I'm sorry you are having such a bad time post transplant.
I had a transplant in October, and my peripheral neuropathy accelerated very fast after the melphalan infusion. By the time I was released from the hospital, I could not walk without the aide of a walker. The neuropathy in my feet was severe (and still is), and the motor nerves in my legs were affected by the RVD and melphalan treatments.
My transplant was a total failure and I'm now being treated with Kyprolis and dex. My neurologist is treating me with IVIG (immunoglobulin) infusions, and the nerves in my legs are starting to respond.
I would suggest you seek treatment immediately for your neuropathy and insist that your joint and muscle pain be properly diagnosed and treated. The longer you wait, the harder it will be to treat and/or recover.
I wish you all the best, and a long remission from your transplant.
Forums
Re: Autologous stem cell transplant failure?
Sorry to hear your transplant was a failure, Dano. How discouraging. But don't despair, the newer drugs may prove to be excellent.
My doc will test blood in 2 weeks to restage disease by proteins and PEP but is not doing BMB until Day 100, so that is another month out. Time will tell if I got any kind of response. My blood counts are still low but climbing slowly, no transfusions needed.
My doc did give me clearance for acupuncture and I've already had two sessions. I am beginning to feel a bit of relief, but it will take 4 to 5 treatments to really know. Pain and neuropathy is worst it's ever been. I can't believe one goes through hell of transplant then ends up like this.
My doc is sending me to rheumatologist for work up of muscles and muscle biopsy to see if something else is going on. She also asked if I would like to go to pain clinic. I told her not yet, I will try acupuncture then break out Lyrica (pregabalin) if need be. If nothing works and rheumatologist comes up with nothing, then I will go to pain clinic
I have heard about the immunoglobulin treatments. Don't know if that is where I am headed, but glad to know it is something available and is working for you. Glad to hear your nerves are responding. If nothing else pans out for me, it may be what I need too. Time will tell.
Thanks for your post.
My doc will test blood in 2 weeks to restage disease by proteins and PEP but is not doing BMB until Day 100, so that is another month out. Time will tell if I got any kind of response. My blood counts are still low but climbing slowly, no transfusions needed.
My doc did give me clearance for acupuncture and I've already had two sessions. I am beginning to feel a bit of relief, but it will take 4 to 5 treatments to really know. Pain and neuropathy is worst it's ever been. I can't believe one goes through hell of transplant then ends up like this.
My doc is sending me to rheumatologist for work up of muscles and muscle biopsy to see if something else is going on. She also asked if I would like to go to pain clinic. I told her not yet, I will try acupuncture then break out Lyrica (pregabalin) if need be. If nothing works and rheumatologist comes up with nothing, then I will go to pain clinic
I have heard about the immunoglobulin treatments. Don't know if that is where I am headed, but glad to know it is something available and is working for you. Glad to hear your nerves are responding. If nothing else pans out for me, it may be what I need too. Time will tell.
Thanks for your post.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Had SPEP this past week and it has almost doubled post stem cell.
Values pre SCT on November 25, 2014 were:
"abnormal band in gamma region identified as monoclonal IgG kappa now represents by densitometry roughly 7% (420 mg/dl) of total protein"
Kappa free light chain level - 31.2
IgG level - 861
Values 60 days post SCT on March 10, 2015 are:
"abnormal band in gamma region identified as monoclonal IgG kappa now represents by densitometry roughly 13% (940 mg/dl) of total protein
Kappa free light chain level - 46.3
IgG level - 1303
Should I be concerned that the blood labs show rise in myeloma cells 60 days post SCT, or is it too early to be concerned?
I get a BMB in another month which will be more conclusive, I suppose, but still, these blood labs do not seem like good news.
Also, I notice most patients on the Beacon express their values as M-spikes. The hospital lab I go to measure values differently, as shown above. Is one method more accurate or preferable over the other?
