Hello,
My name is Jennifer and I am 45 years old. I was diagnosed with multiple myeloma in January 2016. I have no negative genetic factors and am considered "low risk". I have 2 small lytic lesions on my skull with no other CRAB symptoms. I am on Velcade, dex and Revlimid and appear to be achieving good results. I tolerate the medications fairly well, although we did have to reduce the Revlimid due 15 mg due to rash.
Beginning Labs:
IgG - 6223
Albumin/Globulin Ratio: 0.6
Lambda Serum: 116.9
Kappa/Lambda LC free w/Ratio, serum: 0.03
Beta 2 Microglobulin: 3.26
Current Labs:
IgG - 1660
Albumin/Globulin Ratio: 1.1
Lambda Serum: 34.4
Kappa/Lambda LC free w/Ratio, serum: 0.24
Beta 2 Microglobulin: 1.88
The time is quickly coming to decide whether or not to proceed with transplant. My oncologist is not necessarily encouraging me to have or not have the transplant. He said he prefers his patients to have consultation with the transplant doctors and then decide which path to take.
I had the consultation and was surprised to hear the transplant doctor say that, on average, patients only go about two and a half years before relapse. Considering a good 6 months of that time would be spent recovering from the transplant, I was hoping for a bit more than 2.5 years.
I suppose my alternative is staying on a maintenance therapy until such time that medical advances find a better alternative ... or when 2.5 years sounds like a good deal.
I would like to hear from people who have chosen to delay their transplant and have continued on maintenance therapy. How long have you been on maintenance? Are you happy with your decision? Have you had to periodically change your medications to keep your myeloma in check? Did you eventually decide to get a transplant? What led to that decision?
I appreciate anyone who can share their experience and insight with me!
Jen
Forums
Re: Pros and cons of delaying stem cell transplant
Hi Jendunk,
"Considering a good 6 months of that time would be spent recovering from the transplant, I was hoping for a bit more than 2.5 years."
Actually 2 months is what the studies show the recovery time is for most patients. Is there a reason you think your recovery will take so much longer?
"Patients recovered fairly quickly after transplantation; as early as the second month, nearly all values on the scales had returned to the baseline values. Role and social functions were affected more before and during the transplant than other functions. Ratings of the overall QoL followed the same pattern as the other items, returned to the baseline value at month 2 and then remained stable. The same pattern of initial deterioration and rather rapid recovery was also seen when multiple myeloma and lymphoma patients were analyzed separately, although there were some significant differences between the groups at week 2. The results confirm the clinical picture of how these patients felt and perceived their situation and add to the findings from other studies in this area."
Source:
U Frödin et al, "A prospective evaluation of patients' health-related quality of life during auto-SCT: a 3-year follow-up," Bone Marrow Transplantation, 2011 (full text of article)
Mark
"Considering a good 6 months of that time would be spent recovering from the transplant, I was hoping for a bit more than 2.5 years."
Actually 2 months is what the studies show the recovery time is for most patients. Is there a reason you think your recovery will take so much longer?
"Patients recovered fairly quickly after transplantation; as early as the second month, nearly all values on the scales had returned to the baseline values. Role and social functions were affected more before and during the transplant than other functions. Ratings of the overall QoL followed the same pattern as the other items, returned to the baseline value at month 2 and then remained stable. The same pattern of initial deterioration and rather rapid recovery was also seen when multiple myeloma and lymphoma patients were analyzed separately, although there were some significant differences between the groups at week 2. The results confirm the clinical picture of how these patients felt and perceived their situation and add to the findings from other studies in this area."
Source:
U Frödin et al, "A prospective evaluation of patients' health-related quality of life during auto-SCT: a 3-year follow-up," Bone Marrow Transplantation, 2011 (full text of article)
Mark
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Mark11
Re: Pros and cons of delaying stem cell transplant
Hi Mark,
Thanks for your reply. I have heard of some patients reporting shorter recovery times, and others that report longer. Admittedly, I was not quoting any journal statistics. Thank you for clarifying that.
Still, my main question remains the same. How are patients faring who have chosen maintenance therapy over immediate transplant? What are the cons of waiting?
