Readers of the Beacon forums and other online resources know well the ongoing debate of whether it is a good idea to go forward with a stem cell transplant following a first round of successful induction therapy.
The debate follows familiar lines, with the pro-transplant group pointing to at least one 2011 study indicating longer survival and the anti-transplant proponents noting that novel drugs now used for initial therapy, and more in the pipeline, support the view that transplant is an unnecessary assault on the body. The later view is further supported by a recent retrospective study concluding that there is no difference in outcome from delayed vs. early transplant.
Still, outside of anecdotal reports of long-term survival on the part of persons who have eschewed transplant, it is fair to say that niether side can lay claim to conclusive, or even very strong, proof that one or the other is clearly better.
So those of us who are faced with the decision now must make it without a clear path to follow. This forces us to weigh the risks and benefits. We know that transplant has a very small mortality rate, somewhere in the 1% range. And there certainly is evidence to support the conclusion that it MAY prolong survival.
So the question for me then becomes: Why not?
Now I know that it is not a pleasant thing to go through and it certainly can very taxing and unpleasant. But the question for me is what are the longer term negative impacts? From what I have read here and elsewhere, the overwhelming majority of those who go through it, and who have had a strong response to initial treatment and no other health issues, recover very well and can go on with their lives without significant restrictions.
I also know that delaying transplant can allow one to preserve the hope that new treatments will prove at least as efficacious as transplant and eliminate the need to undergo the high dose chemotherpay that is part of the process. But given that delaying transplant can put one in a position of no longer being eligible is it worth the risk entailed in waiting?
Anxious to hear any reactions to this analysis and where I may have gotten it wrong.
Forums
Re: Stem cell transplant - why or why not?
This is going to be an ... interesting ... discussion.
Just out of curiosity, is this,
https://myelomabeacon.org/news/2013/08/16/stem-cell-transplant-timing-multiple-myeloma/
the study that you were referring to when you write that about a "recent retrospective study concluding that there is no difference in outcome from delayed vs. early transplant"?
If so, I think it's worth mentioning that it's not clear the actual results of the study support that intepretation.
I mean, look at the overall survival curves at the end of the article. Given those curves, which of the two groups would you prefer to be in?
Just out of curiosity, is this,
https://myelomabeacon.org/news/2013/08/16/stem-cell-transplant-timing-multiple-myeloma/
the study that you were referring to when you write that about a "recent retrospective study concluding that there is no difference in outcome from delayed vs. early transplant"?
If so, I think it's worth mentioning that it's not clear the actual results of the study support that intepretation.
I mean, look at the overall survival curves at the end of the article. Given those curves, which of the two groups would you prefer to be in?
Re: Stem cell transplant - why or why not?
Couple of points to consider. You do lose a good three months of your life going through the process and recovering. There is a good three weeks where you are very sick. You can not work during the treatment which can be a financial burden to those that are not currently retired. There is also the need for a full time care giver or a lengthy stay in the hospital while your go through treatment. In my case both my wife and myself were out of work for two months while I underwent the transplant.
In my particular case the numbers from the blood work showed no change 90 day post transplant to my numbers prior to transplant. Am on maintenance Revlimid for the last 10 months and my numbers have slowly crept down.
I'm in the camp that says the misery was not worth the results. Read some of the Mayo articles and you can see where a large percentage of their patients are not doing transplants.
Having said all the above I can tell you that I recovered with no issues. It was a tough couple of months but I had no long lasting side effects like neuropathy that so many people have reported after transplant.
Good luck to you, Jerry.
In my particular case the numbers from the blood work showed no change 90 day post transplant to my numbers prior to transplant. Am on maintenance Revlimid for the last 10 months and my numbers have slowly crept down.
I'm in the camp that says the misery was not worth the results. Read some of the Mayo articles and you can see where a large percentage of their patients are not doing transplants.
Having said all the above I can tell you that I recovered with no issues. It was a tough couple of months but I had no long lasting side effects like neuropathy that so many people have reported after transplant.
Good luck to you, Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Stem cell transplant - why or why not?
