I don't mean to be pessimistic, but I have been reading up on the many trials and research posts regarding the survival times of people that have had autologous stem cell transplants.
As one myself (two years this month), I was curious as to how much your overall median survival was improved.
From what I have read (and I do only look at reliable sites like Myeloma Beacon), they do not add to your overall survival time, but they do say it will give you longer progression-free time? What's it really mean? Yes, your levels will drop, but you won't be around any longer. I'm not saying it doesn't happen, but in general that is what they say.
If this is the case, why do we have them? Some people would say they improve your quality of life? But when you may be looking at 2-5 years and then you take the time it takes to get over the transplant (in my case 12 months), for some people longer, I don't understand
It says in so many trials "Median overall survival rates are not improved by auto transplant." I wonder if I had known that at the time, would I have still done it?
My experience was not one of the better ones, and I suffered terribly mentally and physically. It so bad I wouldn't even let my family see me for a week; I couldn't cope with the anguish and pain of it all.
So my question is: If you were told the stem cell transplant may not improve your lifespan, would you have still had it?
Forums
-
Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Why have an (autologous) stem cell transplant?
I think as more and more novel myeloma medications are discovered, the less and less stem cell transplants will have a role in myeloma treatment.
-
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: Why have an (autologous) stem cell transplant?
Hi Tori,
From what I've read here on the Beacon, it sounds like a lot depends on the cytogenetic risk factors a patient might have, as well as personal and physician preference.
I would be interested in what others who've had a transplant say about your question. My husband was diagnosed in 2011 and has not had an autologous stem cell transplant yet, but did have his stem cells collected back then. He is on his third novel therapy now, and his hematologist mentioned the possibility of an autologous stem cell transplant in the near future.
I know many people have written they had an easy time during their transplants, but after reading many of the difficulties others have faced, I worry about him having the stem cell transplant. No easy answer either way ...
Best wishes,
Chris M.
From what I've read here on the Beacon, it sounds like a lot depends on the cytogenetic risk factors a patient might have, as well as personal and physician preference.
I would be interested in what others who've had a transplant say about your question. My husband was diagnosed in 2011 and has not had an autologous stem cell transplant yet, but did have his stem cells collected back then. He is on his third novel therapy now, and his hematologist mentioned the possibility of an autologous stem cell transplant in the near future.
I know many people have written they had an easy time during their transplants, but after reading many of the difficulties others have faced, I worry about him having the stem cell transplant. No easy answer either way ...
Best wishes,
Chris M.
-
Chris M
Re: Why have an (autologous) stem cell transplant?
How would anyone know if their overall survival rate has improved as they will NEVER know what would have happened if they chosen a different option?
That's what makes the decision so difficult. It's a gamble either way.
That's what makes the decision so difficult. It's a gamble either way.
-
cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Why have an (autologous) stem cell transplant?
Let me just say that cdirene is 100% correct. If you chose a course of action, as an individual, then you would never no for sure what would have occurred for you on the other course of action. There is study data on "populations" in randomized studies. That is the best we have.
Getting back to Tori's original question, the University of Chicago study from Dr. Jakubowiak has a somewhat aggressive approach, that uses Kyprolis, autologous stem cell transplantation, Kyprolis consolidation, and Kyprolis + Revlimid + dexamethasone maintenance, and so far has good result (80%+ CR).
That, I think, is the best argument out there for autologous stem cell transplantation. My opinion, however, is that over time, it will be learned that some patients would get good results on less aggressive treatment. Unfortunately, at this time, there is not a really good indicator as to if you have reached a good level of remission, and can forgo aggressive treatment that you might not need to pile on the treatments. Unfortunately the state of the art is not yet there.
Kudos to Tori for raising one of the most important questions out there. Lastly, to Tori, the new advances this last year, in my opinion, will for sure prolong overall survival. It will take a while, however, for those statistics to show that its the case. Hopefully, this is a potential source of some optimism.
Regards,
Getting back to Tori's original question, the University of Chicago study from Dr. Jakubowiak has a somewhat aggressive approach, that uses Kyprolis, autologous stem cell transplantation, Kyprolis consolidation, and Kyprolis + Revlimid + dexamethasone maintenance, and so far has good result (80%+ CR).
That, I think, is the best argument out there for autologous stem cell transplantation. My opinion, however, is that over time, it will be learned that some patients would get good results on less aggressive treatment. Unfortunately, at this time, there is not a really good indicator as to if you have reached a good level of remission, and can forgo aggressive treatment that you might not need to pile on the treatments. Unfortunately the state of the art is not yet there.
Kudos to Tori for raising one of the most important questions out there. Lastly, to Tori, the new advances this last year, in my opinion, will for sure prolong overall survival. It will take a while, however, for those statistics to show that its the case. Hopefully, this is a potential source of some optimism.
