This article might be of interest in view of the question I recently posed- as this group tries to answer the question regarding what is known about long term survivors of multiple myeloma.
C João et al,"Long-term survival in multiple myeloma," Clinical Case Reports, Oct 2014 (full text of article)
What is of particular interest is only 1 of the 4 cases underwent a transplant and three are said to have had had no abnormalities on FISH. Not everyone has been on continuous treatment or in CR, but stable disease was part of the outcome sought.
It does look, as I thought, that the quality of ongoing care including supportive care and intervening to change treatments fast when indicated, whilst aiming for quality of life, is part of the picture in addition..
Most of us get, in my experience, good / excellent care at the myeloma specialist centres, but there is often a conveyor belt approach to treatment because of the lack of consensus in treatment of multiple myeloma with rare use of very individualised approaches.
Forums
Re: Long-term multiple myeloma survivors - case studies
Thanks for the reference, Edna.
The long-term survival topic page here at The Beacon will take you to a list of several articles the Beacon has published on research related to long-term survival in myeloma patients.
One of the articles references an analysis of long-term survival that was presented as an abstract at the 2013 ASH meeting. You can find it here:
"Long-Term (10 Years or More) Survivors Of Multiple Myeloma: A Population-Based Analysis Of The US National Cancer Data Base," ASH 2013 annual meeting abstract #760.
The long-term survival topic page here at The Beacon will take you to a list of several articles the Beacon has published on research related to long-term survival in myeloma patients.
One of the articles references an analysis of long-term survival that was presented as an abstract at the 2013 ASH meeting. You can find it here:
"Long-Term (10 Years or More) Survivors Of Multiple Myeloma: A Population-Based Analysis Of The US National Cancer Data Base," ASH 2013 annual meeting abstract #760.
Re: Long Term survivors of MM- case studies
Hi Edna,
Great find.
I would point out none of these long term survivors stayed on never ending cycles of drugs until progression.
I actually think that treatment free intervals are key for long term survival to spare the patients from cumulative drug toxicity. In May I will be at 4 years in a drug free remission.
I would also point out that all of the long term survivors used alkylators and made use of drugs that are rarely used here in the US.
My read is that patients number 1 and 3 did early tandem autos.
Thanks again for this article.
Mark
Great find.
I would point out none of these long term survivors stayed on never ending cycles of drugs until progression.
"All enjoyed prolonged treatment-free intervals."
I actually think that treatment free intervals are key for long term survival to spare the patients from cumulative drug toxicity. In May I will be at 4 years in a drug free remission.
I would also point out that all of the long term survivors used alkylators and made use of drugs that are rarely used here in the US.
"Besides treatment options, prolongation of survival is, in some cases (as illustrated in case 1), not simply related to the use of novel drugs but possibly associated to clinical prognostic factors and biological characteristics of the disease."
My read is that patients number 1 and 3 did early tandem autos.
Thanks again for this article.
Mark
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Mark11
Re: Long-term multiple myeloma survivors - case studies
Mark
My point was that not all long-term survivors had transplants and, yes, the treatment regimens are of the 'old school' in multiple myeloma, but the fact that longer survival rates we see now are being attributed to increasing use of novel drugs and HDT/ASCT seems not to give the full picture.
I think you are right, there seems to be a point when coming of drugs even when not in complete remission may be better for us. But the FISH profiles may matter too, More collaborative studies are needed to get to grips with why some people survive longer term, or for some cancers go into spontaneous remission.
My point was that not all long-term survivors had transplants and, yes, the treatment regimens are of the 'old school' in multiple myeloma, but the fact that longer survival rates we see now are being attributed to increasing use of novel drugs and HDT/ASCT seems not to give the full picture.
I think you are right, there seems to be a point when coming of drugs even when not in complete remission may be better for us. But the FISH profiles may matter too, More collaborative studies are needed to get to grips with why some people survive longer term, or for some cancers go into spontaneous remission.
Re: Long-term multiple myeloma survivors - case studies
I think that, when we look at '10 year survivals,' we are coming onto a cusp in time when the newer novel agents will have been used for longer than a decade. It would have to be longer than a decade in order to get the studies done and published.