I am in a similar situation now that I am finishing induction therapy. My situation may be a little different because i am a non secretory and have no chromosomal abnormalities. But the question that I have not found an answer to is: what does it do other than further lowering the the percentage of cancerous plasma cells in the blood? If I am all ready less than half a percent will it lower it more or is there something else that goes on with the stem cells that provides more resistance to prevent relapse. Would someone knowledgeable please provide more detailed information about what its other benefits may be.
Thanks.
Paul Jorgensen
Annapolis MD
Thanks.
Paul JorgensenAnnapolis MD
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Pjorg45 - Name: Paul Jorgensen
- When were you/they diagnosed?: May 1013
- Age at diagnosis: 68
Re: Stem cell transplant - why or why not?
To me the decision is really a lifestyle choice. It depends on your tolerance for the alternative treatment drugs, your insurance coverage, how your job is affected by disability, your age, family situation and responsibilities. Sometimes it works well and you get years of treatment free almost normal life. Often it doesn't work out that way.
For me, it worked out well. I was too young to retire when I was diagnosed at 51. I had an employer with excellent policies for the temporarily disabled that kept me at full salary for six months and insurance that fully paid for the procedure. I had used up my deductible and hit my out-of-pocket maximum with the induction therapy. I ended up with nearly 8 years treatment free, which was long enough for my children to graduate and for me to retire.
I balanced that against some pretty nasty side effects for the drugs that were available at the time. The 200 mg of Thalidomide wiped me out completely and peripheral neuropathy was increasing. The transplant jumped my need for treatment forward in time where there are a lot of new drugs, all of which are likely to work for me when I eventually need them.
I am glad that I did the transplant first, when my body and immunity were strong enough to take it and am doing the drugs later. I also am comfortable with the "less is more" philosophy where you do drugs long enough for a remission and then shift back to watchful waiting until the need again arises. Not everyone can do it that way either, but my disease doesn't seem to be particularly aggressive.
There has been more retrospective studies about who is or is not likely to benefit from a transplant and that should be helpful in figuring the benefit of such a decision. I think they will find that there is no single right answer on this, because multiple myeloma is such an individual disease. One thing about there not being a clear answer is that you don't have to regret whatever decision you make on lifestyle grounds.
For me, it worked out well. I was too young to retire when I was diagnosed at 51. I had an employer with excellent policies for the temporarily disabled that kept me at full salary for six months and insurance that fully paid for the procedure. I had used up my deductible and hit my out-of-pocket maximum with the induction therapy. I ended up with nearly 8 years treatment free, which was long enough for my children to graduate and for me to retire.
I balanced that against some pretty nasty side effects for the drugs that were available at the time. The 200 mg of Thalidomide wiped me out completely and peripheral neuropathy was increasing. The transplant jumped my need for treatment forward in time where there are a lot of new drugs, all of which are likely to work for me when I eventually need them.
I am glad that I did the transplant first, when my body and immunity were strong enough to take it and am doing the drugs later. I also am comfortable with the "less is more" philosophy where you do drugs long enough for a remission and then shift back to watchful waiting until the need again arises. Not everyone can do it that way either, but my disease doesn't seem to be particularly aggressive.
There has been more retrospective studies about who is or is not likely to benefit from a transplant and that should be helpful in figuring the benefit of such a decision. I think they will find that there is no single right answer on this, because multiple myeloma is such an individual disease. One thing about there not being a clear answer is that you don't have to regret whatever decision you make on lifestyle grounds.
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JanInWloo - When were you/they diagnosed?: 2005
- Age at diagnosis: 51
Re: Stem cell transplant - why or why not?