Regards,
-
JPC - Name: JPC
Re: Why have an (autologous) stem cell transplant?
I interpreted Tori's question a bit differently, but maybe I was wrong.
Yes, it's true that no individual patient will ever know what their overall survival time would have been if they have an auto stem cell transplant vs. only taking drugs, especially the new novel agents.
I thought Tori was asking this question of other transplant patients: In hindsight, would you still elect to have your transplant today – knowing what you will go through during the procedure and recovery – if you had originally been advised that your overall survival time would be the same just by taking other treatments? Did the benefits of the transplant (perhaps an extended drug-free time afterwards?) outweigh the difficulty of the transplant itself and the recovery time until you felt back to normal?
Tori, if this isn't what you intended, I apologize and will post a separate thread asking my question since my husband is going to have to make a decision on transplant relatively soon.
Best wishes,
Chris M.
Yes, it's true that no individual patient will ever know what their overall survival time would have been if they have an auto stem cell transplant vs. only taking drugs, especially the new novel agents.
I thought Tori was asking this question of other transplant patients: In hindsight, would you still elect to have your transplant today – knowing what you will go through during the procedure and recovery – if you had originally been advised that your overall survival time would be the same just by taking other treatments? Did the benefits of the transplant (perhaps an extended drug-free time afterwards?) outweigh the difficulty of the transplant itself and the recovery time until you felt back to normal?
Tori, if this isn't what you intended, I apologize and will post a separate thread asking my question since my husband is going to have to make a decision on transplant relatively soon.
Best wishes,
Chris M.
-
Chris M
Re: Why have an (autologous) stem cell transplant?
I understand the fear in autologous stem cell transplants. I also had that feeling once. I'll admit an auto stem cell transplant isn't for everyone. But I believe for those who are relatively healthy and young enough, it is worthy of consideration. My tandems weren't that bad and I'd do another if warranted. Everybody is different, but I'm going to do everything (being aggressive) possible until a cure is found.
Both of mine were outpatient, so it isn't that bad, I have felt worse on New Years Day and while in college.
Good luck. There really is no wrong decision. Just my opinion.
Both of mine were outpatient, so it isn't that bad, I have felt worse on New Years Day and while in college.
Good luck. There really is no wrong decision. Just my opinion.
-
blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Why have an (autologous) stem cell transplant?
It is an individual decision and is not easy. Some, as blueblood, have elected the more aggressive treatment going with a tandem. That is higher risk, but as he indicated, if you are young, you can probably handle it.
On the other hand, I am sure many of you read the news about Pat Killingworth in the "News" section of the Beacon. Pat had battled multiple myeloma for over 10 years. He was still relatively young (60) when he passed.
Pat was a trailblazer. He first started out, like me, without having done a stem cell transplant. He did what a lot of patients do, get the transplant at first relapse. That one did not work well, as the multiple myeloma came back. However, with drug therapy he held it at bay for another 4 years, when the drugs stopped working. The new drugs that were approved this year were just coming out. He considered those and a possible trial.
After consulting several multiple myeloma specialists he made a choice and went with the double autologous stem cell transplant in Iowa through Dr. Tricot. That was to be followed by aggressive consolidation therapy. Pat hoped that by being aggressive he could knock the multiple myeloma back and gain a few more years of treatment-free life.
The double stem cell transplant appeared to have worked, as he was declared to have reached a complete response (CR). However, the toll on his body caused him to pay the ultimate price. He succumbed to a rare form of blood disorder, the risk for which is elevated by stem cell transplants.
Being aggressive has a cost, sometimes it is the ultimate cost.
I am 7 years into my journey and may be looking at a relapse. I plan on tweaking my protocol and if that fails trying some of the newest drugs. I guess Pat's experience has put the ASCT off as a last rather than first choice for me.
On the other hand, I am sure many of you read the news about Pat Killingworth in the "News" section of the Beacon. Pat had battled multiple myeloma for over 10 years. He was still relatively young (60) when he passed.
Pat was a trailblazer. He first started out, like me, without having done a stem cell transplant. He did what a lot of patients do, get the transplant at first relapse. That one did not work well, as the multiple myeloma came back. However, with drug therapy he held it at bay for another 4 years, when the drugs stopped working. The new drugs that were approved this year were just coming out. He considered those and a possible trial.
After consulting several multiple myeloma specialists he made a choice and went with the double autologous stem cell transplant in Iowa through Dr. Tricot. That was to be followed by aggressive consolidation therapy. Pat hoped that by being aggressive he could knock the multiple myeloma back and gain a few more years of treatment-free life.
The double stem cell transplant appeared to have worked, as he was declared to have reached a complete response (CR). However, the toll on his body caused him to pay the ultimate price. He succumbed to a rare form of blood disorder, the risk for which is elevated by stem cell transplants.
