Saw Rifkin on Monday and reviewed blood work, blood counts, kidney and liver function, and myeloma markers. Counts are holding although drifting downward a bit. He thinks/hopes I'm ready to start my full scale recovery from the double dose cytoxin and the counts should start to hold or go up. Kidney and liver are working fine. Myeloma markers have drifted up, but at a much slower pace than previously. Again his hope that the cytoxin has slowed the myeloma and that it will stabilize, if not go down, with the prednisone therapy I'm on. Better report than 6 weeks ago but still not out of the woods. New bone marrow is not scheduled. We're waiting for the paperwork for the new drug, carfilzomib, to be processed so I can start on that. Maybe in 30 to 45 days. Rifkin has started to loosen up on the socializing restraints he's placed on me. Now, it's as much about my energy as avoiding exposure to large crowds. I did manage to go to my first Rockies game, hoping to end their losing streak. No such luck.
Please have a relaxing Memorial Day.
Love,
Dan
Thursday, May 26, 2011
Sunday, May 15, 2011
The Truth Be Told
I guess it's time to come clean and provide a bit more detail about the latest bone marrow tests and chemo. A couple of minor things first. I'm doing OK now. Still have an uphill fight, but still fighting. Second, a couple of comments disappeared from my last posting. To the bloggers who put those comments there, please understand I didn't erase them. I have no idea what happened but one day they weren't there. Cyber ghosts.
Now for my coming clean. My last bone marrow biopsy was March 31. Next one will probably be in a couple of weeks. The last one was more troubling than any previous ones. Per Rifkin, my disease is raging mad, worse than its ever been. I did not expect the news would be good, but it was worse than I could have imagined. Below are a few of the findings from the bone marrow report.
--Plasma cells 93% (normal is 5% or less). These are the cancerous cells. Many atypical forms present. My plasma cells were at 90% a couple of times previously. Before the transplant in Little Rock and before the transplant in Houston.
--Some background: Healthy people have 46 chromosomes (for males that consists of 22 pairs and an x and a y chromosome). When I first went to Arkansas I had 46 normal chromosomes, which was an improvement from when I was first diagnosed where I had a couple of chromosomal abnormalities. The improvement was thought to be the result of the velcade treatment.
--I now have 52 chromosomes; the extras being clones. Now that's a scarey thought. Me cloning myself. So I said to myself, "self, what's with these extra chromosomes...?" Now seriously, having more chromosomes than 46 is better than having less. I haven't figured out why, but then more is usually better than less in most things in life. These multiple chromosomal abnormalities often appear in the more advanced later stages of myeloma. Not good.
--My M spike (the level of M protein) in my blood is 2.8 (normal being 0). It has been much worse (4.4), but Rifkin attributes the lower level to the myeloma not being as productive in producing M protein, which only means the M spike and IGGs aren't going to be that good in projecting the stage of my disease.
--M spike has now appeared in the urine. Not good. This hasn't been found before and is another sign of the advanced stage of the disease.
Rifkin spoke with a number of his colleagues around the country, including my doc at MDAnderson and the consensus seemed to be the high dose cytoxin--maximum 2 treatments. Because of my languishing white count I was hospitalized for both of the cytoxin treatments. I handled those quite well, as I have most of my high dose chemo. That being said, I'm not optimistic about the cytoxin bringing the myeloma down to any significant degree. This is an alkaline based drug, as have been all of my high dose chemo treatments (5 thus far, including the 3 that preceded each of the 3 transplants). My body has not responded to any of these treatments. Despite my repeated objection to such treatments, following the failure of my first transplant, each doctor has had an explanation why this time it would work. Wrong. My doc at MDA told me candidly they have no other drugs that will wipe out the cells as effectively and let the body start over--even if the drugs don't wipe out the cancer cells. So they filled me with cytoxin. Bone marrow in 2 weeks or so will tell the tale.
Now, with all that I'm not hang dogging it. It has been difficult for my family, mother, brothers, sister, brother in law and those close friends who know the full story. But you know me, ever the optimist, the problem solver, the enjoy each day kind of guy. So, while we're preparing for the worst I'm working on solving this problem myself. I'll do most of what my doctor says, but being a problem solver, I've decided I need to figure this out for me. So I've delved into the details, so to speak. You naturopaths will appreciate this and any suggestions you have will be appreciated.
I am on a daily routine of carrot, beet and apple juice. Curcumin. Triple Omega (flaxseed, omega 3,6,and 9, and olive oil). Pro biotics. Vitamin D, B-6, and B-12. Some of these I've been on for awhile. I have always had good results with steroids and am on 50 mg every other day. The steroids boost the chemo and I figure they could boost the effects of these natural vitamins, antioxidants and the like. Curcumin has been discussed in a number of myeloma blogs over the years and more recently has shown not only an ability to increase the effects of antibiotics, but also the death of cancer cells.
And now let's wind up this long post. I understand a few things. First, we never know what is going to happen. The doctors don't know. I don't know. No one knows. So there is no need to fast forward to an unknown outcome. Things will happen as they are supposed to. I firmly believe at any moment in life everything is as it should be. If it doesn't feel right it is only because of my perceptual limitations. I am at peace with whatever happens. Second, having recovered from the high dose chemo, I don't feel much different than before we got the news from Rifkin. My main problem is fatigue. I'm waiting for the weather to settle in to nice spring/summer weather so I can ride my bike, take walks, go on picnics with Susan, and continue to enjoy life. And finally, I don't have the words to express the depth of the gratitude I feel for each and every one of you in my life. I love you.
Dan
Now for my coming clean. My last bone marrow biopsy was March 31. Next one will probably be in a couple of weeks. The last one was more troubling than any previous ones. Per Rifkin, my disease is raging mad, worse than its ever been. I did not expect the news would be good, but it was worse than I could have imagined. Below are a few of the findings from the bone marrow report.
--Plasma cells 93% (normal is 5% or less). These are the cancerous cells. Many atypical forms present. My plasma cells were at 90% a couple of times previously. Before the transplant in Little Rock and before the transplant in Houston.
--Some background: Healthy people have 46 chromosomes (for males that consists of 22 pairs and an x and a y chromosome). When I first went to Arkansas I had 46 normal chromosomes, which was an improvement from when I was first diagnosed where I had a couple of chromosomal abnormalities. The improvement was thought to be the result of the velcade treatment.
--I now have 52 chromosomes; the extras being clones. Now that's a scarey thought. Me cloning myself. So I said to myself, "self, what's with these extra chromosomes...?" Now seriously, having more chromosomes than 46 is better than having less. I haven't figured out why, but then more is usually better than less in most things in life. These multiple chromosomal abnormalities often appear in the more advanced later stages of myeloma. Not good.