I am going thru the same dilemma. I was diagnosed 8 years ago at age 19 and was smoldering for all of that time since til April 2012 when i started induction chemo. Ive been on either RVD/RCD since then and about to be in a complete remission. Im at 0.35 M-spike. Less is more is my philosophy and doctors. Ive never had a SCT and plan on pushing it back as long as possible. Tentatively when i hit a CR i will go on maintenance Rev only with occasional Velcade maybe. Im scared since im so young that using only the chemo so far will eventually stop working but my stem cells are ready for use at any point and my doctor and i are comfortable with taking the wait and see approach for the big ammo of the SCT. Ideally ill never need it but i know thats not possible. More studies need to be looked at using my situation as the protocol. Young patients who decide against SCT and choose quality of life and what not. Unfortunately there is no right or wrong answer but i am very comfortable doing the new school way of thought versus using the traditional way. Hell if i went the traditional route id have used a SCT when i was 19 that wouldve been completely useless. Im fine up to this point and have never needed it. I thank god that my local oncologist is a big believer in not using all ammo up front and spreading it out over my entire life span. God speed
Mark
Mark
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Barneasada - Name: Mark
- When were you/they diagnosed?: Jan 2007
- Age at diagnosis: 19
Re: Stem cell transplant - why or why not?
Really good answers from everyone. JanInWloo mentioned the "business/personal side" of the decision, which is important as well as the medical side. I was offered an upfront allo transplant and what I tried to do was try and think about the downside and the upside of doing the procedure. The potential downside was having GVHD (which is not a complication of the other therapies) and the upside of the longer remission/curative potential of the procedure. I thought I would feel worse about relapsing knowing that I gave up the opportunity for a chance to be cured as opposed to having a complication from the transplant. I had no problem with GVHD and I am doing very well a little over 2.5 years out from the procedure. Fortunately for me the potential downside from the procedure never really materialized.
There indeed is excellent QOL after high dose therapy. To give you an idea, last month I spent no time at any medical provider and I took no pharmaceutical drugs. This month I only went to the drug store for a flu shoot. Other than looking at the Beacon now I do not think there is anything different about my day than if I had never been diagnosed with cancer. I go once every 3 months for Zometa and doctors visit. Fortunately I was in a financial position to not work for a few months and had excellent insurance that paid for the allo. Not everyone is in a position to do that.
I think the most important part of the decision is what you are comfortable with. As you mentioned there is no study that shows a definitive overall survival advantage to doing it upfront or at relapse. I would not base my treatment decision based on "hope" for new therapies that may never materialize. I also think it would matter if you are planning on going "drug free" (if possible) after the transplant. As JanInWloo mentioned the "drug holiday" period is typically a time of excellent QOL. Patients on continuous therapy typically have more QOL issues in the long term while someone that does an auto has more QOL issues in the short term. I decided to go with less QOL in the short term in exchange for excellent QOL I currently enjoy..
Good luck with the decision! Hopefully in the future there will be studies that give patients a better roadmap with respect to which therapies would be most beneficial for them.
There indeed is excellent QOL after high dose therapy. To give you an idea, last month I spent no time at any medical provider and I took no pharmaceutical drugs. This month I only went to the drug store for a flu shoot. Other than looking at the Beacon now I do not think there is anything different about my day than if I had never been diagnosed with cancer. I go once every 3 months for Zometa and doctors visit. Fortunately I was in a financial position to not work for a few months and had excellent insurance that paid for the allo. Not everyone is in a position to do that.
I think the most important part of the decision is what you are comfortable with. As you mentioned there is no study that shows a definitive overall survival advantage to doing it upfront or at relapse. I would not base my treatment decision based on "hope" for new therapies that may never materialize. I also think it would matter if you are planning on going "drug free" (if possible) after the transplant. As JanInWloo mentioned the "drug holiday" period is typically a time of excellent QOL. Patients on continuous therapy typically have more QOL issues in the long term while someone that does an auto has more QOL issues in the short term. I decided to go with less QOL in the short term in exchange for excellent QOL I currently enjoy..
Good luck with the decision! Hopefully in the future there will be studies that give patients a better roadmap with respect to which therapies would be most beneficial for them.
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Mark
Re: Stem cell transplant - why or why not?
I had a ASCT in December of 2011. I don't want to scare anyone, but I had an awful experience. I developed a severe case of oral and GI mucositis. I could not eat for 6 weeks (not that I wanted to). Also, could not brush my teeth. The transplant (high dose chemo - melphalan) wiped me out. It has been almost 2 years and I about one third the man I used to be. They say you will feel better in 4-6 months, but I have not and I think you just adjust to a New Normal.
