One of the things I will have to decide upon is whether to try an autologous stem cell transplant (ASCT). According to cytogenetic analysis, I am in an intermediate to high-risk group of multiple myeloma patients, having 13q deletion, and the t(11:14) translocation. I am also at Stage III, according to both the Durie-Salmon and ISS criteria. Finally, I have a high cancer load, with 90%+ myeloma cells, and I am 65 years old.
No doubt because of all of the above, I was told by both my oncologist and the myeloma expert I consulted for a second opinion, that I was not a candidate for a stem cell procedure without showing at least a substantial partial response (PR) to induction therapy with drugs.
So I embarked on treatment, first with Revlimid (lenalidomide) and subsequently with Velcade (bortezomib) abetted by steroids. I responded to neither, and now we are trying Kyprolis (carfizomib) with steroids.
I have read that if there is no progress in getting a PR during induction, a stem cell procedure is unlikely to be successful. But I have also read that some patients like me do go ahead with stem cell procedures, even in the absence of a PR during induction.
I wonder if anyone who falls into the latter category can share his/her experience with having a autologous stem cell procedure in the absence of achieving a response during induction?
I do not relish the idea of going through a month-long process involving hospitalization, and side effects such as nausea, weight loss, rampant fatigue, etc., only to gain no benefit or little benefit. On the other hand, drug therapy by itself has not worked so far.
Perhaps the prudent thing is to keep trying the drugs, including the older ones like melphalan, and just give up on the stem cell option.
Right now, aside from some very bad bone pain, I am doing well with supportive therapy (getting transfusions as needed, IVIG and Zometa infusions) while we wait to see if I respond to the Kyprolis.
But I really need to settle this stem cell option issue. Just wondering what others have experienced or thought about it, if you are in the refractory or high risk category.
Thanks for any input.
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
I noticed that folks have read my original post, but there have been no responses, so let me add some additional info.
On the Texas Oncology Web site, one finds a statement to the effect that Stage II or Stage III multiple myeloma sufferers are first treated with drugs during an induction phase, with the goal being the achievement of a complete response (CR) or as close to it as possible. That is what I was also told at City of Hope.
And yet, on the Nature Web site, it is stated that the intensive chemo done during a stem cell transplant can be effective even if there is no response during induction.
So, my question is, has anyone with advanced multiple myeloma gone through a stem cell procedure, having had no response during induction, or else not even having induction? Or does anyone have any info that might clarify these apparently contradictory recommendations?
Thanks again for any thoughts.
On the Texas Oncology Web site, one finds a statement to the effect that Stage II or Stage III multiple myeloma sufferers are first treated with drugs during an induction phase, with the goal being the achievement of a complete response (CR) or as close to it as possible. That is what I was also told at City of Hope.
And yet, on the Nature Web site, it is stated that the intensive chemo done during a stem cell transplant can be effective even if there is no response during induction.
So, my question is, has anyone with advanced multiple myeloma gone through a stem cell procedure, having had no response during induction, or else not even having induction? Or does anyone have any info that might clarify these apparently contradictory recommendations?
Thanks again for any thoughts.
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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,
Are you citing this letter to the editor in Nature?
http://www.nature.com/bmt/journal/v47/n1/full/bmt201118a.html
Are you citing this letter to the editor in Nature?
http://www.nature.com/bmt/journal/v47/n1/full/bmt201118a.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Autologous transplant for refractory / high risk myeloma
Hi Multibilly
No, I was referring to this:
http://www.nature.com/bmt/journal/v30/n10/full/1703717a.html
which describes an earliar study than the one in your link, but the same point is made in both.
Reflecting on this, I just don't understand why one even needs the induction phase. What could be the logic behind it? The agents used in induction are typically the so-called novel agents, but the classical treatment used in the high-dose therapy after stem cell extraction is melphalan.
