requested that they ask the lab to verify that number. Six hours later I'm told the lab says the IGG number is correct. I don't know whether we are on a downward trend or just bouncing around, as can happen. The next week or so will tell the tale I guess.
I should note that 2 days before the blood was drawn which resulted in the lower IGG number I started drinking a concentrated vegetable potion that a close friend sent to me. She has been trying to get me to take this for a couple of years, but I have resisted primarily because I didn't know whether it would interfere with the chemo I was taking. Now that I'm chemo free I thought I would give it a try. I would be surprised if some change in IGGs could result from just 2 days of ingesting this new potion. I will, nevertheless, continue to take it as long as I am not on any chemo.
The adjustment to being back home has not been as easy as I expected, but is getting better. The first couple of weeks we were so wiped out we could hardly do much. Then we got the news that my blood counts were not recovering. Then we got hit with a major flood in Julia's room (in the basement) from a heavy spring rain--the third year in a row, despite having hired people each to fix the problem. New contractor has now deposited big piles of dirt on our front lawn as he digs around the foundation to locate the problem. Meanwhile Julia is displaced from her room once again. But, after a month we are returning to some semblance of a life. Susan is pulling out the depression that we both suffered as a result of the lengthy stay in Little Rock with little progress in terms of eradicating this myeloma. I've got more energy and hope that my blood counts stabilize in the next couple of weeks so we can develop strategy for getting back at this myeloma. In the meantime I have tried to get more involved in the trial lawyer's work as I am still the president, even though I've not done much for the association in the past 6 months. In addition, I continue to do what I can to regain my strength. I desperately would love to return to my swimming but I'm sure I won't be allowed in the pool until the white cells have been normal for a few weeks or more.
So that's the scoop for now. Hope you are all enjoying the beginning of summer as much as I am.
Saturday, May 30, 2009
The initial plan was to go to Arkansas for a double auto (my own cells) transplant. My cancer took this opportunity to get very aggressive and the initial plan had to be scuttled for much more aggressive treatment, concluding with the heaviest chemo regime one can get for this disease (the super beam plus--9 chemos in high dose). That was only marginally successful and the IGGs are now on the rise again. Because the super beam can only be given to a patient once in his lifetime, due to the risk of pulmonary disease, another auto transplant is not viable at this time. The only other type of transplant is a mini allo (using one of brother's stem cells). I am very fortunate that I have brothers that match the 10 important antigens. But there are increased risks with this type of transplant because you are being given someone else's stem cells--not unlike any other organ transplant. In addition, for this type of transplant to be effective, my cancer levels must be considerably lower than they are now. That will have to be accomplished through some drug regime. Since I have had most of the potentially effective chemo drugs, finding a new effective drug is the first major challenge.
In this regard I do not perceive much difference between Barlogie or Rifkin as the treating doctor. While they both know what drugs are currently available as well as clinical trials that are being conducted, unfortunately neither knows for sure whether any of those drugs will work on me. Hit or miss/trial and error? Call it what you will, I'll continue to be the guinea pig. In addition, Barlogie isn't very fond of mini allo transplants and one time told me "We don't do those." In fact, they do, but not frequently. On the other hand, Rifkin has just completed a clinical trial of mini allo transplants, the results of which are not yet published, but the inside word being that all patients are doing well at two years post transplant. So, this guinea pig thinks he will do best in his own home environment, with his family and friends around, and the chance to be living some semblance of life while going through this next phase of treatment. In that regard, I've already attended my first CTLA officer meeting, and am considering whether I can conduct a few half day mediations starting in late June or July. Life must go on.
A long winded way of saying there is no giving up in me. I still have too much to do. And with that, I think I'll take a spin on my bike.
Friday, May 22, 2009
The news on the effectiveness of the chemo and transplant is not great. Even though the cancerous levels of plasma cells was cut by 50 %, my IGGs and M protein are now trending upward, rather than downward. (IGGs at 3670 and M protein at 3.0). So were do we go from here?
We've had a couple of meetings with Dr. Rifkin and he advises that no further treatment can be given until my blood counts recover. Plus, I now have thrush and this full body rash, although both are improving, albeit slowly. I agree with the advice of no treatment at this time as I am just too worn out to handle any treatment at this time. So, the planned return to Little Rock on June 3rd is not going to happen. Susan and Julia will be flying back to Little Rock next week to pack up and drive the car back.