Thanks again for your response.
Jen
Thanks for your reply. I have heard of some patients reporting shorter recovery times, and others that report longer. Admittedly, I was not quoting any journal statistics. Thank you for clarifying that.
Still, my main question remains the same. How are patients faring who have chosen maintenance therapy over immediate transplant? What are the cons of waiting?
Thanks again for your response.
Jen
Re: Pros and cons of delaying stem cell transplant
Hi Jendunk,
This is a topic that is often discussed on this forum.
This thread includes some good links on the topic, as well as additional search tips from Cheryl.
https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html
I really found reading through all these threads to be very helpful.
This is a topic that is often discussed on this forum.
This thread includes some good links on the topic, as well as additional search tips from Cheryl.
https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html
I really found reading through all these threads to be very helpful.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Pros and cons of delaying stem cell transplant
Hi Jendunk,
I am in the minority that went the early transplant route and have never used maintenance, so I am definitely not who you are looking to answer your question. My read of the quality of life studies suggests that the main drawback to continuous maintenance therapy is the reduced quality of life that comes from being on drugs that are immune / myelosuppressive over the long term and that a patients best QOL is during the first treatment-free interval.
"Patients enjoy better HRQL when in their first TFI, and the length of the TFI also positively impacts on HRQL This information may be important for patients and their physicians making treatment decisions and has implications for treatment protocols incorporating extended therapy."
http://link.springer.com/article/10.1007%2Fs00520-012-1548-y
I have a whole thread with QOL links in it.
https://myelomabeacon.org/forum/quality-of-life-t6442.html
I have been rewarded with excellent quality of life by going with what the studies show and what common sense told me - that being off drugs and in remission from your disease leads to the best QOL.
Mark
I am in the minority that went the early transplant route and have never used maintenance, so I am definitely not who you are looking to answer your question. My read of the quality of life studies suggests that the main drawback to continuous maintenance therapy is the reduced quality of life that comes from being on drugs that are immune / myelosuppressive over the long term and that a patients best QOL is during the first treatment-free interval.
"Patients enjoy better HRQL when in their first TFI, and the length of the TFI also positively impacts on HRQL This information may be important for patients and their physicians making treatment decisions and has implications for treatment protocols incorporating extended therapy."
http://link.springer.com/article/10.1007%2Fs00520-012-1548-y
I have a whole thread with QOL links in it.
https://myelomabeacon.org/forum/quality-of-life-t6442.html
I have been rewarded with excellent quality of life by going with what the studies show and what common sense told me - that being off drugs and in remission from your disease leads to the best QOL.
Mark
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Mark11
Re: Pros and cons of delaying stem cell transplant
Hi Jendunk
I decided against having a stem cell transplant in favor of treatment with novel agents and chemotherapy. I am very far from being very knowledgable about myeloma -- there are far better informed folks on this forum. But, for what it's worth, I want to share my own case with you with the hope that it may provide some help.
I was diagnosed about 13 months ago, with advanced Stage III disease, measured by both Durie-Salmon and International staging criteria. My diagnosis was kappa free light chain myeloma. My bone marrow biopsy showed a cancerous plasma cell level of 90%, and I had free myeloma cells circulating in my blood, along with a very large number of lytic lesions and three vertebral fractures. I also had two genetic abnormalities (as measured by FISH) with bad prognostic consequences.
My initial treatment consisted of Revlimid (lenalidomide) and dexamethasone. I responded to that for about two months, with my response measured by the free light chain blood serum test. After two months, my light chain numbers began increasing again, so I was switched to Velcade (bortezomib) and dexamethasone. This combination did not work at all.
However, my latest treatment -- Cytoxan (cyclophosphamide), Kyprolis (carfilzomib), and dexamethasone -- has brought my free light chain numbers down to within the normal range, so that I am now officially enjoying a complete response.
I am now on just Kyprolis maintenance -- no more Cytoxan, which is an old chemotherapy agent. As for your question about needing to switch drugs, my oncologist has warned me that it is likely only a matter of time before Kyprolis stops working for me. Fortunately, there are now many drugs and drug combinations to try when that happens. Unfortunately, there is no guarantee that any one of them will work when the time comes. And every time you do suffer a relapse during treatment, your myeloma tends to become more resistant to further treatment.