Values pre SCT on November 25, 2014 were:
"abnormal band in gamma region identified as monoclonal IgG kappa now represents by densitometry roughly 7% (420 mg/dl) of total protein"
Kappa free light chain level - 31.2
IgG level - 861
Values 60 days post SCT on March 10, 2015 are:
"abnormal band in gamma region identified as monoclonal IgG kappa now represents by densitometry roughly 13% (940 mg/dl) of total protein
Kappa free light chain level - 46.3
IgG level - 1303
Should I be concerned that the blood labs show rise in myeloma cells 60 days post SCT, or is it too early to be concerned?
I get a BMB in another month which will be more conclusive, I suppose, but still, these blood labs do not seem like good news.
Also, I notice most patients on the Beacon express their values as M-spikes. The hospital lab I go to measure values differently, as shown above. Is one method more accurate or preferable over the other?
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Hi Melissa,
The way your lab reports represent your abnormal protein band (monoclonal protein) is just a different way of expressing the same thing as an M-spike. One is not more accurate than another.
13% (940 mg/dL) = an M-spike of 0.94 g/dL. If you go back and look at your SPEP lab test, you will likely find that the total protein value on that report is just about 7.2 g/dL.
I'm not a doc , but I've read many times that one should not worry too much about the preliminary tests right after an SCT. You should instead start evaluating the response 100 days post-transplant (about a month from now) so that your immune system has had more of a chance to reconstitute itself. Things will be bouncing around in the meantime.
Note Dr. Shain's comments in the forum thread "What post-SCT paraprotein (M-spike) indicates success?" (started July 4, 2014):
Hope this makes you feel a bit less apprehensive.
The way your lab reports represent your abnormal protein band (monoclonal protein) is just a different way of expressing the same thing as an M-spike. One is not more accurate than another.
13% (940 mg/dL) = an M-spike of 0.94 g/dL. If you go back and look at your SPEP lab test, you will likely find that the total protein value on that report is just about 7.2 g/dL.
I'm not a doc , but I've read many times that one should not worry too much about the preliminary tests right after an SCT. You should instead start evaluating the response 100 days post-transplant (about a month from now) so that your immune system has had more of a chance to reconstitute itself. Things will be bouncing around in the meantime.
Note Dr. Shain's comments in the forum thread "What post-SCT paraprotein (M-spike) indicates success?" (started July 4, 2014):
In my practice, I wait until day 100 post-transplant before making too many decisions. At that time, I re-stage my patients: repeat SPEP, UPEP, Ig, SFLC, bone marrow biopsy, and bone survey (+/- other imaging, as the patients presentation requires). So, I would wait until you get all the information at day 100 with the collective data"
Hope this makes you feel a bit less apprehensive.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Autologous stem cell transplant failure?
Hello Melissa,
I do share your concerns here, but please don't be discouraged by the results. I generally do not rely on just a single set of monoclonal protein studies to make a decision. It would be best to get the labs repeated (SPEP, serum FLC and 24-hour UPEP) in the next 2 weeks or so and look at the trend. One does not have to necessarily wait until day 100. A marrow biopsy can indeed be performed sooner if disease progression is suspected.
My best wishes are with you.
Prashant
I do share your concerns here, but please don't be discouraged by the results. I generally do not rely on just a single set of monoclonal protein studies to make a decision. It would be best to get the labs repeated (SPEP, serum FLC and 24-hour UPEP) in the next 2 weeks or so and look at the trend. One does not have to necessarily wait until day 100. A marrow biopsy can indeed be performed sooner if disease progression is suspected.
My best wishes are with you.
Prashant
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Autologous stem cell transplant failure?