--My M spike (the level of M protein) in my blood is 2.8 (normal being 0). It has been much worse (4.4), but Rifkin attributes the lower level to the myeloma not being as productive in producing M protein, which only means the M spike and IGGs aren't going to be that good in projecting the stage of my disease.
--M spike has now appeared in the urine. Not good. This hasn't been found before and is another sign of the advanced stage of the disease.
Rifkin spoke with a number of his colleagues around the country, including my doc at MDAnderson and the consensus seemed to be the high dose cytoxin--maximum 2 treatments. Because of my languishing white count I was hospitalized for both of the cytoxin treatments. I handled those quite well, as I have most of my high dose chemo. That being said, I'm not optimistic about the cytoxin bringing the myeloma down to any significant degree. This is an alkaline based drug, as have been all of my high dose chemo treatments (5 thus far, including the 3 that preceded each of the 3 transplants). My body has not responded to any of these treatments. Despite my repeated objection to such treatments, following the failure of my first transplant, each doctor has had an explanation why this time it would work. Wrong. My doc at MDA told me candidly they have no other drugs that will wipe out the cells as effectively and let the body start over--even if the drugs don't wipe out the cancer cells. So they filled me with cytoxin. Bone marrow in 2 weeks or so will tell the tale.
Now, with all that I'm not hang dogging it. It has been difficult for my family, mother, brothers, sister, brother in law and those close friends who know the full story. But you know me, ever the optimist, the problem solver, the enjoy each day kind of guy. So, while we're preparing for the worst I'm working on solving this problem myself. I'll do most of what my doctor says, but being a problem solver, I've decided I need to figure this out for me. So I've delved into the details, so to speak. You naturopaths will appreciate this and any suggestions you have will be appreciated.
I am on a daily routine of carrot, beet and apple juice. Curcumin. Triple Omega (flaxseed, omega 3,6,and 9, and olive oil). Pro biotics. Vitamin D, B-6, and B-12. Some of these I've been on for awhile. I have always had good results with steroids and am on 50 mg every other day. The steroids boost the chemo and I figure they could boost the effects of these natural vitamins, antioxidants and the like. Curcumin has been discussed in a number of myeloma blogs over the years and more recently has shown not only an ability to increase the effects of antibiotics, but also the death of cancer cells.
And now let's wind up this long post. I understand a few things. First, we never know what is going to happen. The doctors don't know. I don't know. No one knows. So there is no need to fast forward to an unknown outcome. Things will happen as they are supposed to. I firmly believe at any moment in life everything is as it should be. If it doesn't feel right it is only because of my perceptual limitations. I am at peace with whatever happens. Second, having recovered from the high dose chemo, I don't feel much different than before we got the news from Rifkin. My main problem is fatigue. I'm waiting for the weather to settle in to nice spring/summer weather so I can ride my bike, take walks, go on picnics with Susan, and continue to enjoy life. And finally, I don't have the words to express the depth of the gratitude I feel for each and every one of you in my life. I love you.
Dan
Friday, April 29, 2011
Tough Sledding
Growing up in North Dakota my friends and I had plenty of time during the winter to enjoy our winter sports. Sledding was a favorite. We each had our Radio Flyers and would often race down the alleys or bulldog each other as we raced to the end of the alley, hoping to stop before sliding into the street. Bulldogging consisted of sliding up next to another sled and jumping off your sled on top of your friend who was riding his sled. The best bulldoggers could actually steal the sled by pushing the other person off and send him rolling into the snow and ice while riding the stolen sled to victory. It was some tough sledding, especially when competing with a big guy named Duke, who was an expert bulldogger and sled stealer.
I'm hoping those sledding times have toughened me for the latest rounds of treatment. The myeloma has reared its ugly head once again, filling my bone marrow and leaving little room for the good white and red cells. I'm undergoing my second round of high dose chemo (cytoxin) today, in the hospital in Denver. We'll check the progress in a couple of weeks, after I recover from the chemo and then make a plan for the future. No one is suggesting this high dose chemo is going to kill off all the myeloma. The hope is to make a dent so we can use some more traditional chemo that at the present time the docs don't think will work because of the high levels of disease. We are looking at the new drugs, carfilzomib and pomalidomide, but my eligibility for the clinical trials of those drugs is questionable given all the treatment I've had, particularly the allo transplant. There are a few other alternatives that we'll evaluate once I'm through this regime. I am limited to just 2 doses of cytoxin because of its toxicity, so regardless of its effectiveness, we'll have to find another drug soon.
We had a crowd of family for Easter: Susan's brother, my brother Tom, my sister and her family, Julia and Catherine along with a few other friends. Rifkin had carefully orchestrated my recovery from the first high dose chemo so I could participate, which was nice. Lots of love and laughter. All nurtured once again by a fabulous meal prepared by Susan.
The family is quite vigilant as I go through this treatment since the options are narrowing but we remain hopeful and are always grateful for your love and support.
Love,
Dan
I'm hoping those sledding times have toughened me for the latest rounds of treatment. The myeloma has reared its ugly head once again, filling my bone marrow and leaving little room for the good white and red cells. I'm undergoing my second round of high dose chemo (cytoxin) today, in the hospital in Denver. We'll check the progress in a couple of weeks, after I recover from the chemo and then make a plan for the future. No one is suggesting this high dose chemo is going to kill off all the myeloma. The hope is to make a dent so we can use some more traditional chemo that at the present time the docs don't think will work because of the high levels of disease. We are looking at the new drugs, carfilzomib and pomalidomide, but my eligibility for the clinical trials of those drugs is questionable given all the treatment I've had, particularly the allo transplant. There are a few other alternatives that we'll evaluate once I'm through this regime. I am limited to just 2 doses of cytoxin because of its toxicity, so regardless of its effectiveness, we'll have to find another drug soon.
We had a crowd of family for Easter: Susan's brother, my brother Tom, my sister and her family, Julia and Catherine along with a few other friends. Rifkin had carefully orchestrated my recovery from the first high dose chemo so I could participate, which was nice. Lots of love and laughter. All nurtured once again by a fabulous meal prepared by Susan.
The family is quite vigilant as I go through this treatment since the options are narrowing but we remain hopeful and are always grateful for your love and support.
Love,
Dan
Friday, March 25, 2011
Danny Can You Hear Me?
Finally, I bit the bullet, or is it the wallet?, and got hearing aids. I've been messing with this hearing loss since returning from Houston and hoping that my hearing would eventually return or at least improve. No such luck. As mentioned in an earlier post, although the hearing improved somewhat in the left ear, the right ear has gotten very bad. So I now have hearing aids on both ears. What a difference. If I had any doubts about needing them, this has erased those misgivings. I'm not sure what I was hearing before, but it couldn't have been much, given what I can hear now. You've all been warned: no more talking behind my back--I can hear you.
