My husband was diagnosed in March 2015 at the age of 64. It was a nasty shock and a nasty couple of months in and out of the hospital with high calcium, blood infusions, infections, etc.
Now we are given the option of a stem cell transplant. It sounds pretty much like a crap shoot.
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Re: Should my husband have a stem cell transplant?
There is no right answer for everyone. I found this long thread useful when trying to come to a decision:
"How did you decide whether to have a SCT or not?" (started Dec 31, 2014)
"How did you decide whether to have a SCT or not?" (started Dec 31, 2014)
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Should my husband have a stem cell transplant?
I agree there is no simple answer on whether a stem cell transplant is a good idea. I am not a medical person, but my 2nd oncologist was prompting me to get a stem cell transplant when I was seeing good results from the maintenance therapy. He said I could buy more time. Fortunately, my induction went well with Velcade / dex given to me by my 1st oncologist.
Now 6 years later, I am almost 61 and have not yet had a transplant and my 1st oncologist indicated to me that the research now seems to indicate that a good response to maintenance therapy may not require a transplant.
For myself, I was leery of getting a transplant because of a risk of causing a chromosomal change as a result of the use of melphalan. A more aggressive cancer coming back after the remission wasn't something I wanted. I found that buried in the research and, honestly, don't know how significant that danger really is. For me, I requested that the doctor let me try different maintenance drugs until I found something that works. As a last resort then I would have then gone ahead with the transplant if the maintenance didn't work.
Good luck to you and your husband!
Now 6 years later, I am almost 61 and have not yet had a transplant and my 1st oncologist indicated to me that the research now seems to indicate that a good response to maintenance therapy may not require a transplant.
For myself, I was leery of getting a transplant because of a risk of causing a chromosomal change as a result of the use of melphalan. A more aggressive cancer coming back after the remission wasn't something I wanted. I found that buried in the research and, honestly, don't know how significant that danger really is. For me, I requested that the doctor let me try different maintenance drugs until I found something that works. As a last resort then I would have then gone ahead with the transplant if the maintenance didn't work.
Good luck to you and your husband!
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smithwcs - Name: Will
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Apr 2009
- Age at diagnosis: 54
Re: Should my husband have a stem cell transplant?
Hi Sally Jo,
You've asked one of the two $64M questions! The other is "Should I do maintenance therapy and, if so, for how long?"
There are some data and lots of opinions / interpretations of the data on both sides of the coin for both of these questions.
I strongly advise reading the thread that Irene suggested. It's a long thread but has a variety of views on the question, and it's fairly recent, so I don't think there's anything all that new that would substantially change anything anyone said in the thread.
One other thing you and your husband should consider doing is getting a second (or third) opinion from myeloma specialist(s).
Best wishes to your husband, whichever way the decision goes for him.
Mike
You've asked one of the two $64M questions! The other is "Should I do maintenance therapy and, if so, for how long?"
There are some data and lots of opinions / interpretations of the data on both sides of the coin for both of these questions.
I strongly advise reading the thread that Irene suggested. It's a long thread but has a variety of views on the question, and it's fairly recent, so I don't think there's anything all that new that would substantially change anything anyone said in the thread.
One other thing you and your husband should consider doing is getting a second (or third) opinion from myeloma specialist(s).
Best wishes to your husband, whichever way the decision goes for him.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Should my husband have a stem cell transplant?
You write
May I ask, what kind of information and coaching did you receive from your doctor and other health professionals during the process to make you come up with this conclusion?
Now we are given the option of a stem cell transplant. It sounds pretty much like a crap shoot.
May I ask, what kind of information and coaching did you receive from your doctor and other health professionals during the process to make you come up with this conclusion?
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Should my husband have a stem cell transplant?
Hi Sally Jo,
That is a complicated question and probably all of the research data are not in yet to have a totally scientific opinion. In my experience, my transplant in 2010 did help me with a longer remission than otherwise might have occurred, I think. When I took induction chemo, it was with Velcade plus dex. This is not what many folks take nowadays, tho. The drug combo could now have included Cytoxan, an alkylating agent, or in some places, two 'novel' agents, such as Revlimid plus Velcade.
So to start off, I was not treated with as strong a combo of drugs as is used now, I think. After about 20 months of treatment (the induction chemo, the stem cell transplant time, and then a year of Revlimid at a low dose), I got into a remission and did not take any maintenance treatment for 3 1/2 years. At that time in Canada, 'maintenance treatment' was not yet approved. The concept of maintenance treatment had to be back up by scientific studies proving that it was useful.
At any rate, after that I did relapse, and have been on treatment with Revlimid / dex since then. In my case, I am grateful that I did have the stem cell transplant, for I think that it has aided to keep me healthier than otherwise without it.
That is a complicated question and probably all of the research data are not in yet to have a totally scientific opinion. In my experience, my transplant in 2010 did help me with a longer remission than otherwise might have occurred, I think. When I took induction chemo, it was with Velcade plus dex. This is not what many folks take nowadays, tho. The drug combo could now have included Cytoxan, an alkylating agent, or in some places, two 'novel' agents, such as Revlimid plus Velcade.
So to start off, I was not treated with as strong a combo of drugs as is used now, I think. After about 20 months of treatment (the induction chemo, the stem cell transplant time, and then a year of Revlimid at a low dose), I got into a remission and did not take any maintenance treatment for 3 1/2 years. At that time in Canada, 'maintenance treatment' was not yet approved. The concept of maintenance treatment had to be back up by scientific studies proving that it was useful.
At any rate, after that I did relapse, and have been on treatment with Revlimid / dex since then. In my case, I am grateful that I did have the stem cell transplant, for I think that it has aided to keep me healthier than otherwise without it.
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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
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