I found the article mentioned in this thread to be very interesting and relevant to the discussion here:
https://myelomabeacon.org/forum/article-about-early-vs-delayed-sct-t5600.html
The article discusses the pros and cons of ASCT for multiple myeloma.
So far, with the exception of Dr. James Berenson in Los Angeles, most multiple myeloma treatment centers favor ASCT as representing the preferred treatment approach. And yet there is still an ongoing debate on this premise.
I found the article useful as I continue to figure out whether or not to go the ASCT route versus drug therapy alone, and thought others might find it interesting.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Mr. Potatohead, The article IS very interesting. I just want to add to your comment. It is not Dr. Berenson alone who does not believe in the ASCT treatment approach (although most doctors, as you noted, do favor it). I believe that at Johns Hopkins, too, the attitude is that ASCTs are good as part of clinical trials, but if one is not participating in such a trial, a stem cell transplant is not encouraged. In my own case t(4;14), once I declined to join in a proposed trial, I was definitely discouraged from going forward with a transplant. The thinking on this issue at Hopkins may be more flexible than Dr. Berenson's position in that I am pretty sure that if a patient really wanted a transplant, they would oblige.
Re: Autologous transplant for refractory / high risk myeloma
Mr PH and mrozdav
Induction Treatment followed by autologous stem cell transplant has for decades in specialist myeloma institutions been the standard of care for most myeloma patients whose level of fitness / age allow. Few myeloma doctors would not offer this route to patients as a routine, especially younger patients.
The doctors cannot predict success with ASCT or length of remission. I have heard them say that patients they did not expect to do well did so and vice versa. An approach is offered with no guarantees because they themselves do not know whether a treatment will work for an individual patient. They use the clinical research information available to them and the treatments that regulatory and health funding bodies allow them to treat us. But in myeloma the picture of what works and for whom is far from clear and evolving.
The average length of remission with ASCT is around 18 months - 2 years. For some the harshness of ASCT means the time taken to recover means they might feel they do not get a long time with quality of life expected, so this might determine their choice.
It remains unclear as to whether length of re-mission from ASCT is related to depth of response to induction, clonal profile of the abnormal plasma calls or the cytogenetics profile of patients or a complex a mix of all of these.
There are great variations in response to ASCT and length of remission / progression free disease status after an ASCT which are not well explained by the term 'every one is individual'. Science is about hypothesis and ability to explain cogently. The science behind the success or failure of differing treatment approaches in patients is still a work in progress as far as I am concerned. The current hope is that gene expression profiling will give some answers that can improve individual responses to treatment.
I think that is why it is really up to us as patients to gather information, ask questions and then make the decision relevant to our lives, until a cure is available to us.
Best of Luck.
Edna
Induction Treatment followed by autologous stem cell transplant has for decades in specialist myeloma institutions been the standard of care for most myeloma patients whose level of fitness / age allow. Few myeloma doctors would not offer this route to patients as a routine, especially younger patients.
The doctors cannot predict success with ASCT or length of remission. I have heard them say that patients they did not expect to do well did so and vice versa. An approach is offered with no guarantees because they themselves do not know whether a treatment will work for an individual patient. They use the clinical research information available to them and the treatments that regulatory and health funding bodies allow them to treat us. But in myeloma the picture of what works and for whom is far from clear and evolving.
The average length of remission with ASCT is around 18 months - 2 years. For some the harshness of ASCT means the time taken to recover means they might feel they do not get a long time with quality of life expected, so this might determine their choice.
It remains unclear as to whether length of re-mission from ASCT is related to depth of response to induction, clonal profile of the abnormal plasma calls or the cytogenetics profile of patients or a complex a mix of all of these.
There are great variations in response to ASCT and length of remission / progression free disease status after an ASCT which are not well explained by the term 'every one is individual'. Science is about hypothesis and ability to explain cogently. The science behind the success or failure of differing treatment approaches in patients is still a work in progress as far as I am concerned. The current hope is that gene expression profiling will give some answers that can improve individual responses to treatment.