The technology on these devices is amazing. This set has 5 separate programs for such differing environments as loud background noise, music listening, close conversation and talking behind my back. Nah, just kidding on that last one. The devices sense the noise level and move to the appropriate program, which then adjusts the device so I have maximum hearing. I don't have to do a thing to cause these adjustments--all done through the chip in the device, which was programmed with a computer at the doctor's office. Installation of these feels like I just took the mufflers off my ears.
Next week is test week. I've got extensive lab tests, bone marrow biopsy and few others to undergo as part of the vaccine trial I completed. They are allowing me to have these done in Denver. I'll also be talking with Rifkin about the next treatment since the revlimid has hammered my blood counts and isn't consistently holding down my myeloma. My M protein has stayed relatively stable, around 2.7, but the IGGs have jumped from 2800 to 4800 to 3800. The bone marrow biopsy will hopefully provide a better gauge based on the degree of plasma cells detected. Regardless, we'll have to find a different drug(s) to bring the myeloma back in submission. I'm not sure what Rifkin has in mind and I haven't even arrived at my own opinion on the matter. He'll probably go into shock when he hears I don't have an opinion.
Although spring is here, it's still a bit cold for me. I'm waiting for temps consistently in the 70s before I get into a regular bicycling routine. What a wuss I've become. And to think I used to winter camp in Minnesota at minus 30 degree temperatures.
March 23rd was the 6th anniversary of my MM diagnosis. Unbelievable. This has been such an extraordinary journey that I can hardly remember what my life was like before cancer. "But that was in another country, and besides the wench is dead." (from "The Jews of Malta" by Christopher Marlowe). March 24 was brother Mike's birthday--let's just say he's not eligible for Social Security but it's not far away. And March 26 marks the 34th year since Susan and I met on our 2000 mile blind date. Lots to celebrate.
Best to all,
Dan
The technology on these devices is amazing. This set has 5 separate programs for such differing environments as loud background noise, music listening, close conversation and talking behind my back. Nah, just kidding on that last one. The devices sense the noise level and move to the appropriate program, which then adjusts the device so I have maximum hearing. I don't have to do a thing to cause these adjustments--all done through the chip in the device, which was programmed with a computer at the doctor's office. Installation of these feels like I just took the mufflers off my ears.
Next week is test week. I've got extensive lab tests, bone marrow biopsy and few others to undergo as part of the vaccine trial I completed. They are allowing me to have these done in Denver. I'll also be talking with Rifkin about the next treatment since the revlimid has hammered my blood counts and isn't consistently holding down my myeloma. My M protein has stayed relatively stable, around 2.7, but the IGGs have jumped from 2800 to 4800 to 3800. The bone marrow biopsy will hopefully provide a better gauge based on the degree of plasma cells detected. Regardless, we'll have to find a different drug(s) to bring the myeloma back in submission. I'm not sure what Rifkin has in mind and I haven't even arrived at my own opinion on the matter. He'll probably go into shock when he hears I don't have an opinion.
Although spring is here, it's still a bit cold for me. I'm waiting for temps consistently in the 70s before I get into a regular bicycling routine. What a wuss I've become. And to think I used to winter camp in Minnesota at minus 30 degree temperatures.
March 23rd was the 6th anniversary of my MM diagnosis. Unbelievable. This has been such an extraordinary journey that I can hardly remember what my life was like before cancer. "But that was in another country, and besides the wench is dead." (from "The Jews of Malta" by Christopher Marlowe). March 24 was brother Mike's birthday--let's just say he's not eligible for Social Security but it's not far away. And March 26 marks the 34th year since Susan and I met on our 2000 mile blind date. Lots to celebrate.
Best to all,
Dan
Tuesday, March 15, 2011
Kickin' My Butt
If you want to be physically challenged, try exercising with someone 35 years younger than you are. Susan exercises regularly with Julia and manages to stay right with her through a variety of exercise classes, weight lifting, or anything else they might try at the club. I, on the other hand, am prohibited from going to the club because of my chronically low white count. So, Julia and her "friend" Bob asked me to go for a bike ride on Sunday. My first real ride in 2 years. Yes, I rode last year after getting back from Houston, but always in a leisurely manner. Sunday was different. Twenty miles and I was ready to puke. Huffin' and puffin' but I made it. Julia and Bob actually went further while I took a break at the 1o miles mark. But, they got me out and now it's just a matter of doing it regularly.
I had my counts checked on Friday and I am officially neutropenic. My white count is 1.9 and my neutrofils are .9. Nonetheless, Rifkin kept me on revlimid. He said he wants to "push" it to try to reduce my myeloma. I'm all for that. He just warned me to be careful and stay away from crowds. That's fine for now, but once baseball season starts, I've got to be able to get to the ballpark. I continue to reduce my neurontin for my neuropathies. I'm now at 50% dosage of where I was a month ago. The pain and numbness are more noticeable but the clarity of mind is worth it. Neuropathies caused by chemo, such as mine, can resolve over time and I'm hoping some of that is going on as well. Maybe getting feeling back in my feet will help my bike riding.
I also saw my ear doctor on Friday. While the sinus infection has apparently resolved, the hearing has not improved. I will be getting hearing aids for both ears in the next week. The nerves have been damaged from the chemo and my doctor does not believe it will resolve. I've seen as much improvement as he thinks I'm likely to get. While the chemo has obviously kept me alive, the side effects of these toxins have taken their toll. So be it.
Happy St. Patrick's Day, especially to my Irish friend Mari, who has kept me in cards, jokes, sock puppets and many other items to keep me in good humor through these past six years. May the Lord keep you in his hand and not close His fist too tight.
I had my counts checked on Friday and I am officially neutropenic. My white count is 1.9 and my neutrofils are .9. Nonetheless, Rifkin kept me on revlimid. He said he wants to "push" it to try to reduce my myeloma. I'm all for that. He just warned me to be careful and stay away from crowds. That's fine for now, but once baseball season starts, I've got to be able to get to the ballpark. I continue to reduce my neurontin for my neuropathies. I'm now at 50% dosage of where I was a month ago. The pain and numbness are more noticeable but the clarity of mind is worth it. Neuropathies caused by chemo, such as mine, can resolve over time and I'm hoping some of that is going on as well. Maybe getting feeling back in my feet will help my bike riding.
I also saw my ear doctor on Friday. While the sinus infection has apparently resolved, the hearing has not improved. I will be getting hearing aids for both ears in the next week. The nerves have been damaged from the chemo and my doctor does not believe it will resolve. I've seen as much improvement as he thinks I'm likely to get. While the chemo has obviously kept me alive, the side effects of these toxins have taken their toll. So be it.
