Dear Mark,
Thank you for your post!
I too have been thinking and reading about doing an allo transplant instead of auto for my mum. She was diagnosed in September and is scheduled to do an auto transplant in January.
I asked her doctor in the beginning if an allo was an option, and she simply replied that it is not recommended and the conversation was over.
I then asked the specialist at the hospital and he was more open to discuss it.
She is 52 years old, with a relatively aggressive phenotype but without the chromosomal aberrations del(17p) and possibly without t(4:14) (they said the test was inconclusive but possibly negative).
I'm at a loss of what we should do, but reading this forum helps.
Forums
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Progress toward a multiple myeloma cure?
Hi Mark,
I want to thank you for a thought provoking thread.
You asked if I had any thoughts on the topic.
My thoughts are only my opinion based on what I have learned as a long-term patient and based on my own research, in large, as a participant on the Beacon Forums. With that lead disclaimer, let me say that for young high-risk patients, I would seriously recommend they consider an allo transplant. I think that, although it is not likely curative, it does give the young patient the best chance at long-term overall survival.
With respect to standard-risk young patient, my opinion is different. Those patients have other options for long-term overall survival and therefore the risks associated with an allo transplant may not be worth it.
Allos are less risky now than they used to be, but still carry a much higher risk than auto transplants and novel agent triplet treatments.
I want to thank you for a thought provoking thread.
You asked if I had any thoughts on the topic.
My thoughts are only my opinion based on what I have learned as a long-term patient and based on my own research, in large, as a participant on the Beacon Forums. With that lead disclaimer, let me say that for young high-risk patients, I would seriously recommend they consider an allo transplant. I think that, although it is not likely curative, it does give the young patient the best chance at long-term overall survival.
With respect to standard-risk young patient, my opinion is different. Those patients have other options for long-term overall survival and therefore the risks associated with an allo transplant may not be worth it.
Allos are less risky now than they used to be, but still carry a much higher risk than auto transplants and novel agent triplet treatments.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Progress toward a multiple myeloma cure?
From what I understand, allo transplants are more risky - graft failure.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Progress toward a multiple myeloma cure?
I did review a picture that showed more than ten people perform auto or allo stem cell transplants at Stanford Hospital in early 2011. At that time, I had to make a decision about an auto or allo transplant for my wife, 52 years old, myeloma on pancreas and pelvic with two stents on her bile duct, after visiting department of stem cell transplant (SCT). I did ask nurses where these people of the picture are, but I did not get any answer. A doctor from SCT told her multiple myeloma genetics are very weak, and give me a paper shows most multiple myeloma patients with auto SCT will relapse after four years in Europe.
I decide to do nothing for SCT after the chemotherapy is very successful by using heavy Velcade, Revlimid, and dexamethasone (VRD) within less than ten cycles and acupuncture for one year, but saving her stem cells in frozen on early 2014 if she need a SCT. Now, she did use Velcade on maintenance therapy. Our oncologist and patient are very happy with this result.
It is always tough to make a decision of any treatment for multiple myeloma patient's life, but our case is very unique at Stanford.
I decide to do nothing for SCT after the chemotherapy is very successful by using heavy Velcade, Revlimid, and dexamethasone (VRD) within less than ten cycles and acupuncture for one year, but saving her stem cells in frozen on early 2014 if she need a SCT. Now, she did use Velcade on maintenance therapy. Our oncologist and patient are very happy with this result.
It is always tough to make a decision of any treatment for multiple myeloma patient's life, but our case is very unique at Stanford.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Progress toward a multiple myeloma cure?
Thanks again for all of the responses.
I want to make a couple of points about the discussion. I take it that no one has seen anything that makes them think that any new therapy has shown any ability to cure a patient as no one named one and showed any evidence that it is occurring.
There were a lot of ways the discussion could have gone but by and large it turned into discussing one therapy against another. I thought someone would mention that both studies did not include novel agents so the rates could be higher if incorporating them into treatment plans, particularly with allo transplants for younger patients, could prove to have a higher cure/long term remission rate. I knew none of the no transplant people would come into the thread and say that since it would be acknowledging that transplants actually benefit some patients.