So, if one is disqualified from stem cell procedures because of survival risk, or patient preference, it makes sense to use the newer drugs as therapy. But, why insist on an induction phase using such drugs as a prerequisite for a transplant otherwise?
No, I was referring to this:
http://www.nature.com/bmt/journal/v30/n10/full/1703717a.html
which describes an earliar study than the one in your link, but the same point is made in both.
Reflecting on this, I just don't understand why one even needs the induction phase. What could be the logic behind it? The agents used in induction are typically the so-called novel agents, but the classical treatment used in the high-dose therapy after stem cell extraction is melphalan.
So, if one is disqualified from stem cell procedures because of survival risk, or patient preference, it makes sense to use the newer drugs as therapy. But, why insist on an induction phase using such drugs as a prerequisite for a transplant otherwise?
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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
Hello Mr. PH
Here is another fairly recent article from Dr. Gertz of the Mayo Clinic. Its long, and I did not read the whole thing, but it does go in depth into the philosophy of when and how to use ASCT.
http://www.bloodjournal.org/content/124/6/882?sso-checked=true
If you go to some of the major German hospitals, you will find that they much more use tandem auto transplants, in some cases with minimum induction therapy with the novel agents. They feel that the tandem ASCT performs similarly to induction - ASCT. Also, UAMS I understand uses tandem ASCT's with higher frequencies.
Your issue is that your response is so-so with the novel agents. The 90% plasma cells at diagnosis is pretty high, and might be the reason that the novel agents are not working so well, but others report a decent response even with the % that high. My wife had that high, and did get a VGPR, but could not get all the way to CR (though pretty close) so far.
Some doctors favor the ASCT approach more heavily than others, and are sometimes called in the vernacular as "transplanters". It is possible that the single or double ASCT approach may work better for you, its impossible to say. You may want to find and talk to a doctor that is much more experienced in the ASCT approach (a transplanter), and get an idea as to how he or she may move forward in your case. Good luck.
Here is another fairly recent article from Dr. Gertz of the Mayo Clinic. Its long, and I did not read the whole thing, but it does go in depth into the philosophy of when and how to use ASCT.
http://www.bloodjournal.org/content/124/6/882?sso-checked=true
If you go to some of the major German hospitals, you will find that they much more use tandem auto transplants, in some cases with minimum induction therapy with the novel agents. They feel that the tandem ASCT performs similarly to induction - ASCT. Also, UAMS I understand uses tandem ASCT's with higher frequencies.
Your issue is that your response is so-so with the novel agents. The 90% plasma cells at diagnosis is pretty high, and might be the reason that the novel agents are not working so well, but others report a decent response even with the % that high. My wife had that high, and did get a VGPR, but could not get all the way to CR (though pretty close) so far.
Some doctors favor the ASCT approach more heavily than others, and are sometimes called in the vernacular as "transplanters". It is possible that the single or double ASCT approach may work better for you, its impossible to say. You may want to find and talk to a doctor that is much more experienced in the ASCT approach (a transplanter), and get an idea as to how he or she may move forward in your case. Good luck.
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JPC - Name: JPC
Re: Autologous transplant for refractory / high risk myeloma
Hello Mr PH annd JPC
One concern I have about some ways questions are being posed and responses provided is that although there are studies and research ongoing in the field of myeloma, the search for certainty regarding outcomes for our own individual picture of the disease may be something other patients cannot predict anymore than a doctor. Response to treatments is all we have to go on.
Pointing one at research is helpful, but it does not always give us an answer I find. This especially since the specialists have different approaches and philosophies as well as access to treatments for their patients with myeloma where the outcome fr a patient is just not predictable beforehand, save relapse is inevitable.
What we do know that appears consistent is that younger, heathier, fitter patients with myeloma do well with transplants and have longest remissions. Healthier fitter older people also can do well.