Happy St. Patrick's Day, especially to my Irish friend Mari, who has kept me in cards, jokes, sock puppets and many other items to keep me in good humor through these past six years. May the Lord keep you in his hand and not close His fist too tight.
Wednesday, March 02, 2011
Vaccine Trial Is Over
No, I've not shut down the blog, although from time to time I think about doing so. I just think you are all tired of hearing about "the scoop on Dan." This has gone on for six years now (on March 23rd). But John Sadwith threatened me with physical harm when I mentioned shutting this down, so on we go.
I just returned from MDAnderson. I have now completed the vaccine trial, having received my third vaccine shot on Monday. They will do the full battery of tests in a month to determine its success. I'm not optimistic about those results, because my IGGs and M protein started rising dramatically about 6 weeks ago, resulting in my going back on maintenance revlimid. That seems to have put a hold on the rising numbers--actually bringing the M protein down from 3.1 to 2.6. My doctor at MDA tells me they will be looking at much more than just the M protein and IGGs to determine the success of the vaccine in a month.
But always being a few steps ahead of my docs, I've already started pressing them for their thoughts on the "long term plan." As always there is no long term plan because it's impossible to predict what condition I will be in down the road. But there are many options available now, including the vaccine made from my M protein, another infusion of Mike's cells, and at least two new drugs that are well on their way to FDA approval (pomalidomide and carfilzomib). The most positive aspect of these discussions is that they always seem to find a drug that I respond to.
With ailments we seem to develop a mindset that generally they can be fixed, we will recover and go on with our lives. That often happens even with some cancers. Then there is this nastiness called myeloma, which gets knocked down but then pops back up--just like me. Hmmmm. Is this a coincidence? For now it doesn't feel like crisis management and that is a relief not to have that hanging over us. Those periods elevate the family's stress level, particularly Susan's. As I think back a year ago, we had just arrived in Houston for the transplant from my brother. That was crisis mode, as my counts were still battered from the Arkansas treatment and a donor transplant (allogeneic) brings many risks. When forced to decide whether to go through with the allo transplant, it really wasn't a choice, as I don't know how to give up. Fortunately, we've navigated those waters for now.
Right now we're dealing with an abysmally low white count (1.7) and a similarly depressed neutrofil count (.9)--these are the really really good white cells that fight disease. So no revlimid for the time being as that is what caused the low counts in the first place. I'll see Rifkin tomorrow and we'll make some decisions about the path forward.
I'm anxious for spring as I don't handle the cold very well. This is the first time in three years we've been in Denver for the winter, although our last two winter vacations to Little Rock and Houston left a lot to be desired.
Best wishes to everyone and thanks for hanging in there with us. We continue to be very grateful for all our family and friends. We love you.
Dan
I just returned from MDAnderson. I have now completed the vaccine trial, having received my third vaccine shot on Monday. They will do the full battery of tests in a month to determine its success. I'm not optimistic about those results, because my IGGs and M protein started rising dramatically about 6 weeks ago, resulting in my going back on maintenance revlimid. That seems to have put a hold on the rising numbers--actually bringing the M protein down from 3.1 to 2.6. My doctor at MDA tells me they will be looking at much more than just the M protein and IGGs to determine the success of the vaccine in a month.
But always being a few steps ahead of my docs, I've already started pressing them for their thoughts on the "long term plan." As always there is no long term plan because it's impossible to predict what condition I will be in down the road. But there are many options available now, including the vaccine made from my M protein, another infusion of Mike's cells, and at least two new drugs that are well on their way to FDA approval (pomalidomide and carfilzomib). The most positive aspect of these discussions is that they always seem to find a drug that I respond to.
With ailments we seem to develop a mindset that generally they can be fixed, we will recover and go on with our lives. That often happens even with some cancers. Then there is this nastiness called myeloma, which gets knocked down but then pops back up--just like me. Hmmmm. Is this a coincidence? For now it doesn't feel like crisis management and that is a relief not to have that hanging over us. Those periods elevate the family's stress level, particularly Susan's. As I think back a year ago, we had just arrived in Houston for the transplant from my brother. That was crisis mode, as my counts were still battered from the Arkansas treatment and a donor transplant (allogeneic) brings many risks. When forced to decide whether to go through with the allo transplant, it really wasn't a choice, as I don't know how to give up. Fortunately, we've navigated those waters for now.
Right now we're dealing with an abysmally low white count (1.7) and a similarly depressed neutrofil count (.9)--these are the really really good white cells that fight disease. So no revlimid for the time being as that is what caused the low counts in the first place. I'll see Rifkin tomorrow and we'll make some decisions about the path forward.
I'm anxious for spring as I don't handle the cold very well. This is the first time in three years we've been in Denver for the winter, although our last two winter vacations to Little Rock and Houston left a lot to be desired.
Best wishes to everyone and thanks for hanging in there with us. We continue to be very grateful for all our family and friends. We love you.
Dan
Sunday, February 06, 2011
Too Many Doctors
Last week was a busy week for my doctors and me. Started the week with a trip to MDAnderson in Houston where I met Mike and we had blood work and then met with my doc, Dr. Q. I was nervous about the visit as my IGGs had jumped to 4700 (normal 700--1600) and M spike was 3.1. My red cells have also been dropping; hemoblogin was at 9.1 the week before. Mike took the job of scrivener so I could have a dialogue with Dr. Q. To state the obvious the stabilizing effects of the transplant have disappeared. I haven't shown any response to the Donor Lymphocyte Infusion (DLI) and vaccine. Despite not showing a response I feared I would be withdrawn from the clinical trial and lose the opportunity to receive the vaccine made from my M protein. So, to cut through it: I have been placed back on maintenance revlimid and am still eligible for the clinical trial. I am "debating" the dosage with Dr. Rifkin. He wants me on 5 mg and I want to be on 15 mg. The higher the dosage, of course, the more likely the myeloma will be reduced. Rifkin is concerned that my white count will plummet, as it has in the past, and he will be forced to take me off the revilimid completely. The proverbial Hobson's choice: Low dose revlimid less likely to stop the growth of the myeloma; higher dose more likely to cause white count to drop. We've compromised at 10 mg. Blame it on the mediator in me.
I asked Dr. Q whether Mike's cells had been "coopted" by me and were now incapable of attacking the myeloma. On the contrary, they still have the potential to take down the myeloma, there is just too much myeloma for them to overtake it at this point. Hence, my push for the higher dosage of revlimid.
Dr. Q also went through numerous other options that would be available if the vaccines and the revlimid don't work. Suffice to say MDA is running a wide variety of clinical trials and it sounds lie there are many options on the shelf. While it is disappointing that I didn't get a longer respite following the transplant, so be it. It is what it is.