Where I live in Canada, I think that Velcade was approved in 2008, and Revlimid in 2010. In the US, you have had those drugs for a longer period of time now. To me, having these IMIDS and proteasome inhibitors has been a miracle of sorts. The first IMID was thalidomide, which has been used for longer than a decade. There are long-term survivors who used that, but the side effects of neuropathy are more severe than for Revlimid, as I understand it.
The appearance of proteasome inhibitors such as Velcade may have tipped the balance of long-term survival in a positive direction, or at least I hope so! Also, the use of stem cell transplants, either auto or allo, has undoubtedly helped many patients. One thing about the ASCT, is that you may get into a period of remission when you don't need any drugs for awhile, as i did.
We really are in an interesting time for 'history of myeloma science,' in my opinion!
Where I live in Canada, I think that Velcade was approved in 2008, and Revlimid in 2010. In the US, you have had those drugs for a longer period of time now. To me, having these IMIDS and proteasome inhibitors has been a miracle of sorts. The first IMID was thalidomide, which has been used for longer than a decade. There are long-term survivors who used that, but the side effects of neuropathy are more severe than for Revlimid, as I understand it.
The appearance of proteasome inhibitors such as Velcade may have tipped the balance of long-term survival in a positive direction, or at least I hope so! Also, the use of stem cell transplants, either auto or allo, has undoubtedly helped many patients. One thing about the ASCT, is that you may get into a period of remission when you don't need any drugs for awhile, as i did.
We really are in an interesting time for 'history of myeloma science,' in my opinion!
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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: Long-term multiple myeloma survivors - case studies
Hi Edna,
That was my point. My goal was to get the longest drug-free remission possible. The only novel agent I used was Velcade for 4 cycles. If I thought extensive novel agent use could lead to long-term drug free remission and quality of life on par with the general population, I would have used them more extensively. Most of the therapies I used were "old school" - Doxil (doxorubicin liposomal], high-dose melphalan, high-dose fludarabine, and "old school" immunotherapy (allogeneic transplant). I am a high risk patient, so effective therapies can overcome FISH profiles
The study the Beacon Staff listed shows what factors most long term myeloma survivors have in common. Only one therapy is mentioned.
Mark
... but the fact that longer survival rates we see now are being attributed to increasing use of novel drugs and HDT/ASCT seems not to give the full picture."
That was my point. My goal was to get the longest drug-free remission possible. The only novel agent I used was Velcade for 4 cycles. If I thought extensive novel agent use could lead to long-term drug free remission and quality of life on par with the general population, I would have used them more extensively. Most of the therapies I used were "old school" - Doxil (doxorubicin liposomal], high-dose melphalan, high-dose fludarabine, and "old school" immunotherapy (allogeneic transplant). I am a high risk patient, so effective therapies can overcome FISH profiles
The study the Beacon Staff listed shows what factors most long term myeloma survivors have in common. Only one therapy is mentioned.
Multivariable analyses showed that younger age, non-Black race, lower educational level, non-Medicare/Medicaid primary payor, treatment at academic centers, and receipt of ASCT as part of initial treatment were significant independent predictors of survival > 10 years."
Mark
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Mark11
Re: Long-term multiple myeloma survivors - case studies
Mark
I do not feel one can easily extrapolate these case studies, they are case studies and illustrative.
One cannot ignore other studies, such as at UAMs / Barlogie, whose treatments appear to give long remissions, yet even here it is acknowledged the longer survival obtained does not apply to all subgroups of patients with multiple myeloma treated with Total Therapy regimens.
I found the Italian case study interesting in that it was not only those who had transplants that were long survivors. But also the treatments did make people ill too, even if they had drug free periods. They patients clearly had the relevant medical discipline inputs to help their significant health problems, and this always helps survival in any disease.
Edna
I do not feel one can easily extrapolate these case studies, they are case studies and illustrative.
One cannot ignore other studies, such as at UAMs / Barlogie, whose treatments appear to give long remissions, yet even here it is acknowledged the longer survival obtained does not apply to all subgroups of patients with multiple myeloma treated with Total Therapy regimens.
I found the Italian case study interesting in that it was not only those who had transplants that were long survivors. But also the treatments did make people ill too, even if they had drug free periods. They patients clearly had the relevant medical discipline inputs to help their significant health problems, and this always helps survival in any disease.