I mentioned earlier that I posted something it my original post that contradicts what I normally say and the study right above contradicts it as well. I am constantly making comments like "I doubt there will ever be a "one shot miracle cure"" and I was hoping someone was going to mention this sentence:
"Hopefully they will make a lot more progress toward curing myeloma or at least providing the excellent quality of life and long-term drug free remission that allo transplant has provided for this high-risk patient."
While I do give the allo most/all of the credit for the quality of life I currently enjoy, I always give credit to the drugs that got me to remission prior to transplant since the most predictive factor of if an allo transplant is successful is being in remission (the deeper the better) prior to doing the transplant.
By the way, I do think they have made progress toward curing younger myeloma patients with a donor/willing to do an upfront allo since the newer therapies can get deeper remissions prior to doing an allo and I know from personal experience how far they have come with the transplant process. I agree with everyone else that their appears to be little progress with a newer therapy replacing the transplants for a potential cure. That should be obvious as the "myeloma thought leaders" are moving toward keeping patients on drugs indefinitely. If they were curing more patients that would not be necessary.
In my opinion It is a shame that the "myeloma thought leaders" have brought about this thought that we should be pitting one therapy against another. Not all doctors and patients view the therapies as competing with one another. The ones that think like the doctors in the second study should be able to show great progress moving forward as they clearly do not view the therapies as competitors, but therapies that compliment each other.
"In addition, incorporation of novel agents before and after allo-SCT to increase the rate and duration of high-quality responses, as well as identification of those patients mostly benefiting from this procedure, will likely contribute to improve long-term outcomes."
I want to make a couple of points about the discussion. I take it that no one has seen anything that makes them think that any new therapy has shown any ability to cure a patient as no one named one and showed any evidence that it is occurring.
There were a lot of ways the discussion could have gone but by and large it turned into discussing one therapy against another. I thought someone would mention that both studies did not include novel agents so the rates could be higher if incorporating them into treatment plans, particularly with allo transplants for younger patients, could prove to have a higher cure/long term remission rate. I knew none of the no transplant people would come into the thread and say that since it would be acknowledging that transplants actually benefit some patients.
I mentioned earlier that I posted something it my original post that contradicts what I normally say and the study right above contradicts it as well. I am constantly making comments like "I doubt there will ever be a "one shot miracle cure"" and I was hoping someone was going to mention this sentence:
"Hopefully they will make a lot more progress toward curing myeloma or at least providing the excellent quality of life and long-term drug free remission that allo transplant has provided for this high-risk patient."
While I do give the allo most/all of the credit for the quality of life I currently enjoy, I always give credit to the drugs that got me to remission prior to transplant since the most predictive factor of if an allo transplant is successful is being in remission (the deeper the better) prior to doing the transplant.
By the way, I do think they have made progress toward curing younger myeloma patients with a donor/willing to do an upfront allo since the newer therapies can get deeper remissions prior to doing an allo and I know from personal experience how far they have come with the transplant process. I agree with everyone else that their appears to be little progress with a newer therapy replacing the transplants for a potential cure. That should be obvious as the "myeloma thought leaders" are moving toward keeping patients on drugs indefinitely. If they were curing more patients that would not be necessary.
In my opinion It is a shame that the "myeloma thought leaders" have brought about this thought that we should be pitting one therapy against another. Not all doctors and patients view the therapies as competing with one another. The ones that think like the doctors in the second study should be able to show great progress moving forward as they clearly do not view the therapies as competitors, but therapies that compliment each other.
"In addition, incorporation of novel agents before and after allo-SCT to increase the rate and duration of high-quality responses, as well as identification of those patients mostly benefiting from this procedure, will likely contribute to improve long-term outcomes."
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Mark11
Re: Progress toward a multiple myeloma cure?