My hemoglobin was down to 7.7 when in Houston. Thus, when I returned on Tuesday Susan drove me immediately from the airport to the clinic so I could get my blood "typed and crossed" in preparation for a transfusion on Wednesday. I received 2 units of blood on Wednesday. Drs. Rifkin and Q are a bit puzzled by the drop in red cells and are exploring whether it is Mike's red cells attacking mine. Mike's cells need to focus on my myeloma and leave my red cells alone.
And then there's my hearing. These flights really mess up my ears ever since my ear drum burst last June. Only this time it's my right ear. I saw the ENT (ear, nose throat specialist) on Friday and they've documented nerve damage in my right ear and a severe hearing loss since I last had it checked in August. He doesn't really have an explanation, other than drugs, i.e., chemo and current anti fungals and anti virals. I will get hearing aids eventually, but first would like my hearing loss to stabilize. It goes up, it goes down. I guess I need to stay off airplanes. Not much chance of that.
And on a positive note, it feels like my neuropathies are gradually improving. Fewer shooting pains and less frequent numbness. I've reduced my neurontin by 25% to see if I can tolerate a reduction. That would be good.
Despite all this I don't feel too poorly. Still have multiple issues but am gradually accepting them. I do get frustrated with weeks like last, when I spend most days at the clinic/hospital or in some doctor's office.
I think that's enough for now. The ladies in my life are all fine. Unlike me they are hitting the health club with a vengeance. Catherine signed up this year's NYC triathalon and she seems to be starting her conditioning already. I guess that means we'll be in NYC in August to cheer her on.
Love to all,
Dan
I asked Dr. Q whether Mike's cells had been "coopted" by me and were now incapable of attacking the myeloma. On the contrary, they still have the potential to take down the myeloma, there is just too much myeloma for them to overtake it at this point. Hence, my push for the higher dosage of revlimid.
Dr. Q also went through numerous other options that would be available if the vaccines and the revlimid don't work. Suffice to say MDA is running a wide variety of clinical trials and it sounds lie there are many options on the shelf. While it is disappointing that I didn't get a longer respite following the transplant, so be it. It is what it is.
My hemoglobin was down to 7.7 when in Houston. Thus, when I returned on Tuesday Susan drove me immediately from the airport to the clinic so I could get my blood "typed and crossed" in preparation for a transfusion on Wednesday. I received 2 units of blood on Wednesday. Drs. Rifkin and Q are a bit puzzled by the drop in red cells and are exploring whether it is Mike's red cells attacking mine. Mike's cells need to focus on my myeloma and leave my red cells alone.
And then there's my hearing. These flights really mess up my ears ever since my ear drum burst last June. Only this time it's my right ear. I saw the ENT (ear, nose throat specialist) on Friday and they've documented nerve damage in my right ear and a severe hearing loss since I last had it checked in August. He doesn't really have an explanation, other than drugs, i.e., chemo and current anti fungals and anti virals. I will get hearing aids eventually, but first would like my hearing loss to stabilize. It goes up, it goes down. I guess I need to stay off airplanes. Not much chance of that.
And on a positive note, it feels like my neuropathies are gradually improving. Fewer shooting pains and less frequent numbness. I've reduced my neurontin by 25% to see if I can tolerate a reduction. That would be good.
Despite all this I don't feel too poorly. Still have multiple issues but am gradually accepting them. I do get frustrated with weeks like last, when I spend most days at the clinic/hospital or in some doctor's office.
I think that's enough for now. The ladies in my life are all fine. Unlike me they are hitting the health club with a vengeance. Catherine signed up this year's NYC triathalon and she seems to be starting her conditioning already. I guess that means we'll be in NYC in August to cheer her on.
Love to all,
Dan
Sunday, January 16, 2011
The Royal Treatment
Susan and I returned from Houston on Saturday and boarded a plane for Chicago on Tuesday to meet with the Board of Directors of The Gateway for Cancer Research --a nonprofit that funds cancer research and which is funding the clinical trial I'm in. The people at the Gateway could not have more generous in taking care of us. First class airline tickets, stretch limo to pick us up at the airport and to take us to our various appointments and then back to our hotel and the airport for our return flight. Our meeting with the Board was scheduled for about 15 minutes but we were there for more than an hour. The Chairman of the Gateway Board, Richard Stephenson, is passionately committed to finding cures for cancer. His commitment comes from his experience with his mother's death from cancer. As a result he founded the Cancer Treatment Centers of America (CTCA), which has 5 facilities around the country. CTCA provides all of the funding for the administrative costs of the Gateway Foundation, thus, 99.9% of funds donated to the Gateway go to cancer research. Even more amazing, the organization (being financially supported by CTCA), funds clinical trials at cancer centers around the country (such as MDA), even though such institutions are competitors of CTCA.
After the Board heard from Susan and me, Mr. Stephenson immediately asked us if we could stay an extra day in order for me to be seen by a variety of specialists at CTCA to see if they could help me with some of the long term side effects I've got from all the chemo. So, we took an extra day, and I was seen by a doctor, a physical therapist, a nutritionist, and a naturalpathic doctor. CTCA has a holist approach to treatment and thus has all these specialists on staff. Without boring you with the details, the doctor provided instant help for some of my back pain and the others had some recommendations we're going to follow up on. Gifts keep falling down upon us for no reason we can think of and we continue to be full of gratitude.
All in all it was a very interesting and helpful trip. Once we got home, I got terribly sick, but am recovering quickly. Fortunately Dr. Rifkin did not hospitalize me despite the very high temp. I'm sure it's just too much travel over the last 2 weeks.
I'll check in after my next trip to Houston, sometime in February.
Dan
After the Board heard from Susan and me, Mr. Stephenson immediately asked us if we could stay an extra day in order for me to be seen by a variety of specialists at CTCA to see if they could help me with some of the long term side effects I've got from all the chemo. So, we took an extra day, and I was seen by a doctor, a physical therapist, a nutritionist, and a naturalpathic doctor. CTCA has a holist approach to treatment and thus has all these specialists on staff. Without boring you with the details, the doctor provided instant help for some of my back pain and the others had some recommendations we're going to follow up on. Gifts keep falling down upon us for no reason we can think of and we continue to be full of gratitude.
All in all it was a very interesting and helpful trip. Once we got home, I got terribly sick, but am recovering quickly. Fortunately Dr. Rifkin did not hospitalize me despite the very high temp. I'm sure it's just too much travel over the last 2 weeks.
I'll check in after my next trip to Houston, sometime in February.
Dan
Sunday, January 09, 2011
Millions of Mighty Mikes
Are you ready for a biology lesson?
