I was wondering how many people who got a stem cell transplant (SCT) were given ample opportunity to consider a variety of treatment modalities before SCT.
As a secondary question: How many people felt as if they were being pushed into SCT?
Thanks much. I am in the midst of the dilemma myself at this time.
Forums
Re: Did you feel pushed into a stem cell transplant?
Maurice,
Welcome to the forum.
It's a little difficult to answer your first question because we don't know how "dire" your current diagnosis and situation is, including the extent of any organ damage and your cytogenetics. Depending on how severe one's situation is, doctors will obviously sometimes suggest starting treatment immediately to prevent any further damage to one's body.
As far as feeling "pushed" into an SCT, there are clearly some institutions and doctors that consider an SCT to be the only viable treatment route for multiple myeloma ... period. It also depends on where you live in the world and what a given country's treatment policy is regarding multiple myeloma.
I am only smoldering in the USA and I met with two doctors / institutions that would only outline an SCT as a future treatment option. I then went on to get some additional opinions and found out early on that specialist's philosophies vary greatly on this topic.
The opinions ranged from those that would never consider an SCT under any circumstances for their patients to those that would only consider an SCT. And then I found those doctors that would consider a delayed SCT, or would be "OK" with a drug-only approach (and they had patients in their practice that were doing early SCTs, delayed SCTs or no SCTs at all).
So, it really depends on which specialist (and institution) you talk to. That why I think it's important to get at least one additional opinion before undertaking a major decision like an SCT or a drug-only approach.
Hope this helps.
Welcome to the forum.
It's a little difficult to answer your first question because we don't know how "dire" your current diagnosis and situation is, including the extent of any organ damage and your cytogenetics. Depending on how severe one's situation is, doctors will obviously sometimes suggest starting treatment immediately to prevent any further damage to one's body.
As far as feeling "pushed" into an SCT, there are clearly some institutions and doctors that consider an SCT to be the only viable treatment route for multiple myeloma ... period. It also depends on where you live in the world and what a given country's treatment policy is regarding multiple myeloma.
I am only smoldering in the USA and I met with two doctors / institutions that would only outline an SCT as a future treatment option. I then went on to get some additional opinions and found out early on that specialist's philosophies vary greatly on this topic.
The opinions ranged from those that would never consider an SCT under any circumstances for their patients to those that would only consider an SCT. And then I found those doctors that would consider a delayed SCT, or would be "OK" with a drug-only approach (and they had patients in their practice that were doing early SCTs, delayed SCTs or no SCTs at all).
So, it really depends on which specialist (and institution) you talk to. That why I think it's important to get at least one additional opinion before undertaking a major decision like an SCT or a drug-only approach.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Did you feel pushed into a stem cell transplant?
Maurice,
Multibilly always has some good advice and great information. I just want to add some food for thought.
My initial diagnosis, then the treatment plan and a visit with a myeloma specialist, all happened in about a month. Due to insurance coverage and contracts, some things took a little longer.
After taking Revlimid and dex for about 3 months, my numbers had dropped significantly. I was really happy when my myeloma specialist told me that she thought I could just stay on that treatment for several years before having a transplant. Not pushing one at all.
Due to several family commitments, it gave me the time I needed before transplant. But, as I have posted before, I had an Issue with the Revlimid and had to have my treatment changed to Velcade and dex.
That changed how my oncologist and SCT doctor now feel about waiting several years as before. They now want me to have the SCT sooner than later.
In my case, I don't feel pushed, but wished that I could have stayed on track to wait for the SCT for several years.
Castaway
Multibilly always has some good advice and great information. I just want to add some food for thought.
My initial diagnosis, then the treatment plan and a visit with a myeloma specialist, all happened in about a month. Due to insurance coverage and contracts, some things took a little longer.
After taking Revlimid and dex for about 3 months, my numbers had dropped significantly. I was really happy when my myeloma specialist told me that she thought I could just stay on that treatment for several years before having a transplant. Not pushing one at all.
Due to several family commitments, it gave me the time I needed before transplant. But, as I have posted before, I had an Issue with the Revlimid and had to have my treatment changed to Velcade and dex.
That changed how my oncologist and SCT doctor now feel about waiting several years as before. They now want me to have the SCT sooner than later.
In my case, I don't feel pushed, but wished that I could have stayed on track to wait for the SCT for several years.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Did you feel pushed into a stem cell transplant?