I think that is why it is really up to us as patients to gather information, ask questions and then make the decision relevant to our lives, until a cure is available to us.
Best of Luck.
Edna
Re: Autologous transplant for refractory / high risk myeloma
mrozdav
Thanks for the,information about Johns Hopkins. I thought Dr. Berenson was pretty much alone in eschewing ASCT as a preferred treatment. I was actually thinking of consulting with him, as was suggested by a contributor to this forum. I know Dr. Berenson has stated that the chemo used in most ASCT protocols is in some sense "overkill", in that it may do damage to one's body that could foreclose opportunities for treatment in the future, as more new "novel drugs" are approved. But he is not very specific on precisely what he means.
Edna
You summarize the current state of knowledge very well indeed. And you state the challenge succinctly - it is our decision as patients to choose which treatment route to take. It is a daunting challenge for me, that's for sure. Well, I have a few months to continue weighing this. But it's not a debate I look forward to having with myself. And it is not as if getting yet another opinion - a third one in my case - will settle anything definitively.
I would say that eighteen months more survival after a six month difficult recovery from ASCT would not seem to be a worthwhile tradeoff to me. But, again, these are stats on past cases, and no one knows what determines the outliers.
Thanks for the,information about Johns Hopkins. I thought Dr. Berenson was pretty much alone in eschewing ASCT as a preferred treatment. I was actually thinking of consulting with him, as was suggested by a contributor to this forum. I know Dr. Berenson has stated that the chemo used in most ASCT protocols is in some sense "overkill", in that it may do damage to one's body that could foreclose opportunities for treatment in the future, as more new "novel drugs" are approved. But he is not very specific on precisely what he means.
Edna
You summarize the current state of knowledge very well indeed. And you state the challenge succinctly - it is our decision as patients to choose which treatment route to take. It is a daunting challenge for me, that's for sure. Well, I have a few months to continue weighing this. But it's not a debate I look forward to having with myself. And it is not as if getting yet another opinion - a third one in my case - will settle anything definitively.
I would say that eighteen months more survival after a six month difficult recovery from ASCT would not seem to be a worthwhile tradeoff to me. But, again, these are stats on past cases, and no one knows what determines the outliers.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Mr. Potatohead, My doctor at Hopkins told me that I could expect about 12 to 18 months before relapse after a stem cell transplant. Of course, she was not dogmatic about this, fully aware of individual reactions. Indeed, I know of one woman with the t(4;14) mutation who had her ASCT at the Mayo Clinic and managed to go for more than five years (maintenance free to boot!) before relapsing. So, one, indeed, never can tell.
I decided against a transplant for the very reason you suggest: I did not think that having to live through a rough five or six months was worth the probable extra few months I might gain, particularly since I was already at CR, and even with a transplant I would continue with maintenance drugs. Also, there remained a possibility for me to get a transplant later on even though (and this may turn out to be problematic) I did not harvest any stem cells after induction treatment.
Whether to have or not to have a stem cell transplant seems to me to be an impossible decision. I have read a great deal about the pros and cons and still do not know whether my own decision was the right one. I decided that there is no correct answer; I do not know what is correct and neither do my really excellent doctors. We are all in the realm of hopeful guesswork for the time being.
I decided against a transplant for the very reason you suggest: I did not think that having to live through a rough five or six months was worth the probable extra few months I might gain, particularly since I was already at CR, and even with a transplant I would continue with maintenance drugs. Also, there remained a possibility for me to get a transplant later on even though (and this may turn out to be problematic) I did not harvest any stem cells after induction treatment.
Whether to have or not to have a stem cell transplant seems to me to be an impossible decision. I have read a great deal about the pros and cons and still do not know whether my own decision was the right one. I decided that there is no correct answer; I do not know what is correct and neither do my really excellent doctors. We are all in the realm of hopeful guesswork for the time being.
Re: Autologous transplant for refractory / high risk myeloma
I am strongly leaning against the transplant option. I am almost 66 years old, have a bad heart, and one bout of pneumonia as a result of myelosuppression from Revlimid almost killed me. So I think I might fare quite pooriy with a completely wiped out immune system.