I received 10 million of Mike's T cells on Friday, which were then boosted with a vaccine made from a protein (not my protein) and a white cell booster (GM-CSF--granulyte macrophage colony stimulating factor.) GM-CSF functions as a white blood cell growth factor. GM-CSF stimulates stem cells to produce granulocytes (neutrophils, eosinophils, and basophils) and monocytes. Monocytes mature into macrophages and are part of the immune/inflammatory cascade, by which activation of a small number of macrophages can rapidly lead to an increase in their numbers, a process crucial for fighting infection. (A T-cell is a type of infection-fighting white cell in the blood. Its normal role is to kill virus infected cells and some cancer cells. )
I received 10 million of Mike's T cells on Friday, which were then boosted with a vaccine made from a protein (not my protein) and a white cell booster (GM-CSF--granulyte macrophage colony stimulating factor.) GM-CSF functions as a white blood cell growth factor. GM-CSF stimulates stem cells to produce granulocytes (neutrophils, eosinophils, and basophils) and monocytes. Monocytes mature into macrophages and are part of the immune/inflammatory cascade, by which activation of a small number of macrophages can rapidly lead to an increase in their numbers, a process crucial for fighting infection. (A T-cell is a type of infection-fighting white cell in the blood. Its normal role is to kill virus infected cells and some cancer cells. )
However the body doesn’t have enough T-cells to combat large cancerous tumours, and cancer cells often develop protective mechanisms to avoid them being recognized by the body as a disease. That's why they boosted these T cells with a vaccine and GM-CSF. I will not receive more of Mike's T cells for the time being, but I will receive the vaccine and GM-CSF shots at 4 and 8 week intervals.
This protocol is part of the clinical trial I am enrolled in. Because I'm the first one in the trial, the Gateway Foundation, which is funding the trial, is flying me to Chicago this coming week to talk to their Board of Directors about my disease and my participation in the trial. That should be interesting.
This clinical trial is a Big Deal at MDAnderson. Mike came into Houston on Wednesday for preliminary blood work before they harvested his cells on Friday. I was there starting Tuesday for the whole battery of tests. On Thursday they harvested cells from me purely to do further research on. Then on Friday, after Mike's cells were collected I returned to the clinic in the evening and received his cells, the vaccine and the GM-CSF. During that process we met the researcher who made the vaccine. A young guy who was quite excited to be a part of this project. Dr. Larry Kwak is the principal investigator in charge of this trial. Dr. Kwak has spent 20 years working on developing cancer vaccines. He is world renowned and everyone at MDA speaks of him with great respect.
Of course, Mike became quite well known in the apheresis (the drawing and separating of blood components) unit. Not sure why. Was it because he constantly referred to himself as "number one guinea pig?" Was it his mooing out loud after he was given a bovine substance with one of his meds? Was it a nurse running from him so he couldn't get a picture of them together? He is quite a character. But selfish he's not. He's made numerous trips to Houston over the past year to have his stem cells collected, to have blood work, to have various tests, to get shots, to have his T cells collected, and he's had to give himself shots at home. Similarly Susan's brother has been a godsend: opening his house to us for 4 months, driving us all over town and to and from the airport, keeping his refrigerator and cupboards full of food, having dinners waiting for us after long days at the hospital, bringing me my daily almond croissant at the hospital, getting us movies to watch at home and just taking care of us through some tough times. Yeh, we're pretty fond of our brothers.
So I guess we'll just let Mike's super charged T cells get to work in my blood. Will report back once we have info on the progress.
Dan
Monday, December 20, 2010
Amped Up
As Emeril would say, BAM! We're amping it up for the holidays. Velcade dose doubled, steroids quadrupled, and the treatment is now twice a week, as opposed to once a week. Rifkin and I made this decision today after first looking at my blood counts, all of which were "excellent" and considering that my IGGs and M protein were rising. Rifkin agreed with me that we want to try to decrease those myeloma numbers in advance of receiving my brother's white cells next month to give them the best chance of choking down this myeloma. I jokingly suggested that we first call my family to get their input as they're going to have to live with me during these next few weeks. I was on this dosage 4 years ago, but it was the first course of treatment following my first transplant. A whole lot of toxic waste has passed through these veins since then and I don't tolerate this stuff like I used to. But I was the one who initially suggested it, so I wasn't going to back down when Rifkin agreed. It should be an exciting Christmas at the Patterson household this year.
Joy and Peace to all,
Dan
Joy and Peace to all,
Dan
Sunday, December 19, 2010
Tired of Viral Infections
A couple of years ago I met a man at the clinic who had had an allo transplant. He told me he was doing well, but tired of always battling some infection. I know what he means. This immunosuppression makes one vulnerable to all bugs. After recovering from the shingles, without any lasting side effects I immediately contracted RSV (respiratory synctial virus), a viral infection infants and young children often get.---oh yeh, and immuno suppressed people. I had this about four years ago and it took 2 weeks to get rid of. I'm about 10 days into this one. I've decided I need to curtail my encounters with larger groups of people. Not that I was a big socialite, but I have let down my guard and I think it's time to put the barriers back up.
The downside of these infections is that I can't stay on my maintenance regime. I've only had 2 weeks of velcade over the last 6 weeks. The result is that my IGGs have risen to 2800 and M protein is up to 2.0. These are not alarming numbers, but in the face of an allo transplant that is supposed to give me the chance to have the myeloma eradicated, we're moving in the wrong direction. Fortunately, I will be returning to MD Anderson soon for my DLI (Donor Leukocyte Infusion--an infusion of white cells) from my brother. I am scheduled to receive 3 infusions over the next couple of months. Mike has been to Houston so often in preparation for these infusions that I told him we should rent him an apartment there. He voices no complaints. I can't say he's a saint, but he's one hell of a brother.
We've got our tree up, Catherine will be here in a few days and we're planning a quiet family Christmas. We wish you all a Merry Christmas, Happy Holiday, or whatever you choose to celebrate.
Dan
The downside of these infections is that I can't stay on my maintenance regime. I've only had 2 weeks of velcade over the last 6 weeks. The result is that my IGGs have risen to 2800 and M protein is up to 2.0. These are not alarming numbers, but in the face of an allo transplant that is supposed to give me the chance to have the myeloma eradicated, we're moving in the wrong direction. Fortunately, I will be returning to MD Anderson soon for my DLI (Donor Leukocyte Infusion--an infusion of white cells) from my brother. I am scheduled to receive 3 infusions over the next couple of months. Mike has been to Houston so often in preparation for these infusions that I told him we should rent him an apartment there. He voices no complaints. I can't say he's a saint, but he's one hell of a brother.
We've got our tree up, Catherine will be here in a few days and we're planning a quiet family Christmas. We wish you all a Merry Christmas, Happy Holiday, or whatever you choose to celebrate.