Castaway, How did your going off Revlimid and having to take Velcade and dexamethasone instead decide for your doctors that you should go forward with a stem cell transplant? Can you clarify this for me?
Multibilly, can you provide the names of some of the institutions and/or specialists who are OK with drug maintenance as opposed to a stem cell transplant? I know from some of your past postings that Dr. Berenson from California does not necessarily favor stem cell transplants. Are there other specialists of equal stature who share his view? I ask because my own specialist ultimately persuaded me not to go the SCT route even though I am of intermediate risk. I have not been able to find anyone else who would validate that approach, but then I may not be looking in the right places.
Multibilly, can you provide the names of some of the institutions and/or specialists who are OK with drug maintenance as opposed to a stem cell transplant? I know from some of your past postings that Dr. Berenson from California does not necessarily favor stem cell transplants. Are there other specialists of equal stature who share his view? I ask because my own specialist ultimately persuaded me not to go the SCT route even though I am of intermediate risk. I have not been able to find anyone else who would validate that approach, but then I may not be looking in the right places.
Re: Did you feel pushed into a stem cell transplant?
Mrozdav,
It's not hard to find specialists that have made public comments that endorse a delayed transplant approach.
Dr. Landgen is one specialist that immediately comes to mind. See his comments in this article
"Experts Disagree on Role of Transplant in Myeloma," Clinical Oncology News, Aug 2013 (full text of article)
And then Ken Anderson at Dana Farber made the argument below for delayed transplants:
"Experts Debate the Need for Upfront vs Late Stem Cell Transplant in Multiple Myeloma," The ASCO Post, Nov 1, 2014 (full text of article)
I've seen presentations by Dr. Mikhael of the Mayo Clinic where he has taken a position similar to Dr. Anderson's. Also, even Dr. Giralt of Memorial-Sloan Kettering, who I always considered to be pretty firmly on the side of recommending up-front transplants, has said that he's willing to consider delayed transplantation in low-risk patients who have had deep responses to their initial therapy.
I'm sure you can find other specialists that have expressed similar views.
But I don't think I've ever found a multiple myeloma specialist quite as adamant as Dr. Berenson about never considering a transplant for any patient under any circumstance.
A lot of us will be looking forward to the DETERMINATION (IFM-DFCI) trial results to see how the data compares between those that opt for upfront transplant versus those that opt for a delayed transplant while utilizing modern novel agents.
It's not hard to find specialists that have made public comments that endorse a delayed transplant approach.
Dr. Landgen is one specialist that immediately comes to mind. See his comments in this article
"Experts Disagree on Role of Transplant in Myeloma," Clinical Oncology News, Aug 2013 (full text of article)
And then Ken Anderson at Dana Farber made the argument below for delayed transplants:
"Experts Debate the Need for Upfront vs Late Stem Cell Transplant in Multiple Myeloma," The ASCO Post, Nov 1, 2014 (full text of article)
I've seen presentations by Dr. Mikhael of the Mayo Clinic where he has taken a position similar to Dr. Anderson's. Also, even Dr. Giralt of Memorial-Sloan Kettering, who I always considered to be pretty firmly on the side of recommending up-front transplants, has said that he's willing to consider delayed transplantation in low-risk patients who have had deep responses to their initial therapy.
I'm sure you can find other specialists that have expressed similar views.
But I don't think I've ever found a multiple myeloma specialist quite as adamant as Dr. Berenson about never considering a transplant for any patient under any circumstance.
A lot of us will be looking forward to the DETERMINATION (IFM-DFCI) trial results to see how the data compares between those that opt for upfront transplant versus those that opt for a delayed transplant while utilizing modern novel agents.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Did you feel pushed into a stem cell transplant?
I was not pushed into it. At the time, it felt like it was me more than my oncologist who brought up the SCT option. I felt I could have declined with little pressure to do otherwise if I wanted to. I was in a very good partial remission before my SCT, though. If I had not been, maybe my oncologist would have been pushing a SCT strongly. I think given my status at the time he also would have been good with waiting a while before SCT, which may be while he seemed so neutral on it.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Did you feel pushed into a stem cell transplant?
Maurice,
To answer your question about changing from Revlimid to Velcade and why my SCT was moved up as far as time:
For some reason, I started having neuropathy issues from the Velcade. Not terrible, but enough to start using Lyrica, which is like a wonder drug for me, taking all the related burning and stinging symptoms of neuropathy away completely (it's only on the top of my feet and toes).