Since I could not brush my teeth, of course, I had plenty of cavities when I got home, which my dentist tried to correct, but after 14 months I had to get 4 root canals. (Note : because of the Revlimid and other medicines I take, I have continual Dry Mouth, which also causes cavities).
Then since I was on Zometa and could not afford 4 crowns, I had to have my 4 teeth ground down to the gumline with permanent fillings placed on each at the gumline, because I could not have them pulled because of the Zometa, which would have caused ONJ.
Now I know people who were at the transplant center who went through the same as me and they had no problems, so don't take my experience as if this happens to all.
So if I had to do it again, I would not, but we multiple myeloma patients must battle on and do what it takes to extend our lives. My best advice would be not to have a transplant unless other options have been exhausted or if you will be nearing the age where transplant makes you not eligible.
Since I could not brush my teeth, of course, I had plenty of cavities when I got home, which my dentist tried to correct, but after 14 months I had to get 4 root canals. (Note : because of the Revlimid and other medicines I take, I have continual Dry Mouth, which also causes cavities).
Then since I was on Zometa and could not afford 4 crowns, I had to have my 4 teeth ground down to the gumline with permanent fillings placed on each at the gumline, because I could not have them pulled because of the Zometa, which would have caused ONJ.
Now I know people who were at the transplant center who went through the same as me and they had no problems, so don't take my experience as if this happens to all.
So if I had to do it again, I would not, but we multiple myeloma patients must battle on and do what it takes to extend our lives. My best advice would be not to have a transplant unless other options have been exhausted or if you will be nearing the age where transplant makes you not eligible.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Stem cell transplant - why or why not?
Diagnosed 1/10/10 non- secretory multiple myeloma Hackensack Medical Center.
Dr. Vesole told me after exam in 2/10 I was a strong candidate for stem cell transplant, after 2 weeks of radiation and 5 months of RVD ,time was set for 7/9/10
First transplant 22 million cells collected over 2 day period after getting Neupogen injections over a 2 week period, strange feeling in body and chest area after 8 hrs of Melphalan and I was ready to go.
First transplant was as out patient staying in apt. Close to hospital with my wife,stomach discomfort irritable and lots of weakness.nausea the whole stomach roller coaster.10 days later sent home to rebuild body and psyche
Second transplant 12/10/10 in hospital 16 days extremely difficult psychology and physically got thru it when I got home I looked like an alien from outer space. Slowly got stronger with strong support from my wife and friends.
Going for my ninth Pet Scan on 10/31/13, hopefully all is quiet in my body
No meds being taken for multiple myeloma at this time very physically active retired and relaxed
64 years old and looking forward to more good years
Stay Strong
Dr. Vesole told me after exam in 2/10 I was a strong candidate for stem cell transplant, after 2 weeks of radiation and 5 months of RVD ,time was set for 7/9/10
First transplant 22 million cells collected over 2 day period after getting Neupogen injections over a 2 week period, strange feeling in body and chest area after 8 hrs of Melphalan and I was ready to go.
First transplant was as out patient staying in apt. Close to hospital with my wife,stomach discomfort irritable and lots of weakness.nausea the whole stomach roller coaster.10 days later sent home to rebuild body and psyche
Second transplant 12/10/10 in hospital 16 days extremely difficult psychology and physically got thru it when I got home I looked like an alien from outer space. Slowly got stronger with strong support from my wife and friends.
Going for my ninth Pet Scan on 10/31/13, hopefully all is quiet in my body
No meds being taken for multiple myeloma at this time very physically active retired and relaxed
64 years old and looking forward to more good years
Stay Strong
Re: Stem cell transplant - why or why not?
The consensus among myeloma specialists, from what I've heard, seems to be to be that transplant is the way to go for most and the evidence is now very strong that maintnence therapy improves survival.
My own doctor is strongly in favor of early transplant. I am scheduled for a second opinion at Hopkins where, I am told, they are now rarely doing transplants except as part of clinical trials. It will be interesting to hear their perspective.
My own doctor is strongly in favor of early transplant. I am scheduled for a second opinion at Hopkins where, I am told, they are now rarely doing transplants except as part of clinical trials. It will be interesting to hear their perspective.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
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