The area which is still not yet clear is what array of molecular genetics are important in choice of treatments and outcomes. iFISH and conventional cytogenetics only give so much information. I have negative markers indicating poor survival, but these are not clear cut in the research. I did not want ASCT and was deemed thankfully not to be a candidate even though I had an excellent, fast VGPR to induction. But relapse occured after a year and on the next line of treatment in the same two initial cycles I achieved CR in terms of marker levels for the disease. I was astounded as I had not expected this as my treating clinician had suggested before the test that my current regime did not give as fast a response as my first line of treatment! So do not try to predict. I also know a CR does not necessarily mean long remission, although I hope it does.
I thought having stage 3 disease was always a negative in terms of response to treatment and outcomes. But I have since found many clinicians state that stage of disease for an individual is not important, except most of us will have damaged bones, kidney etc. which can influence survival.
Mr PH I recommend, if you are not already doing so, to see doctors at a myeloma clinic where the transplant doctor is part of the team because the hospital has a transplant arm itself, so you can get a rounded perspective to your query.
.
One concern I have about some ways questions are being posed and responses provided is that although there are studies and research ongoing in the field of myeloma, the search for certainty regarding outcomes for our own individual picture of the disease may be something other patients cannot predict anymore than a doctor. Response to treatments is all we have to go on.
Pointing one at research is helpful, but it does not always give us an answer I find. This especially since the specialists have different approaches and philosophies as well as access to treatments for their patients with myeloma where the outcome fr a patient is just not predictable beforehand, save relapse is inevitable.
What we do know that appears consistent is that younger, heathier, fitter patients with myeloma do well with transplants and have longest remissions. Healthier fitter older people also can do well.
The area which is still not yet clear is what array of molecular genetics are important in choice of treatments and outcomes. iFISH and conventional cytogenetics only give so much information. I have negative markers indicating poor survival, but these are not clear cut in the research. I did not want ASCT and was deemed thankfully not to be a candidate even though I had an excellent, fast VGPR to induction. But relapse occured after a year and on the next line of treatment in the same two initial cycles I achieved CR in terms of marker levels for the disease. I was astounded as I had not expected this as my treating clinician had suggested before the test that my current regime did not give as fast a response as my first line of treatment! So do not try to predict. I also know a CR does not necessarily mean long remission, although I hope it does.
I thought having stage 3 disease was always a negative in terms of response to treatment and outcomes. But I have since found many clinicians state that stage of disease for an individual is not important, except most of us will have damaged bones, kidney etc. which can influence survival.
Mr PH I recommend, if you are not already doing so, to see doctors at a myeloma clinic where the transplant doctor is part of the team because the hospital has a transplant arm itself, so you can get a rounded perspective to your query.
.
Re: Autologous transplant for refractory / high risk myeloma
Is there a reason why they didn't do a combo treatment instead of a single? Something like Revlimid, Velcade, and dex?
Re: Autologous transplant for refractory / high risk myeloma
Hello JPC
Thank you very much for posting Dr. Gerz's article. He does answer my question: It appears from the studies he cites that an induction phase that elicits a response (the deeper, the better) results in a better response to ASCT. It's not completely clear whether the referenced better response is really a sum of the responses during induction with novel agents and the ASCT, or whether the induction phase somehow makes the ASCT more effective in itself.
And Dr. Gerz also says that a lack of response during induction should not preclude doing an ASCT. So there is no contradiction or incompatibility here. It's just that an induction phase followed by an ASCT results in a better overall response than just an ASCT, provided there is at least a partial response during induction.
One question remains: Since there are many options for drugs or drug combinations during induction, how does one know when to "quit" and go to an ASCT as opposed to trying multiple combinations if one fails? I would guess the answer depends on the treating oncologist's judgment: Those with a bias toward drug therapy might try additional combinations if one fails, while "transplanters" might tend to go directly to an ASCT if a carefully chosen induction regime fails to provoke a response.
Thanks also for your advice on what to do going forward. I am scheduled for a discussion revisiting the possibility of an ASCT for my treatment at City of Hope, which is definitely a transplant-oriented treatment center for multiple myeloma. The additional material in the Gerz article concerning one's suitability for an ASCT will be very helpful in that discussion.