Now both my oncologist and SCT specialist are concerned that the neuropathy could get worse and they don't want that to happen due to extended use from Velcade.
I was on the Velcade treatment schedule of days 1, 4, 8 & 11. Now that I have a maintenance schedule of Velcade, my neuropathy doesn't seem as bad. So I am now wondering myself as to how long I could go on Velcade without doing the SCT.
My biggest concern is will my complete response fall off and numbers start to rise after extended use of Velcade when the myeloma is not driven back by Velcade anymore.
So much to think about. It seems like having the SCT sooner and when I am at a complete response makes more sense.
Castaway
To answer your question about changing from Revlimid to Velcade and why my SCT was moved up as far as time:
For some reason, I started having neuropathy issues from the Velcade. Not terrible, but enough to start using Lyrica, which is like a wonder drug for me, taking all the related burning and stinging symptoms of neuropathy away completely (it's only on the top of my feet and toes).
Now both my oncologist and SCT specialist are concerned that the neuropathy could get worse and they don't want that to happen due to extended use from Velcade.
I was on the Velcade treatment schedule of days 1, 4, 8 & 11. Now that I have a maintenance schedule of Velcade, my neuropathy doesn't seem as bad. So I am now wondering myself as to how long I could go on Velcade without doing the SCT.
My biggest concern is will my complete response fall off and numbers start to rise after extended use of Velcade when the myeloma is not driven back by Velcade anymore.
So much to think about. It seems like having the SCT sooner and when I am at a complete response makes more sense.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Did you feel pushed into a stem cell transplant?
I wasn't pushed into having an ASCT after having Velcade / dex and getting into a very good remission. However, the transplant doctor we talked with suggested that I could gain more time in remission by having the auto transplant, which proved to be true (I now know that not everyone experiences a lengthened remission.)
I was really frightened by the whole concept of having the transplant,, but since the success rate in terms of mortality is so high, I did decide to try it. That was my decision, which in retrospect worked well. I had to really trust the whole medical team that guided me through that time!
I was really frightened by the whole concept of having the transplant,, but since the success rate in terms of mortality is so high, I did decide to try it. That was my decision, which in retrospect worked well. I had to really trust the whole medical team that guided me through that time!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Did you feel pushed into a stem cell transplant?
Multibilly: Thank you for responding with the citations to articles. They are definitely useful. My concerns arise from the fact that I have t(4;14) and my specialist quite vigorously told me that she did not believe that I should proceed to a SCT. Moreover, having just turned 70 years of age, I cannot help but be aware that a delayed transplant will be more problematic in two or three years because I am bound to develop health issues as I get older – issues which are largely non-existent just now. So, even though a delayed transplant has been left as a viable option, as a practical matter, I may have closed the door on that by not doing an upfront SCT.
In a separate posting, I asked to hear from other intermediate / high-risk multiple myeloma patients who had NOT opted for SCT upfront. So far, no one has responded, and I gather from that that there is practically no one among forum participants with t(4;14) who has not chosen to get a SCT if they were eligible for one after induction. Drs. Berenson, Anderson, and my own specialist, it seems, are in a decided minority. I guess we just have to await the outcome of the latest trials to see whether they are correct or not in their thinking.
In a separate posting, I asked to hear from other intermediate / high-risk multiple myeloma patients who had NOT opted for SCT upfront. So far, no one has responded, and I gather from that that there is practically no one among forum participants with t(4;14) who has not chosen to get a SCT if they were eligible for one after induction. Drs. Berenson, Anderson, and my own specialist, it seems, are in a decided minority. I guess we just have to await the outcome of the latest trials to see whether they are correct or not in their thinking.
Re: Did you feel pushed into a stem cell transplant?
Age does make a difference. The general practice is to recommend SCT to people in their 50s but, as they age, due to the ability of the body to recover, back off SCT for older patients.
I did not have one and was 56 at the time of diagnosis. However, most who were diagnosed at my age opt for the procedure.
There is no right or wrong answer today due to the ability of combination treatment with novel agents to attain similar results without the toll that an SCT puts the body through.
Ron
I did not have one and was 56 at the time of diagnosis. However, most who were diagnosed at my age opt for the procedure.
There is no right or wrong answer today due to the ability of combination treatment with novel agents to attain similar results without the toll that an SCT puts the body through.
Ron
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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
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