I decided not to do the transplant because I was frankly afraid of the possible complications, and my feeling was that the transplant would be harder on my body. However, I have to point out that these feelings are not based on hard scientific evidence.
I also need to mention that I am much older than you (66 now, and 65 at diagnosis), and I also have a serious heart condition. These factors do raise the possibility of complications from a transplant, but also raise the possibility of bad side effects from some novel agents and chemotherapy.
I am happy with my decision, but I can hardly claim that it was the "right" decision in any objective sense. The truth is that -- as I think you will find by reading the thread suggested by Multibilly -- there is no scientific way to predict which treatment course -- autologous stem cell transplant or treatment with novel agents/chemotherapy alone -- will give the best results in any given patient. The best you can do is get one or more opinions from myeloma experts (oncologists/hematologists who specialize in treating multiple myeloma), read or talk to others about their experiences, and then make your own decision. I would recommend opinions from at least two myeloma experts, and talking to (or reading about) at least twenty patients faced with the same decision.
I also want to reinforce what Mark11 said: Two months is closer to the mean recovery time from transplant than is six months, which is on the outside of the range. Also, there are many, many people who have had remissions that have lasted far longer than two and one half years.
One thing you can also consider is having your stem cells extracted now, and then frozen and stored for a future transplant, even if you decide to forego one now. That will give you the maximum flexibility to revisit your decision down the road. Doing the extraction and storing the frozen stem cells will allow your doctors to treat you aggressively with drugs, some of which are known to damage stem cells.
Deciding on whether or not to have a transplant is one of the most difficult decisions you will make as a myeloma patient. The good news is that there is a lot of information out there, even if it does fall short of leaving you with definitive criteria for deciding. And the great news is that you have been diagnosed early, with what sounds like very little damage to your body, and you are young. So, whatever your decision, the odds are in your favor!
Good luck and make sure you have a recognized myeloma expert treating you.
I decided against having a stem cell transplant in favor of treatment with novel agents and chemotherapy. I am very far from being very knowledgable about myeloma -- there are far better informed folks on this forum. But, for what it's worth, I want to share my own case with you with the hope that it may provide some help.
I was diagnosed about 13 months ago, with advanced Stage III disease, measured by both Durie-Salmon and International staging criteria. My diagnosis was kappa free light chain myeloma. My bone marrow biopsy showed a cancerous plasma cell level of 90%, and I had free myeloma cells circulating in my blood, along with a very large number of lytic lesions and three vertebral fractures. I also had two genetic abnormalities (as measured by FISH) with bad prognostic consequences.
My initial treatment consisted of Revlimid (lenalidomide) and dexamethasone. I responded to that for about two months, with my response measured by the free light chain blood serum test. After two months, my light chain numbers began increasing again, so I was switched to Velcade (bortezomib) and dexamethasone. This combination did not work at all.
However, my latest treatment -- Cytoxan (cyclophosphamide), Kyprolis (carfilzomib), and dexamethasone -- has brought my free light chain numbers down to within the normal range, so that I am now officially enjoying a complete response.
I am now on just Kyprolis maintenance -- no more Cytoxan, which is an old chemotherapy agent. As for your question about needing to switch drugs, my oncologist has warned me that it is likely only a matter of time before Kyprolis stops working for me. Fortunately, there are now many drugs and drug combinations to try when that happens. Unfortunately, there is no guarantee that any one of them will work when the time comes. And every time you do suffer a relapse during treatment, your myeloma tends to become more resistant to further treatment.
I decided not to do the transplant because I was frankly afraid of the possible complications, and my feeling was that the transplant would be harder on my body. However, I have to point out that these feelings are not based on hard scientific evidence.
I also need to mention that I am much older than you (66 now, and 65 at diagnosis), and I also have a serious heart condition. These factors do raise the possibility of complications from a transplant, but also raise the possibility of bad side effects from some novel agents and chemotherapy.