I have told Rifkin I want to continue with further treatment here in Denver, rather than Little Rock. My myeloma has become very drug resistant. I have received almost every drug available over the past 4 months and we've made some but not great progress. Because my cancer levels are still fairly high, another transplant is not an option. Only when the cancer levels are reduced can we explore another transplant--and that will probably involve use of one of my brother's stem cells (called a mini allo transplant). I have asked Rifkin to collaborate with Barlogie and discuss what drugs, if any, might work to bring down my myeloma levels and to come up with a plan. Rifkin's approach is one step at a time: first, get my blood counts stable; next perhaps give me steroids every other day to try to hold the IGGs stable; third, come up with a treatment plan to bring down the cancer levels (this is the challenging part given the few drugs, if any, that might work that I haven't already had and thus developed resistance to.)
These are tough times, but as Rifkin said to me earlier this week, "you're a tough guy". So we proceed, one step at a time. And it will be so much better to be going through this while at home. We have navigated rough waters before and I am confident we can do it again. We are also mindful of the fact that we couldn't have done it without all of your support, for which we are very grateful.
Much love to all of you,
Saturday, May 16, 2009
Julia graduates from Colorado College on Monday. She'll be getting a degree in public health. She's had a great experience at CC and I know she will miss it. She will be working as an intern at the Colorado Dept. of Health for the summer (paid internship), so she's already gaining experience in her field. I guess she's now on her way. To where, we don't know.
Even though I don't get out much due to the low white count and fatigue, it still feels so good to be home. Thank you everyone for all you did for us and continue to do for us.
Friday, May 08, 2009
So now what? I'm exhausted and have about 2 to 3 hours of energy to engage in conversation or low key activity, then I seem to start fading. I've lost 40 pounds, mostly muscle (yes I had some) and so I'm plotting how to gain some strength. Right now walking twice a day plus multiple trips up the 4 flights of stairs in our house are my exercise regime.
We have to visit the clinic twice a week to have my blood tested and sent to Little Rock. They will be monitoring my cancer levels. We could be home for as long as a month provided my "numbers" don't start running amuck. Then back to Little Rock for testing and another chemo regime, which hasn't been defined for us yet.
I never expected that I would miss my home and seeing friends as much as I did in Arkansas. Four months of daily trips to the clinic and feeling like my whole world was "treatment" was mind numbing. We felt like we had been yanked out of our lives and plunked in some alternate universe. It is so refreshing just to be back, if nothing else, in proximity of the lives we had been living. I do hope that further treatment can be administered in Denver so we don't have that added burden of being so removed from our very large support group.
So, for now, we are enjoying being home and seeing friends.
Thursday, April 30, 2009
Frankly I wasn't expecting to be "released" so soon. But my white count jumped in the last 2 days--we're now over 2! And other blood counts should start to stabilize. I'll be monitored at the clinic at home, with twice weekly shipments of blood to Arkansas for evaluation. I haven't fully processed what returning to life in Denver and still being tethered to Little Rock is going to be like. We will sort those things out as we move forward. I have many thoughts racing through my head at this hour but am mostly reminded that when first diagnosed I was told this was incurable but treatable. This latest treatment has taught us much, humbled us more, and made us more grateful for all of you for the never ending support during these past months. Do not underestimate how much your contact helped. I could not tell you how many times Susan and I said to one another, "what would we do without our family and friends."
Sunday, April 26, 2009
We're still watching the white cells, which are moving upward, but quite slowly. But eventually they will get to normal levels. They are the barometer of the transplanted stem cells engrafting into the bone marrow. I'm recovering slower than expected but the counts continue to move upward so we're told to just be patient. Otherwise the days are quite boring. We typically spend 3 to 4 hours at the clinic where I get infusions of antibiotics, platelets, etc. We're usually sent home with some bottles of potassium that Susan has to change every 5hours. And so it goes.
Julia will be joining us tomorrow for another 5 days, which will be a nice respite for Susan. And as for Susan, I told her today that she is amazing. She is full of energy, always in a good mood and cheers me up every day. Of course, she has made many new friends. The story I like most is the guy who tried to pick her up at church---no kidding. He sat very close to her, tightly held her hand during the Our Father, and then, (in Spanish) asked her to put her phone number in his cell phone. Gotta watch out for these Arkansasans.
Here's to spring bringing us new life.