Although blood is drawn weekly, the blood work deemed most important is that which is drawn the first day of the first week of each cycle. So, for the first cycle of revlimid here are the numbers: IGGs 2300 (down from 4600); M protein 1.7 (down from 3.0). We are all quite encouraged by this response. Other data is also good. White count is back up to 2.6 from last week's 1.9. Platelets 88 (OK for me). Creatinine is down to 1.1--in normal range again, down from 1.6.
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.
Dan
Showing posts with label revlimid. Show all posts
Showing posts with label revlimid. Show all posts
Monday, December 28, 2009
Wednesday, December 09, 2009
Pneumonia Comes Early This Year
I have had pneumonia for each of the past 5 years, usually in February. This year it hit me in December and I was ordered to the hospital last Friday. Nothing like checking into the hospital for the weekend. But I broke out, am home and feel much better. A few IV antibiotics seem to do the trick. This stuff shows up in the exact same place in my left lung every year. The CT scan did not show any obstruction or scar tissue so I'm saved from having a scope shoved down my throat. I do know that you can develop a susceptibility to this stuff and it seems I've got that.
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.
Dan
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.
Dan
Wednesday, December 02, 2009
And A Few More Things
Remember all those baby diseases, like measles, mumps, etc.? Well, it seems whatever immunities I had have been wiped out by the high dose chemo and transplant. I have no immunities to mumps, measles, polio, rubella, hepatitus A, B, or C, tetanus, and probably a few others. The debate among my doctors is whether to vaccinate me now or wait until I've finished with my chemo and/or next transplant. I guess I'll stay away from infants and unvaccinated small children.
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.
Dan
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.
Dan
Tuesday, December 01, 2009
Revlimid Revisited
One week of revlimid down, 11 (or 17) to go. Having been on revlimid before, I expected to tolerate it fairly well and but for the dizziness it's going OK. I suspect the dizziness is due to the combining every other day prednisone with it. Last time I only took steroids once a week with it. Anyway, not surprisingly it's had an effect on my blood counts. White count dropped a bit from 3.4 to 2.8. Hemoglobin is down to 9.9 from 10.1. Platelets are taking the major beating, having dropped 46 points, from 117 to 71. That explains the bruising on my arms and legs. The slightest bump and I've got a big black and blue mark. Adds to the image of being a warrior, I guess.
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.
Dan
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.
Dan
Friday, November 13, 2009
Getting Reved Up
As expected, I will return to a revlimid regime. That is the consensus of the docs at M.D. Anderson and Mayo. One pill (15 mg) per day, along with my every other day prednisone. Initially Rifkin was going to couple it with dexamethasone, rather than prednisone (both steroids, but they act a bit differently with the revlimid). But after much discussion with Susan, who reported (she is always the Greek chorus in our doctor visit) that I was handling the prednisone quite well, in fact, maybe too well, as I always seemed to be happy and laughing--particularly at my own jokes, Rifkin said, in that case we'd stay with prednisone and keep me happy. He did say we might change over to dex if the data suggests dex to be a more effective boost for the revlimid.
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.
Dan
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.
Dan
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