Thanks everyone for your replies and posts. Here is an update for those interested:
Today I am day 87+. I saw my oncologist this past Tuesday and had blood labs on day 81+. She told me not to consider the transplant a failure as numbers can continue to improve over the next few months and even if they stabilize and stay there that would be a good thing - (I guess a success as far as SCT goes). She said SCT was never meant to be a "cure" as there is no cure for myeloma. She said she would not give any chemo at this time (my bone marrow was slow to engraft because the stroma is compromised from amyloidosis and induction chemo), and that I should stop worrying about numbers, relax and enjoy this drug-free holiday (time without chemo). She said if numbers fall or remain stable, she probably would not do a bone marrow biopsy day 100+.
Again, the message is be patient and wait and give the bone marrow time to recover and repair.
As blood labs came in, the WBC, RBC and platelets showed a positive increase, so engraftment has definitely taken place and no more transfusions were needed day of visit and should not be needed in near future (or ever again - I hope).
Two days within returning home, the SPEP and other labs came in and I was happy to see in three weeks time a monoclonal drop of 3%
from
13% of 940 mg/dl to
10% of 720 mg/dl
Kappa free light chains from 46.3 to 42.2
Okay, so I'm not supposed to worry about numbers, but honestly, when blood labs look better, I feel happier. Optimism kicks in. Just the way it is.
Labs came in from rheumatology, and the rheumatologist said the nerve/muscle pain and neuropathy I am experiencing is from amyloidosis with an increase in neuropathy being a side-effect of the chemo drugs given for myeloma. I do NOT have myositis, polymyalgia rheumatica or any sign of a rheumatic illness. I was told a number of years ago when my symptoms began, I had polymyalgia rheumatica (PMR) and was treated with prednisone for three years. The doc said that was a misdiagnosis. The pain and symptoms I experienced years ago were the amyloidosis and later the myeloma. (Unfortunately, I did not travel to Boston or a university hospital years ago when I probably would have been diagnosed correctly)
My energy level is improving, but my feet, legs, hands, and arms have very bad neuropathy since transplant. I find my joints feel stiff and I have trouble getting up from a chair and moving around. Ugh. Acupuncture provides some relief but not enough. I increased gabapentin but I find I get cranky and feel depressed on it. This happened to me before when I was on it last autumn. Anyone else experience that? I feel like I'm on a round-about with the pain, I'm revisiting meds I've already been on (and quit due to side-effect). Oh well. I was offered a visit to the pain clinic and if things don't improve, I guess I'll take the doc up on it. Is it possible with time the neuropathy will improve? Has anyone had that good fortune?
P.S. I lost my hair in transplant months ago, so I thought it only honest to swap out my profile picture from 2014 to one taken a few days ago. That's what 85+ days post-SCT looks like - at least on me.
Today I am day 87+. I saw my oncologist this past Tuesday and had blood labs on day 81+. She told me not to consider the transplant a failure as numbers can continue to improve over the next few months and even if they stabilize and stay there that would be a good thing - (I guess a success as far as SCT goes). She said SCT was never meant to be a "cure" as there is no cure for myeloma. She said she would not give any chemo at this time (my bone marrow was slow to engraft because the stroma is compromised from amyloidosis and induction chemo), and that I should stop worrying about numbers, relax and enjoy this drug-free holiday (time without chemo). She said if numbers fall or remain stable, she probably would not do a bone marrow biopsy day 100+.
Again, the message is be patient and wait and give the bone marrow time to recover and repair.
As blood labs came in, the WBC, RBC and platelets showed a positive increase, so engraftment has definitely taken place and no more transfusions were needed day of visit and should not be needed in near future (or ever again - I hope).
Two days within returning home, the SPEP and other labs came in and I was happy to see in three weeks time a monoclonal drop of 3%
from
13% of 940 mg/dl to
10% of 720 mg/dl
Kappa free light chains from 46.3 to 42.2
Okay, so I'm not supposed to worry about numbers, but honestly, when blood labs look better, I feel happier. Optimism kicks in. Just the way it is.