Edna
Re: Long-term multiple myeloma survivors - case studies
Hi Edna and Mark,
This is an interesting thread, although I find some of the criteria used to separate different patient groups a bit odd sometimes, e.g., 'non-black', or 'lower educational level'. Really? In this day and age, I thought we were getting beyond categorizing people in this way!!
Anyways, I think the topic was 'long-term survival', as compared to to 'long-term survival with zero side effects,' as you have been fortunate to have, Mark. I think that many long-term survivors have probably been through a variety of treatments. The very fact that there are newer developments, such as antibody treatments, HDAC treatments, and more would indicate that many patients are trying to find a new way of treating the myeloma. And it is possible that some of the new treatments are quite tolerable.
I just was trying to say that we don't know yet how long survival will be with the newer novel agents. Of course, we are all hoping that these new drugs will help us out a lot that way. Many people will have auto or allo transplants, but not all, so it would be nice to think that there are good alternatives to that.
I will get off of my soapbox now!
This is an interesting thread, although I find some of the criteria used to separate different patient groups a bit odd sometimes, e.g., 'non-black', or 'lower educational level'. Really? In this day and age, I thought we were getting beyond categorizing people in this way!!
Anyways, I think the topic was 'long-term survival', as compared to to 'long-term survival with zero side effects,' as you have been fortunate to have, Mark. I think that many long-term survivors have probably been through a variety of treatments. The very fact that there are newer developments, such as antibody treatments, HDAC treatments, and more would indicate that many patients are trying to find a new way of treating the myeloma. And it is possible that some of the new treatments are quite tolerable.
I just was trying to say that we don't know yet how long survival will be with the newer novel agents. Of course, we are all hoping that these new drugs will help us out a lot that way. Many people will have auto or allo transplants, but not all, so it would be nice to think that there are good alternatives to that.
I will get off of my soapbox now!
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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: Long-term multiple myeloma survivors - case studies
I agree with Nancy. Odd criteria, indeed.
I am wondering if anybody has seen any studies using the risk factors (like the MSmart classifications) or the cytogenetics as the criteria for these studies?
I think those factors ought to play a major role in the outcome since they have a lot to do with making a decision like ASCT or not.
K_Shash
I am wondering if anybody has seen any studies using the risk factors (like the MSmart classifications) or the cytogenetics as the criteria for these studies?
I think those factors ought to play a major role in the outcome since they have a lot to do with making a decision like ASCT or not.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Long-term multiple myeloma survivors - case studies
Hi Edna,
Thanks again for starting this thread. A lot of people are reading and I think it is a very informative thread.
"One cannot ignore other studies, such as at UAMs / Barlogie, whose treatments appear to give long remissions, yet even here it is acknowledged the longer survival obtained does not apply to all subgroups of patients with multiple myeloma treated with Total Therapy regimens."
I happen to be one of the patients that tend to have a poor outcome with a Total Therapy type treatment plans. That is why I made a decision to rely on immunotherapy as opposed to a therapy that relies exclusively on drugs. I also am a big believer in immunotherapy. That makes me feel confident that I made an excellent therapy choice for myself. Many standard risk believe Total Therapy is a cure for them and that they will stay in remission for long periods. Those patients made great therapy choices for themselves. Each patient/doctor has to come up with a therapy that can be successful for that individual patient. If you have an excellent doctor and an educated patient any myeloma patient can have a great outcome - even high risk patients like me!
Mark
Thanks again for starting this thread. A lot of people are reading and I think it is a very informative thread.
"One cannot ignore other studies, such as at UAMs / Barlogie, whose treatments appear to give long remissions, yet even here it is acknowledged the longer survival obtained does not apply to all subgroups of patients with multiple myeloma treated with Total Therapy regimens."
I happen to be one of the patients that tend to have a poor outcome with a Total Therapy type treatment plans. That is why I made a decision to rely on immunotherapy as opposed to a therapy that relies exclusively on drugs. I also am a big believer in immunotherapy. That makes me feel confident that I made an excellent therapy choice for myself. Many standard risk believe Total Therapy is a cure for them and that they will stay in remission for long periods. Those patients made great therapy choices for themselves. Each patient/doctor has to come up with a therapy that can be successful for that individual patient. If you have an excellent doctor and an educated patient any myeloma patient can have a great outcome - even high risk patients like me!
Mark
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Mark11
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