Right now I seem to be doing quite well on carfilzomib (Kyprolis) and dexamethasone. In a few weeks, my oncologist will be adding cyclophosphamide. And although carfilzomib works on average for only about 7 months, I can then try other drugs and drug combinations. And so far, I have had minimal side effects and, except for intense bouts of bone pain and fatigue, my quality of life is still reasonably good.
My oncologist believes he can keep me alive on drugs alone for 2-3 years, perhaps longer.
And I just find the uncertain suffering / success equation with a stem cell transplant too problematic.
And then you die anyway. Is it really worth it?
I think I might feel differently if I were younger and had kids.
Right now I seem to be doing quite well on carfilzomib (Kyprolis) and dexamethasone. In a few weeks, my oncologist will be adding cyclophosphamide. And although carfilzomib works on average for only about 7 months, I can then try other drugs and drug combinations. And so far, I have had minimal side effects and, except for intense bouts of bone pain and fatigue, my quality of life is still reasonably good.
My oncologist believes he can keep me alive on drugs alone for 2-3 years, perhaps longer.
And I just find the uncertain suffering / success equation with a stem cell transplant too problematic.
And then you die anyway. Is it really worth it?
I think I might feel differently if I were younger and had kids.
Last edited by MrPotatohead on Thu Oct 01, 2015 7:48 pm, edited 1 time in total.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Mr PH
It is right and proper that you feel you can make a decision relevant to your individual situation. The Beacon has largely younger posters for whom stem cell transplants are the preferred option by myeloma doctors. Many of these people do very well.
Those of us who are not having transplants hope that the treatment combinations possible will give us some few years with quality of life.
Younger patients find a terminal illness harder to come to terms with than older patients and naturally seek an approach that appears to give them longer remission / life. But life holds no guarantees and I see many people getting worried when the inevitable relapse occurs, even though we knew this would happen. I would love to be a long term survivor, but realistically do not expect this.
When one is older, has had health problems that might suggest serious risk then transplant seems less clear. Going through a very drastic treatment for uncertain outcomes and longer period of poor quality of life may not seem worth it. I have no regrets about not having transplant with my own situation so can respect your decision.
It is right and proper that you feel you can make a decision relevant to your individual situation. The Beacon has largely younger posters for whom stem cell transplants are the preferred option by myeloma doctors. Many of these people do very well.
Those of us who are not having transplants hope that the treatment combinations possible will give us some few years with quality of life.
Younger patients find a terminal illness harder to come to terms with than older patients and naturally seek an approach that appears to give them longer remission / life. But life holds no guarantees and I see many people getting worried when the inevitable relapse occurs, even though we knew this would happen. I would love to be a long term survivor, but realistically do not expect this.
When one is older, has had health problems that might suggest serious risk then transplant seems less clear. Going through a very drastic treatment for uncertain outcomes and longer period of poor quality of life may not seem worth it. I have no regrets about not having transplant with my own situation so can respect your decision.
Re: Autologous transplant for refractory / high risk myeloma
Hello Edna,
Given the rules that exist in the UK regarding who can, and cannot, have stem cell transplants, would you have been able to have a stem cell transplant even if you wanted to have one?
My impression from some of your earlier postings was that, given your age and other health conditions that you have, you would not be permitted under existing UK guidelines to have a transplant, even if you wanted to have one. However, I may have misunderstood what you wrote previously.
Given the rules that exist in the UK regarding who can, and cannot, have stem cell transplants, would you have been able to have a stem cell transplant even if you wanted to have one?
My impression from some of your earlier postings was that, given your age and other health conditions that you have, you would not be permitted under existing UK guidelines to have a transplant, even if you wanted to have one. However, I may have misunderstood what you wrote previously.
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JimNY
Re: Autologous transplant for refractory / high risk myeloma
Hello Jim NY
I was actually originally deemed to be ASCT candidate by first haem- oncologist as I was well within the age group for this and had not had significant health issues from this person's perspective. I had been 'healthy'. But the clinician failed to from the start take into account all the things I myself deemed relevant.