Labs came in from rheumatology, and the rheumatologist said the nerve/muscle pain and neuropathy I am experiencing is from amyloidosis with an increase in neuropathy being a side-effect of the chemo drugs given for myeloma. I do NOT have myositis, polymyalgia rheumatica or any sign of a rheumatic illness. I was told a number of years ago when my symptoms began, I had polymyalgia rheumatica (PMR) and was treated with prednisone for three years. The doc said that was a misdiagnosis. The pain and symptoms I experienced years ago were the amyloidosis and later the myeloma. (Unfortunately, I did not travel to Boston or a university hospital years ago when I probably would have been diagnosed correctly)
My energy level is improving, but my feet, legs, hands, and arms have very bad neuropathy since transplant. I find my joints feel stiff and I have trouble getting up from a chair and moving around. Ugh. Acupuncture provides some relief but not enough. I increased gabapentin but I find I get cranky and feel depressed on it. This happened to me before when I was on it last autumn. Anyone else experience that? I feel like I'm on a round-about with the pain, I'm revisiting meds I've already been on (and quit due to side-effect). Oh well. I was offered a visit to the pain clinic and if things don't improve, I guess I'll take the doc up on it. Is it possible with time the neuropathy will improve? Has anyone had that good fortune?
P.S. I lost my hair in transplant months ago, so I thought it only honest to swap out my profile picture from 2014 to one taken a few days ago. That's what 85+ days post-SCT looks like - at least on me.
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Hi Melissa, Thanks for posting your update. Sorry that it seems difficult to get past this transplant time and I hope that improves soon. You look very nice with your new super short hairstyle! I think that 'pain clinics' do help patients with determining how best to manage pain. They have doctors on staff who deal with just that aspect of treatment.
Best of luck with your treatments and please keep us posted here.
Best of luck with your treatments and please keep us posted here.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Autologous stem cell transplant failure?
Hi Melissa,
Thanks for the update. I'm glad that your numbers are looking better!
My myeloma specialist told me to be patient too. In some cases your myeloma-related lab numbers can keep improving for several months after the SCT (beyond Day +100). And that's what happened for me. I was on Revlimid maintenance, but he thinks some of the late improvement was due to delayed effects from the SCT. Like you, I had a very slow engraftment.
I also can relate to your comment about how hard it is not to be concerned about lab numbers, even when we're told not to worry about them. It's just natural to get a little anxious about them. In one of her many insightful columns for the Beacon, Karen Crowley described very well how the "numbers game" is a problem for her too.
Finally, on the post-SCT peripheral neuropathy - mine improved slowly over time after the SCT. So there is hope! It's still an issue for me; I have some numbness in my toes and feet, and sometimes in the tips of some fingers. But it's only an annoyance, not something worse. Here's a link to Forum discussions about dealing with peripheral neuropathy. You've probably seen a lot of these threads, but just in case you haven't ...
Best wishes for things to keep improving for you. Keep us posted.
Mike
Thanks for the update. I'm glad that your numbers are looking better!
My myeloma specialist told me to be patient too. In some cases your myeloma-related lab numbers can keep improving for several months after the SCT (beyond Day +100). And that's what happened for me. I was on Revlimid maintenance, but he thinks some of the late improvement was due to delayed effects from the SCT. Like you, I had a very slow engraftment.
I also can relate to your comment about how hard it is not to be concerned about lab numbers, even when we're told not to worry about them. It's just natural to get a little anxious about them. In one of her many insightful columns for the Beacon, Karen Crowley described very well how the "numbers game" is a problem for her too.
Finally, on the post-SCT peripheral neuropathy - mine improved slowly over time after the SCT. So there is hope! It's still an issue for me; I have some numbness in my toes and feet, and sometimes in the tips of some fingers. But it's only an annoyance, not something worse. Here's a link to Forum discussions about dealing with peripheral neuropathy. You've probably seen a lot of these threads, but just in case you haven't ...
Best wishes for things to keep improving for you. Keep us posted.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Autologous stem cell transplant failure?
Hi Melissa.