I am happy with my decision, but I can hardly claim that it was the "right" decision in any objective sense. The truth is that -- as I think you will find by reading the thread suggested by Multibilly -- there is no scientific way to predict which treatment course -- autologous stem cell transplant or treatment with novel agents/chemotherapy alone -- will give the best results in any given patient. The best you can do is get one or more opinions from myeloma experts (oncologists/hematologists who specialize in treating multiple myeloma), read or talk to others about their experiences, and then make your own decision. I would recommend opinions from at least two myeloma experts, and talking to (or reading about) at least twenty patients faced with the same decision.
I also want to reinforce what Mark11 said: Two months is closer to the mean recovery time from transplant than is six months, which is on the outside of the range. Also, there are many, many people who have had remissions that have lasted far longer than two and one half years.
One thing you can also consider is having your stem cells extracted now, and then frozen and stored for a future transplant, even if you decide to forego one now. That will give you the maximum flexibility to revisit your decision down the road. Doing the extraction and storing the frozen stem cells will allow your doctors to treat you aggressively with drugs, some of which are known to damage stem cells.
Deciding on whether or not to have a transplant is one of the most difficult decisions you will make as a myeloma patient. The good news is that there is a lot of information out there, even if it does fall short of leaving you with definitive criteria for deciding. And the great news is that you have been diagnosed early, with what sounds like very little damage to your body, and you are young. So, whatever your decision, the odds are in your favor!
Good luck and make sure you have a recognized myeloma expert treating you.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Pros and cons of delaying stem cell transplant
Dear Mr. PH,
Thank you so much for your post. You make excellent points.
I was under the belief that I could harvest my stem cells and then bank them for future use; however, the transplant doctor said that insurance won't approve the transplant unless I use one set of stem cells right away. (I have an HMO)
The case worker from Cedar Sinai will be calling in a week or so, and I will ask them if they can verify if this is true or not.
Thank you for sharing your experience, it really helps to talk to someone who has been through this mental and physical aspects of this cancer.
Good Luck to you, Mr. PH.
JenDunk
Thank you so much for your post. You make excellent points.
I was under the belief that I could harvest my stem cells and then bank them for future use; however, the transplant doctor said that insurance won't approve the transplant unless I use one set of stem cells right away. (I have an HMO)
The case worker from Cedar Sinai will be calling in a week or so, and I will ask them if they can verify if this is true or not.
Thank you for sharing your experience, it really helps to talk to someone who has been through this mental and physical aspects of this cancer.
Good Luck to you, Mr. PH.
JenDunk
Re: Pros and cons of delaying stem cell transplant
Hello Jen:
Needless to say, a heavy decision for a person faced with it. My wife was hoping not to have to undergo the ASCT, but she had a high MSpike and the t4,14 translocation, and so she decided to undergo the procedure. We got very close to CR, but not quite there. So here are a couple of considerations for you.
There are two studies that posted updated results last year. There was a SWOG study on continuous maintenance versus only lesser maintenance after ASCT and induction. That study posted something like a 50 month interval until first relapse under continuous maintenance, I believe the other arm (reduced maintenance or no maintenance) was like 36 months. Big difference. The other study was the IFM-Dana Farber study on early vs delayed ASCT. That study had some similar arms and posted similar data for PFS for ASCT on continuous maintenance. The early ASCT arm had much better PFS, and in the last update, did show a slight but statistically significant benefit in overall survival.
One thing that persons naturally would not want to think about or discuss (but should when facing the decision) is that the ASCT, in addition to the side effects, does have an early mortality due to the procedure itself. In the IFM study, you can see that its something like 1%. Small, yes, but a consideration. I would venture that if you are in the US at a major center, the odds are a little better, maybe 0.5% to 0.75%.
Also, keep in mind that the working hypothesis of the IFM study (early vs late ASCT) was that the ASCT still was the standard of care, and should be done in most cases, but could potentially be delayed. The old thinking was that for later relapses, that the ASCT was not effective, and to get the benefit of it, it would have to be done relatively early in the disease course. The final thought/consideration is that when you look at the study results, the data looks actually pretty good for the so called standard of care under novel agents, ASCT, consolidation, and maintenance, compared to a few years ago. If you get a good response (say an average response) then going forward, there are actually better agents (Kyprolis and the Mabs) already approved, and newer agents in the pipeline, that should be available to work into the mix to manage your multiple myeloma.