Dan
Tuesday, November 30, 2010
The Roids Are Back
I got juiced with steroids today and it seems I'll be up much of the night. Counts are good. White count at 4.2, which is really good for me (3.0 is normal). Hematocrit is at 34, which is also very good for me (normal being 40+). I'm going to a shot of velcade and steroids every week until we head out for MD Anderson for my infusion of additional white cells from Mike. This weekly regime is at my request (god Rifkin must be tired of dealing with this type A personality). I asked why we were on an every other week regime when I still had residual myeloma in me. He immediately capitulated to a once a week regime. When I was taking depositions I never had such success with my interrogations!
Everyone is doing well. Nothing new to report. The shingles have calmed down although I still have the nerve pain in the rear end. Oh, the indignity of it all. These past months have been good in that they have allowed me time to discover that I, in fact, can live with the many limitations this cancer and its treatment have bestowed on me. While I know I have been dealing with them constantly for the past five years, it's mostly felt like I've been moving from one crisis to another. These last months are a relief in that I am not in nor anticipating any impending major assault. Learning to live with the many issues I'm left with (mainly as side effects from the chemo, like loss of smell, taste, neuropathies, daily indigestion, fatigue, etc.) it is always a challenge, but as Susan regularly reminds me, "you're alive." And to that I say, "you're right." And that's that. I'm alive, I'm trying to stay active, I always so grateful for everyone's support. The gratitude for my brother Mike's unselfish act of being my donor only deepens with time. He's had to make multiple trips to Houston, administer shots at home, endure bone pain and for no personal reward. What a brother! With that kind of support how could I not be happy. A good frame of mind for the upcoming holidays.
I wish for you all the same peace and happiness I feel every day.
Dan
Everyone is doing well. Nothing new to report. The shingles have calmed down although I still have the nerve pain in the rear end. Oh, the indignity of it all. These past months have been good in that they have allowed me time to discover that I, in fact, can live with the many limitations this cancer and its treatment have bestowed on me. While I know I have been dealing with them constantly for the past five years, it's mostly felt like I've been moving from one crisis to another. These last months are a relief in that I am not in nor anticipating any impending major assault. Learning to live with the many issues I'm left with (mainly as side effects from the chemo, like loss of smell, taste, neuropathies, daily indigestion, fatigue, etc.) it is always a challenge, but as Susan regularly reminds me, "you're alive." And to that I say, "you're right." And that's that. I'm alive, I'm trying to stay active, I always so grateful for everyone's support. The gratitude for my brother Mike's unselfish act of being my donor only deepens with time. He's had to make multiple trips to Houston, administer shots at home, endure bone pain and for no personal reward. What a brother! With that kind of support how could I not be happy. A good frame of mind for the upcoming holidays.
I wish for you all the same peace and happiness I feel every day.
Dan
Thursday, November 11, 2010
Shingles Belong On A Roof
Ever since I was diagnosed I've taken medication (acyclovir) to prevent shingles. Shingles arises from the same virus that causes chicken pox and shares many of its same awful features, including the blistery itchy rash. You only get shingles if you've had chicken pox. The virus then goes dormant in your nerve roots. It can "wake up" in older and immune suppressed people and the virus shows itself as shingles. I've been on automatic refill for this drug at my Target pharmacy. Well, they didn't fill it last month and I didn't notice that I was out, given my 12 or so drugs I take daily. Three weeks of no protection and the opportunistic virus rears its head and bites me in the ass. Unfortunately I have the rash and the significant nerve pain in the most inconvenient of places--my left buttocks! Are you kidding me? I want to scream, "what next" but I'm afraid of what could be next. I'm constantly reminded of John Lennon screaming, "I've got blisters on my fingers," on the Abbey Road albumn. My refrain: I've got blisters on my ass.
Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.
Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.
Dan
Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.
Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.
Dan
Thursday, October 28, 2010
In The Eye of the Beholder
Starting at the end of the story: I'm sitting in the waiting room at the clinic on Monday waiting for my velcade shot. Nurse Patty, whom I've known for most of my years of treatment comes in, chart in hand, announcing, "Dan? Dan?" I waive my hand and stand up to accompany her into the treatment room. She whispers to me, "oh, I was hoping it wasn't you." I look at her quizically. "What are you talking about? Is something wrong?" I had already received my blood counts for the day and met with the doctor. I was told everything was fine. She says, "you're getting velcade. I'm so sorry." I again respond, "I don't understand. What's wrong." She says, "I thought you were done with treatment." "Oh, you thought I was in remission and have now come out of it?" "Exactly," she says, "you looked so good, and still do. You don't look like you've come out of remission." I told her that I haven't had a day of remission in 5 1/2 years and was quite excited about starting velcade as it might help reduce my residual myeloma before my donor leukocyte infusion (DLI). So, she feels bad and I feel good about my getting treatment. And that's the way it goes.
Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.
Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.
Happy Halloween to all.
Dan
Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.
Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.
Happy Halloween to all.
Dan
Tuesday, October 12, 2010
Big Fella Unleashed
Those of you who grew up with the Big Fella, Mr. Pete and Fuzz will understand the potential repercussions associated with releasing the Big Fella's cells in me. Although I was told that I could be on anti rejection meds for years, I'm off them after six months. The anti rejection meds are now on the shelf. We'll have to be even more vigilant for signs of GVHD (graph vs. host disease). Although I think the fact that I haven't had any makes it less likely, I'm told that's not the case. Doesn't make sense to me.
My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.
I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.
The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.
I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*
*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.
Dan a/k/a The Fuzz (circa 1970 when I had hair)
My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.
I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.
The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.
I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*
*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.
Dan a/k/a The Fuzz (circa 1970 when I had hair)
Thursday, October 07, 2010
The Incredible Shrinking Man
I forgot to mention, in the last post, the varied, but discouraging, results of my height measurements. I had 2 measurements taken by 2 different nurses within 20 minutes of one another. First it's important to know that each of them could not have been taller than 5 feet, with heels, so how they could see where to place the measuring bar is beyone me. Nonetheless, the first measurement had me at 5'7"; the second at 5'7 1/2". YIKES. Either one is shrinkage. In March 2005 I was 5'11 3/4". In July, after my spine collapsed, I was 5'8". I'm continuing to shrink--but only in stature. In this way, I guess I have many more people to look up to.
Tuesday, October 05, 2010
Time in Texas
Much to say and most of it good. I've spent the better part of the last 2 weeks in Texas. First, at MDA and then a return trip to Tyler for my nephew, Kyle's, wedding. (Kyle is Mike's boy). The wedding was a great celebration. Kyle has married a beautiful young lady, Gennie. All of Mike's siblings (Tom, Kathy and me) made it to the wedding along with our mother. We (Susan, Catherine, Julia and I) spent many vacations with Kyle and his brothers, skiing, canoeing, going to the beach. I enjoyed seeing all these guys now that they've become young men. While some would say it makes you feel old, it made me smile the entire weekend. I so appreciated that I was able to participate in this life event for Kyle and his family. The last five years have made me very grateful to be able to spend time with my family. Tom has a few pictures from the wedding posted on his blog: www.bigfrankdickinson.blogspot.com.