I became dismayed and went for second opinion to an expert, (I mean expert), who did not talk about ASCT, but took on board issues I raised. During induction I developed pneumonia fairly soon and it was unclear if I would come away unscathed. The treating hospital doctors, (who held regular meetings), began to be aware of the issues now as I was.
Initially the doctor treating me put me forward for stem cell collection / ASCT ( standard treatment) and I was given the usual pre- tests. At clinical team meetings I was further discussed in more detail and more specialist doctors asked to assess me specifically with respect to my ability to take HDT / ASCT treatment.
In the end the team met with transplant doctor to discuss my case. Then I had meeting with the latter who pulled no punches as to the much higher risks to me (I already had worked this out myself).
If I had wanted the ASCT I could have pushed hard for it. But, leading clinicians in the field would not rightly have been keen. The prospect of possibly loosing a patient during treatment advised as personally too risky is not what good doctors want as an outcome. I had also met a patient with part similar issue to me who relapsed 5 months post ASCT and saw the struggle for this person.
I do know patients in spite of high risk of death, (not myeloma), from treatment did take the risk involved to have treatment and continue.
I get the impression in the US these issues of individual risk to patients may be less commonly addressed. This may be due to the way treatments and tests may be promoted and funded. Each system has its plus and minus points. I would welcome access to more treatments, but only if the risks to me personally are assessed properly. We hear from those doing well, but what about those who do not do well?
I was actually originally deemed to be ASCT candidate by first haem- oncologist as I was well within the age group for this and had not had significant health issues from this person's perspective. I had been 'healthy'. But the clinician failed to from the start take into account all the things I myself deemed relevant.
I became dismayed and went for second opinion to an expert, (I mean expert), who did not talk about ASCT, but took on board issues I raised. During induction I developed pneumonia fairly soon and it was unclear if I would come away unscathed. The treating hospital doctors, (who held regular meetings), began to be aware of the issues now as I was.
Initially the doctor treating me put me forward for stem cell collection / ASCT ( standard treatment) and I was given the usual pre- tests. At clinical team meetings I was further discussed in more detail and more specialist doctors asked to assess me specifically with respect to my ability to take HDT / ASCT treatment.
In the end the team met with transplant doctor to discuss my case. Then I had meeting with the latter who pulled no punches as to the much higher risks to me (I already had worked this out myself).
If I had wanted the ASCT I could have pushed hard for it. But, leading clinicians in the field would not rightly have been keen. The prospect of possibly loosing a patient during treatment advised as personally too risky is not what good doctors want as an outcome. I had also met a patient with part similar issue to me who relapsed 5 months post ASCT and saw the struggle for this person.
I do know patients in spite of high risk of death, (not myeloma), from treatment did take the risk involved to have treatment and continue.
I get the impression in the US these issues of individual risk to patients may be less commonly addressed. This may be due to the way treatments and tests may be promoted and funded. Each system has its plus and minus points. I would welcome access to more treatments, but only if the risks to me personally are assessed properly. We hear from those doing well, but what about those who do not do well?
Re: Autologous transplant for refractory / high risk myeloma
Edna wrote:
My feelings exactly. Thank you, Edna.
It is right and proper that you feel you can make a decision relevant to your individual situation. The Beacon has largely younger posters for whom stem cell transplants are the preferred option by myeloma doctors. Many of these people do very well.
Those of us who are not having transplants hope that the treatment combinations possible will give us some few years with quality of life.
Younger patients find a terminal illness harder to come to terms with than older patients and naturally seek an approach that appears to give them longer remission / life. But life holds no guarantees and I see many people getting worried when the inevitable relapse occurs, even though we knew this would happen. I would love to be a long term survivor, but realistically do not expect this.
When one is older, has had health problems that might suggest serious risk then transplant seems less clear. Going through a very drastic treatment for uncertain outcomes and longer period of poor quality of life may not seem worth it. I have no regrets about not having transplant with my own situation so can respect your decision.
My feelings exactly. Thank you, Edna.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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