Thank you very much for posting Dr. Gerz's article. He does answer my question: It appears from the studies he cites that an induction phase that elicits a response (the deeper, the better) results in a better response to ASCT. It's not completely clear whether the referenced better response is really a sum of the responses during induction with novel agents and the ASCT, or whether the induction phase somehow makes the ASCT more effective in itself.
And Dr. Gerz also says that a lack of response during induction should not preclude doing an ASCT. So there is no contradiction or incompatibility here. It's just that an induction phase followed by an ASCT results in a better overall response than just an ASCT, provided there is at least a partial response during induction.
One question remains: Since there are many options for drugs or drug combinations during induction, how does one know when to "quit" and go to an ASCT as opposed to trying multiple combinations if one fails? I would guess the answer depends on the treating oncologist's judgment: Those with a bias toward drug therapy might try additional combinations if one fails, while "transplanters" might tend to go directly to an ASCT if a carefully chosen induction regime fails to provoke a response.
Thanks also for your advice on what to do going forward. I am scheduled for a discussion revisiting the possibility of an ASCT for my treatment at City of Hope, which is definitely a transplant-oriented treatment center for multiple myeloma. The additional material in the Gerz article concerning one's suitability for an ASCT will be very helpful in that discussion.
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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
Hi Edna
You make very good points about the limitations of current research. But it does make deciding which treatment to pursue very challenging. One reads again and again that how myeloma manifests itself in a given patient is hard to predict, although the only game in town is really to try to rely on experience and studies highlighting cases similar to what is presented by a given patient in making treatment recommendations.
The "relapse is inevitable" part is depressing (is it not?) and I try not to dwell on that. Perhaps, as I am sure we all hope, that will change in our lifetimes, and so the game becomes choosing treatments, one after another, that will keep us around long enough to see that day.
By the way, I am very glad to hear of your CR. At this point, I would be happy with even a PR!
Yes, there is a difference between survival and level of response to treatment. I have read in many places that some very long-term survivors never achieve a CR.
Thank you, Edna, for your insights and for sharing your knowledge and experience. I intend to follow your advice.
You make very good points about the limitations of current research. But it does make deciding which treatment to pursue very challenging. One reads again and again that how myeloma manifests itself in a given patient is hard to predict, although the only game in town is really to try to rely on experience and studies highlighting cases similar to what is presented by a given patient in making treatment recommendations.
The "relapse is inevitable" part is depressing (is it not?) and I try not to dwell on that. Perhaps, as I am sure we all hope, that will change in our lifetimes, and so the game becomes choosing treatments, one after another, that will keep us around long enough to see that day.
By the way, I am very glad to hear of your CR. At this point, I would be happy with even a PR!
Yes, there is a difference between survival and level of response to treatment. I have read in many places that some very long-term survivors never achieve a CR.
Thank you, Edna, for your insights and for sharing your knowledge and experience. I intend to follow your advice.
Last edited by MrPotatohead on Wed Sep 09, 2015 1:35 am, edited 2 times 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
TerryS asked:
As I recall, my oncologist, after my failure on Revlimid, wanted to try Revlimid and Velcade, but first wanted to see if I responded to Velcade. Both Revlimid and Velcade caused marked myelosuppression in my case, so I think he was just being cautious. But it is a fair question to ask him.
Thanks for bringing it up, TerryS. Much appreciated.
Is there a reason why they didn't do a combo treatment instead of a single? Something like Revlimid, Velcade, and dex?"
As I recall, my oncologist, after my failure on Revlimid, wanted to try Revlimid and Velcade, but first wanted to see if I responded to Velcade. Both Revlimid and Velcade caused marked myelosuppression in my case, so I think he was just being cautious. But it is a fair question to ask him.
Thanks for bringing it up, TerryS. Much appreciated.
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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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