The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.
We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.
While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.
Our best to everyone.
Love,
Dan
The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.
We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.
While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.
Our best to everyone.
Love,
Dan
Monday, September 20, 2010
MDA
On the way to MDA on Tuesday for 3 days of testing and a meeting with my doc. This is my 6 month checkup (6 mos. from transplant) and since I have had no significant issues since being discharged in mid June I'm not expecting any surprises. Mike was there last week signing the paperwork to commence the vaccine trial. Once I sign the last documents they'll begin making the vaccine (which will take about 3 months). Then a 2 month period for Mike to receive the vaccine and then I get more of his cells. I'll give more detail once I return next week.
Dan
Dan
Monday, September 06, 2010
MDA, mountains, and a birthday surprise
First the numbers report: IGGs 1909, M protein 1.5. These are essentially the same as they were in late March and June. Stable is the word. White count has come up to 2.8, which is better than it has been in some time. Not sure why, but we'll keep our fingers crossed.
My first return visit to MDA will occur in about 2 weeks. This is my 6 month checkup and will involve 3 or 4 days of testing and a visit with my doctor. They will also review the protocol for the vaccine clinical trial I will be participating in. It will take about 2 to 3 months to make the vaccine. The production will begin once MDA reviews the protocol with me one more time. Then Mike will start his visits to MDA to begin the process of vaccine injections. That will take 2 months. I will join him for the last visit as they will harvest his cells and immediately give them to me. Then I have about a year of visits as they monitor my response. If it is not what they expect they can give me a couple of more injections of Mike's cells. This all has its risks as outlined in the 10 page informed consent. But I don't have any other options, so we go forward.
In the meantime I am trying to have a life. I'm able to ride up to 12 miles on my bike. I wouldn't win any races, but the exercise is no doubt good for me. This is complemented with twice a week physical therapy sessions. I am too embarrassed to admit to the low amount of weight I am working with, buy my therapist assures me I will improve.
My brother Tom and I took a short vacation last week. Now a guy like me who does mostly nothing doesn't need a vacation. But Tom did. So we headed up to a cabin on a mountain lake in the Colorado mountains. The setting was gorgeous. My activity wasn't any greater there, although I did some hiking (walking?). I got enough of a taste that I'm hoping to be able to climb a fourteener next summer (a 14,000 foot high mountain for you non Coloradoans). I will have to see some improvement in my neuropathies, leg strength, and lung capacity, but one must set goals. It'll give me something to work on over the winter. (I had begun "bagging" fourteeners a few years before I was diagnosed and managed to reach the top of 8 peaks. Only 44 left to go!)
And finally, the birthday surprise. Last Friday was my 58th birthday. Julia requested that we stop over at her apartment before we went out for dinner, as she wanted me to open my present before we went to dinner. As we entered her apartment, I saw a large box, wrapped in birthday wrapping paper. I pulled the paper away, lifted the top and saw an old blanket. As I pulled the blanket up, out jumped......Catherine, yelling "Happy Birthday." I can honestly say it is the best surprise of my life. We had a great dinner with the girls and Tom, followed by a relaxing weekend.
We continue to be very grateful for all who have carried us these past years. I feel like I am reaping the benefits this year as I feel better than I have in 2 years.
Dan
My first return visit to MDA will occur in about 2 weeks. This is my 6 month checkup and will involve 3 or 4 days of testing and a visit with my doctor. They will also review the protocol for the vaccine clinical trial I will be participating in. It will take about 2 to 3 months to make the vaccine. The production will begin once MDA reviews the protocol with me one more time. Then Mike will start his visits to MDA to begin the process of vaccine injections. That will take 2 months. I will join him for the last visit as they will harvest his cells and immediately give them to me. Then I have about a year of visits as they monitor my response. If it is not what they expect they can give me a couple of more injections of Mike's cells. This all has its risks as outlined in the 10 page informed consent. But I don't have any other options, so we go forward.
In the meantime I am trying to have a life. I'm able to ride up to 12 miles on my bike. I wouldn't win any races, but the exercise is no doubt good for me. This is complemented with twice a week physical therapy sessions. I am too embarrassed to admit to the low amount of weight I am working with, buy my therapist assures me I will improve.
My brother Tom and I took a short vacation last week. Now a guy like me who does mostly nothing doesn't need a vacation. But Tom did. So we headed up to a cabin on a mountain lake in the Colorado mountains. The setting was gorgeous. My activity wasn't any greater there, although I did some hiking (walking?). I got enough of a taste that I'm hoping to be able to climb a fourteener next summer (a 14,000 foot high mountain for you non Coloradoans). I will have to see some improvement in my neuropathies, leg strength, and lung capacity, but one must set goals. It'll give me something to work on over the winter. (I had begun "bagging" fourteeners a few years before I was diagnosed and managed to reach the top of 8 peaks. Only 44 left to go!)
And finally, the birthday surprise. Last Friday was my 58th birthday. Julia requested that we stop over at her apartment before we went out for dinner, as she wanted me to open my present before we went to dinner. As we entered her apartment, I saw a large box, wrapped in birthday wrapping paper. I pulled the paper away, lifted the top and saw an old blanket. As I pulled the blanket up, out jumped......Catherine, yelling "Happy Birthday." I can honestly say it is the best surprise of my life. We had a great dinner with the girls and Tom, followed by a relaxing weekend.
We continue to be very grateful for all who have carried us these past years. I feel like I am reaping the benefits this year as I feel better than I have in 2 years.
Dan
Wednesday, August 18, 2010
You Can't Make This Stuff Up--Amended
I've been calling my health insurer trying to get some explanation regarding a claim for reimbursement for mileage and some costs for my donor. The claim office says "call the transplant center". The transplant center says, "we don't handle claims, call the claims center." Today I finally get someone who will talk to me. After much cross examination by me I learn that in fact my claim has been processed and a check has been issued. Fine, so I ask, "to whom was the check made payable and where was it sent." The answer: "the check was made payable to 'Transportation Meals and Lodging' and it was sent to [the insurer's] PO Box in California." Naturally I asked if she had a phone number for this 'Transportation Meals and Lodging' fellow as he had my check and I wanted it back. No such luck. But she has initiated an "investigation" to determine just what happened with my claim and check.
I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.
I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.
Subscribe to:
Posts (Atom)