I post all my blood numbers on an Excel spreadsheet and analyze to see what helps and what hurts my numbers.
My experience is controversial and maybe I am unique, but I will tell you my experience. I was diagnosed in May 2012 with multiple myeloma and light chain deposition disease (LCDD). I was in bad shape when diagnosed – my beta 2 microglobulin were at 8.5 after 2 1/2 months of dex, thalidomide, Velcade (5.5 qualifies as stage 3 on the International Scale). My kidneys were down to 20% function and my nephrologist gave info to chose which type of dialysis I wanted when my kidneys failed (I cried through the entire presentation). I got scheduled for my SCT. After 5 1/2 months, my kappa free light chains were down to around 35 but in 3 weeks prepping for SCT, they bounced back up to 405.
I had no remission. 2 1/2 months after SCT I was put on 5 mg Revlimid every other day. Within a couple of months they increased it to 10 mg eod. Then I got C, diff for 5 months. I was afraid I was going to die of C. diff and I started doing research on Pubmed. I was a good student in school and have a BS in biology, so I read research and found probiotics that are used in Canada to help fight C. diff.
At 1 year from SCT they did another beta2 microglobulin test and it was over 4, which showed my prognosis for overall survival was 12 months. I asked my onocologist if there were anything I could do to help and he said keep my blood glucose low and steady. I got a very low carb diet book and started following it - and again did research on Pubmed. I gradually developed a ketogenic diet, 83% fat, 12% protein, 5% carbs, I take berberine in the middle of the day, Curcumin and resveratrol in morning and take vitamins. My kappa free light chains are slightly above normal, my kidneys are up to 46% function, and creatinine is normal for first time since before spring 2010.
I post all my blood numbers on an Excel spreadsheet and analyze to see what helps and what hurts my numbers.
My experience is controversial and maybe I am unique, but I will tell you my experience. I was diagnosed in May 2012 with multiple myeloma and light chain deposition disease (LCDD). I was in bad shape when diagnosed – my beta 2 microglobulin were at 8.5 after 2 1/2 months of dex, thalidomide, Velcade (5.5 qualifies as stage 3 on the International Scale). My kidneys were down to 20% function and my nephrologist gave info to chose which type of dialysis I wanted when my kidneys failed (I cried through the entire presentation). I got scheduled for my SCT. After 5 1/2 months, my kappa free light chains were down to around 35 but in 3 weeks prepping for SCT, they bounced back up to 405.
I had no remission. 2 1/2 months after SCT I was put on 5 mg Revlimid every other day. Within a couple of months they increased it to 10 mg eod. Then I got C, diff for 5 months. I was afraid I was going to die of C. diff and I started doing research on Pubmed. I was a good student in school and have a BS in biology, so I read research and found probiotics that are used in Canada to help fight C. diff.
At 1 year from SCT they did another beta2 microglobulin test and it was over 4, which showed my prognosis for overall survival was 12 months. I asked my onocologist if there were anything I could do to help and he said keep my blood glucose low and steady. I got a very low carb diet book and started following it - and again did research on Pubmed. I gradually developed a ketogenic diet, 83% fat, 12% protein, 5% carbs, I take berberine in the middle of the day, Curcumin and resveratrol in morning and take vitamins. My kappa free light chains are slightly above normal, my kidneys are up to 46% function, and creatinine is normal for first time since before spring 2010.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Autologous stem cell transplant failure?
How is the Neupogen being administered? I have used it for a transplant also. My visiting nurse had demonstrated to me how to give the shot in my upper thigh. At the hospital, the nurses suggested changing it to the abdomen. I was very surprised how much more I was able to tolerate the shots in the abdomen. My nurse explained that the fat cells absorbed the drug and helped it to be distributed, but the fat cells assistance made a big difference in the comfort level. Hope this is helpful to someone out there!
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Marcia - Name: Marcia K
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2010
- Age at diagnosis: 55
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