Allo transplants are much more dangerous, I heard of a 30% mortality. Here is part of an article that refers to this "inconvenience"
"Autologous stem cell transplantation is considered the standard treatment for patients younger than 65 years with multiple myeloma (multiple myeloma).1 While this approach produces complete or near complete remission in about 50% of patients, all patients will eventually relapse and the median duration of response is only 42 months.2
Conversely, allogeneic stem cell transplantation (allo-SCT) is associated with a significantly lower risk of relapse and can result in long-term disease-free survival.3-6 The reduced relapse risk after allo-SCT is probably due to the unique capacity of donor lymphocytes to recognize and kill recipient plasma cells. Several reports have supported the existence of this “graft-versus-myeloma (GVM) effect” in the allogeneic setting. However, the potential benefit of allo-SCT is offset by the high transplant-related mortality, and therefore there is currently widespread interest in the use of novel strategies using nonmyeloablative conditioning..."
http://www.bloodjournal.org/content/102/5/1927?sso-checked=true
I also found this extract interesting:
"Allogeneic hematopoietic cell transplantation (HCT) may be the only treatment for patients with multiple myeloma that has a chance of producing cure. Its use, however, is limited since even ideal candidates who undergo allogeneic HCT have a high rate of treatment-related mortality, and because its efficacy compared with autologous HCT is not fully established. The treatment-related mortality associated with allogeneic HCT is decreasing with the advent of nonmyeloablative preparative regimens. At the same time, new chemotherapeutic agents (eg, bortezomib, thalidomide, lenalidomide) are being incorporated into the initial treatment of multiple myeloma, and survival with chemotherapy alone or with autologous HCT is improving. As such, the role of allogeneic HCT in the treatment of multiple myeloma is not clear."
http://www.uptodate.com/contents/allogeneic-hematopoietic-cell-transplantation-in-multiple-myeloma
Sometimes I wonder WHAT is clear when dealing with the possibilities of cures for myeloma? Nothing, it seems to me.
"Autologous stem cell transplantation is considered the standard treatment for patients younger than 65 years with multiple myeloma (multiple myeloma).1 While this approach produces complete or near complete remission in about 50% of patients, all patients will eventually relapse and the median duration of response is only 42 months.2
Conversely, allogeneic stem cell transplantation (allo-SCT) is associated with a significantly lower risk of relapse and can result in long-term disease-free survival.3-6 The reduced relapse risk after allo-SCT is probably due to the unique capacity of donor lymphocytes to recognize and kill recipient plasma cells. Several reports have supported the existence of this “graft-versus-myeloma (GVM) effect” in the allogeneic setting. However, the potential benefit of allo-SCT is offset by the high transplant-related mortality, and therefore there is currently widespread interest in the use of novel strategies using nonmyeloablative conditioning..."
http://www.bloodjournal.org/content/102/5/1927?sso-checked=true
I also found this extract interesting:
"Allogeneic hematopoietic cell transplantation (HCT) may be the only treatment for patients with multiple myeloma that has a chance of producing cure. Its use, however, is limited since even ideal candidates who undergo allogeneic HCT have a high rate of treatment-related mortality, and because its efficacy compared with autologous HCT is not fully established. The treatment-related mortality associated with allogeneic HCT is decreasing with the advent of nonmyeloablative preparative regimens. At the same time, new chemotherapeutic agents (eg, bortezomib, thalidomide, lenalidomide) are being incorporated into the initial treatment of multiple myeloma, and survival with chemotherapy alone or with autologous HCT is improving. As such, the role of allogeneic HCT in the treatment of multiple myeloma is not clear."
http://www.uptodate.com/contents/allogeneic-hematopoietic-cell-transplantation-in-multiple-myeloma
Sometimes I wonder WHAT is clear when dealing with the possibilities of cures for myeloma? Nothing, it seems to me.
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Progress toward a multiple myeloma cure?
Wow, this thread took a life of its own! This may sound a bit acerbic, but maybe the Beacon should update its Forum policy and urge participants to read it. We all mean well posting here. However, sometimes these discussions, I am afraid, may do more harm than good. Caveat Emptor! We should stick to sharing our stories, experiences, and guide newer patients to helpful resources. Speculation, medical opinions, tangential discussion and so on, we should save for coffee with friends. People that read these forums can actually be susceptible to the information here and make decisions based on that information. One thing I'll give to Mark, he always has his research down. He may add his own view and interpretation of the research, but the research is topical and well interwoven in whatever he is discussing - usually, the implications of an allo transplant. On the other hand, off the wall opinions, or citations to papers from 2003 for doom's day allo results, I think may be more detrimental than helpful.