I am trying to give you some considerations, but not argue one way or the other, however, I will say that my non-medical opinion is that being low risk and in CR (check for MRD negativity also) that certainly does sound like the delayed ASCT strategy would potentially be a match. Good luck.
Needless to say, a heavy decision for a person faced with it. My wife was hoping not to have to undergo the ASCT, but she had a high MSpike and the t4,14 translocation, and so she decided to undergo the procedure. We got very close to CR, but not quite there. So here are a couple of considerations for you.
There are two studies that posted updated results last year. There was a SWOG study on continuous maintenance versus only lesser maintenance after ASCT and induction. That study posted something like a 50 month interval until first relapse under continuous maintenance, I believe the other arm (reduced maintenance or no maintenance) was like 36 months. Big difference. The other study was the IFM-Dana Farber study on early vs delayed ASCT. That study had some similar arms and posted similar data for PFS for ASCT on continuous maintenance. The early ASCT arm had much better PFS, and in the last update, did show a slight but statistically significant benefit in overall survival.
One thing that persons naturally would not want to think about or discuss (but should when facing the decision) is that the ASCT, in addition to the side effects, does have an early mortality due to the procedure itself. In the IFM study, you can see that its something like 1%. Small, yes, but a consideration. I would venture that if you are in the US at a major center, the odds are a little better, maybe 0.5% to 0.75%.
Also, keep in mind that the working hypothesis of the IFM study (early vs late ASCT) was that the ASCT still was the standard of care, and should be done in most cases, but could potentially be delayed. The old thinking was that for later relapses, that the ASCT was not effective, and to get the benefit of it, it would have to be done relatively early in the disease course. The final thought/consideration is that when you look at the study results, the data looks actually pretty good for the so called standard of care under novel agents, ASCT, consolidation, and maintenance, compared to a few years ago. If you get a good response (say an average response) then going forward, there are actually better agents (Kyprolis and the Mabs) already approved, and newer agents in the pipeline, that should be available to work into the mix to manage your multiple myeloma.
I am trying to give you some considerations, but not argue one way or the other, however, I will say that my non-medical opinion is that being low risk and in CR (check for MRD negativity also) that certainly does sound like the delayed ASCT strategy would potentially be a match. Good luck.
-
JPC - Name: JPC
Re: Pros and cons of delaying stem cell transplant
Dear Jen, PH , JPC and all of you:
I am in my twelfth cycle of Revlimid 25 mg, dex reduced to 20 mg per week in the second cycle and further reduced to 16 mg from the ninth cycle. I am currently in a very good partial response (VGPR).
I am IgG kappa multiple myeloma.
I agreed for stem cell harvest and freezing. It was done after the fifth cycle. I am not inclined to do a transplant. I was briefed at the hospital that death during the process is two percent. JPC mentions one percent. Also recovery time average and side effects explained to me were a difficult route to go through. The stem cell harvest procedure and side effects were painful.
I have chosen to be treated by chemo and hope that newer medicine will come up which will be easier on my system and will let me live fullest as long as I live rather than going through a transplant.
It is a very personal decision. One has to do so after searching their inner soul and consulting their physician - a myeloma expert.
I am in my twelfth cycle of Revlimid 25 mg, dex reduced to 20 mg per week in the second cycle and further reduced to 16 mg from the ninth cycle. I am currently in a very good partial response (VGPR).
I am IgG kappa multiple myeloma.
I agreed for stem cell harvest and freezing. It was done after the fifth cycle. I am not inclined to do a transplant. I was briefed at the hospital that death during the process is two percent. JPC mentions one percent. Also recovery time average and side effects explained to me were a difficult route to go through. The stem cell harvest procedure and side effects were painful.
I have chosen to be treated by chemo and hope that newer medicine will come up which will be easier on my system and will let me live fullest as long as I live rather than going through a transplant.