Being aggressive has a cost, sometimes it is the ultimate cost.
I am 7 years into my journey and may be looking at a relapse. I plan on tweaking my protocol and if that fails trying some of the newest drugs. I guess Pat's experience has put the ASCT off as a last rather than first choice for me.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Why have an (autologous) stem cell transplant?
I agree that a tandem transplant brings with it much more risk. But I don't think a single auto transplant is all that risky for most people, at least if you're fairly strong when you do it. It's not a cakewalk, but for most people it's not life threatening.
My experience was the usual side effects of lost appetite, nausea, some throwing up, and tired feelings afterwards. I was able to walk 1-2 miles 3 weeks after the transplant, so I recovered fairly quickly.
Having said that, it took me about 4-5 months to feel as though I had recovered from it completely.
Some people take less time, some more.
My experience was the usual side effects of lost appetite, nausea, some throwing up, and tired feelings afterwards. I was able to walk 1-2 miles 3 weeks after the transplant, so I recovered fairly quickly.
Having said that, it took me about 4-5 months to feel as though I had recovered from it completely.
Some people take less time, some more.
-
DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Why have an (autologous) stem cell transplant?
Ron
I had a similar reaction to yours, given Pat Killingsworth's tragic experience with autologous transplants.
However, keep in mind that Pat did say that, while his initial transplant did not work, it did appear to resensitize his body to some of the drugs he had previously used, and he counted that as a benefit.
His death followed the much later tandem transplants he undertook recently, and even there it is guesswork to try to understand their relationship to the rare blood disorder that took his life.
As DallasGG points out, it would be a mistake to judge the risks of a single autologous transplant based on Pat's experience with tandem transplants.
To respond to Tori's original question, yes, the difference between progression free survival and overall survival is the difference between the time before myeloma begins to worsen (progress), and the remaining time you have to live. The studies to date, which are hard to compare for various reasons, appear to show a clear benefit for progression free survival for those undergoing autologous stem cell transplants, but not for overall survival. At least that is my understanding.
As has been said by others, the decision to go the autologous stem cell transplant route versus sticking to just drug therapy is a very difficult one that patients face, made much more difficult by the imperfect data now available, and the fact that myeloma experts differ on the question. Tori, there are many threads on the forum concerning this question, which may help you better understand if people would still choose the transplant given the benefit for progression-free survival versus overall survival, if you haven't already read them. Some would interpret the trade off to be one of better quality of life versus more life. But I also think that many made the choice based on their doctor's recommendation; it is still the preferred treatment among most experts.
Having said that, I would also want to repeat the fact that the tragedy that befell Pat is one data point, but not one that is directly germane to the question, given the different circumstances of Pat's case. Pat's death has profoundly shaken many of us who either knew Pat personally (I didn't), or else belonged to the much larger group who knew him through his writings and the years of support and advocacy he contributed to the myeloma community.
I had a similar reaction to yours, given Pat Killingsworth's tragic experience with autologous transplants.
However, keep in mind that Pat did say that, while his initial transplant did not work, it did appear to resensitize his body to some of the drugs he had previously used, and he counted that as a benefit.
His death followed the much later tandem transplants he undertook recently, and even there it is guesswork to try to understand their relationship to the rare blood disorder that took his life.
As DallasGG points out, it would be a mistake to judge the risks of a single autologous transplant based on Pat's experience with tandem transplants.
To respond to Tori's original question, yes, the difference between progression free survival and overall survival is the difference between the time before myeloma begins to worsen (progress), and the remaining time you have to live. The studies to date, which are hard to compare for various reasons, appear to show a clear benefit for progression free survival for those undergoing autologous stem cell transplants, but not for overall survival. At least that is my understanding.
As has been said by others, the decision to go the autologous stem cell transplant route versus sticking to just drug therapy is a very difficult one that patients face, made much more difficult by the imperfect data now available, and the fact that myeloma experts differ on the question. Tori, there are many threads on the forum concerning this question, which may help you better understand if people would still choose the transplant given the benefit for progression-free survival versus overall survival, if you haven't already read them. Some would interpret the trade off to be one of better quality of life versus more life. But I also think that many made the choice based on their doctor's recommendation; it is still the preferred treatment among most experts.
Having said that, I would also want to repeat the fact that the tragedy that befell Pat is one data point, but not one that is directly germane to the question, given the different circumstances of Pat's case. Pat's death has profoundly shaken many of us who either knew Pat personally (I didn't), or else belonged to the much larger group who knew him through his writings and the years of support and advocacy he contributed to the myeloma community.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
23 posts
• Page 1 of 3 • 1, 2, 3
Return to Treatments & Side Effects