So bottom line here is what? No curative therapy right now for younger patients, except perhaps the curative potential of an allo. I know we've all seen some people live longer than 10 years, some shorter, some with prolonged exposure to medication, some without. However, when it comes to it, is there anything else out there with longer than 10 year follow up that shows survival with MRD and no maintenance therapy or multiple cycles of relapse therapy? Anything on the horizon promising such cure? I for one am hoping for such cure and that Elo or whatever antibody is prevalent now will carry me there once I relapse.
Have a great day and I apologize for my somewhat critical tone but I couldn't resist. I just think that these forums impact people's lives and sometimes we approach them a lot more nonchalantly than we should.
So bottom line here is what? No curative therapy right now for younger patients, except perhaps the curative potential of an allo. I know we've all seen some people live longer than 10 years, some shorter, some with prolonged exposure to medication, some without. However, when it comes to it, is there anything else out there with longer than 10 year follow up that shows survival with MRD and no maintenance therapy or multiple cycles of relapse therapy? Anything on the horizon promising such cure? I for one am hoping for such cure and that Elo or whatever antibody is prevalent now will carry me there once I relapse.
Have a great day and I apologize for my somewhat critical tone but I couldn't resist. I just think that these forums impact people's lives and sometimes we approach them a lot more nonchalantly than we should.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Progress toward a multiple myeloma cure?
Hi Annamaria,
You obviously did not understand the meaning of my post. I do thank you for putting up those links, especially the first one that was published in 2003, meaning the patients were treated in the 1990's. Long-time readers here should be familiar with it, as I posted it many times in the past.
That study makes it VERY clear which patients have the best chance for cure / long-term remission.
With better drugs and the improvements in the transplant process I believe that the number in the PCR negative group would rise. Of course that takes a person with a positive outlook and the ability to understand the concepts of what they are reading.
I have met many long term survivors of allogeneic transplant. They are very upbeat people that live life to the fullest after their diagnosis. None of them has your mindset.
You obviously did not understand the meaning of my post. I do thank you for putting up those links, especially the first one that was published in 2003, meaning the patients were treated in the 1990's. Long-time readers here should be familiar with it, as I posted it many times in the past.
Sometimes I wonder WHAT is clear when dealing with the possibilities of cures for myeloma? Nothing, it seems to me.
That study makes it VERY clear which patients have the best chance for cure / long-term remission.
Patients in complete clinical remission after myeloablative allogeneic stem cell transplantation (allo-SCT) were enrolled in a longitudinal study to assess the predictive value of molecular monitoring. Using polymerase chain reaction (PCR) for immunoglobulin gene rearrangements it was possible to generate a clone-specific molecular marker in 48 of 70 patients. Of these 48 patients, 16 (33%) attained durable PCR-negativity after transplantation, whereas 13 (27%) remained persistently PCR-positive and 19 (40%) showed a mixed pattern. The cumulative risk of relapse at 5 years was 0% for PCR-negative patients, 33% for PCR-mixed patients, and 100% for PCR-positive patients. Within the group studied it was not possible to identify any clinical feature predictive of durable PCR-negativity. We believe that these findings could prompt the design of prospective studies to evaluate if the treatment of molecular disease can extend remission duration and survival.
With better drugs and the improvements in the transplant process I believe that the number in the PCR negative group would rise. Of course that takes a person with a positive outlook and the ability to understand the concepts of what they are reading.
I have met many long term survivors of allogeneic transplant. They are very upbeat people that live life to the fullest after their diagnosis. None of them has your mindset.
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Mark11
Re: Progress toward a multiple myeloma cure?
I don't understand why you criticize me and why you are so sarcastic. Is it not true that allo transplants are much more dangerous than ASCT? Do you not think that if it were not so a lot more people would choose to go that route and try to get rid of myeloma for good, and many more doctors would recommend it? And finally, do you find it nice to put down someone with your same, awful disease?
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58