It is a very personal decision. One has to do so after searching their inner soul and consulting their physician - a myeloma expert.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Pros and cons of delaying stem cell transplant
Dear JPC and MMFeb,
Thank you for your replies. Multiple myeloma really customizes itself to its host so that no two patients are exactly alike. Of course, this raises the level of difficulty in trying to compare and contrast our experiences. It seems the only universal truth about this cancer is the mental anguish it causes all of us in trying to pinpoint our current health, wondering how in the world we got here, and determining next steps.
MMFeb, like you, I put a lot of hope and faith in the new therapies being developed that will, hopefully, turn this cancer into a chronic disease instead of an "incurable, yet highly treatable" cancer. This is a significant factor that is making me contemplate delaying the stem cell transplant for as long possible.
JPC, I also take into consideration my relatively young age and lack of any organ damage or broken bones. I am so grateful to have caught this early and remind myself how lucky I am when I start feeling sorry for myself. Shamefully, I must admit, this is several times a day. Almost everyone has a more difficult battle than the one I currently have, and you all are so brave! It has been hard for me to become accustomed to the constant awareness that the cancer is there and even when I'm in remission, it will still be in there, somewhere. Maybe that's why I am having a hard time with the thought of a stem cell transplant. I feel fine. Or, at least, I felt fine before I was told I had cancer! The only discomforts I have now are side effects of the treatment. Somewhere in my brain, I envision that a person going into an autologous stem cell transplant is already in pretty bad condition and will feel better for having had the procedure. My goal would be to get back to feeling as relatively good as I did pre-transplant. Does that make sense? Hmmm, perhaps we have stumbled upon one the faults in my reasoning! (Myeloma veterans and newbies alike should feel free to comment on that!)
The transplant coordinator from Cedar Sinai called today. She is sending me more information on the transplant process. She encouraged me to talk to my doctor about going a few more rounds of my current treatment to get into as deep of a remission as possible and then consider having transplant at end of summer. I have full labs scheduled for next week including the serum protein electrophoresis. I see my doctor next Thursday and I believe he is going to refer me for another bone marrow biopsy.
Thank you all for listening to me. Writing does ease some of my anxiety and helps to unscramble the thoughts that run through my mind.
Until our paths cross again,
Jen
Thank you for your replies. Multiple myeloma really customizes itself to its host so that no two patients are exactly alike. Of course, this raises the level of difficulty in trying to compare and contrast our experiences. It seems the only universal truth about this cancer is the mental anguish it causes all of us in trying to pinpoint our current health, wondering how in the world we got here, and determining next steps.
MMFeb, like you, I put a lot of hope and faith in the new therapies being developed that will, hopefully, turn this cancer into a chronic disease instead of an "incurable, yet highly treatable" cancer. This is a significant factor that is making me contemplate delaying the stem cell transplant for as long possible.
JPC, I also take into consideration my relatively young age and lack of any organ damage or broken bones. I am so grateful to have caught this early and remind myself how lucky I am when I start feeling sorry for myself. Shamefully, I must admit, this is several times a day. Almost everyone has a more difficult battle than the one I currently have, and you all are so brave! It has been hard for me to become accustomed to the constant awareness that the cancer is there and even when I'm in remission, it will still be in there, somewhere. Maybe that's why I am having a hard time with the thought of a stem cell transplant. I feel fine. Or, at least, I felt fine before I was told I had cancer! The only discomforts I have now are side effects of the treatment. Somewhere in my brain, I envision that a person going into an autologous stem cell transplant is already in pretty bad condition and will feel better for having had the procedure. My goal would be to get back to feeling as relatively good as I did pre-transplant. Does that make sense? Hmmm, perhaps we have stumbled upon one the faults in my reasoning! (Myeloma veterans and newbies alike should feel free to comment on that!)
The transplant coordinator from Cedar Sinai called today. She is sending me more information on the transplant process. She encouraged me to talk to my doctor about going a few more rounds of my current treatment to get into as deep of a remission as possible and then consider having transplant at end of summer. I have full labs scheduled for next week including the serum protein electrophoresis. I see my doctor next Thursday and I believe he is going to refer me for another bone marrow biopsy.
Thank you all for listening to me. Writing does ease some of my anxiety and helps to unscramble the thoughts that run through my mind.
Until our paths cross again,
Jen
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