Hello all,
I am happy to report that my doctor told me yesterday that I am in remission. This was the result of a marrow biopsy. "No detectable cancer" were his words.
I am stage 3 and the doctors say it's aggressive. I am currently 61 with no other health issues.
I had less than 3 months of treatment with Velcade, Revlimid and steroids and some early radiation. The doctor said I could stay in remission for up to two years and, with the stem cell transplant, I could stay in remission for 3.5 years or so. Of course these are not absolute times.
We were getting ready to do a stem cell transplant but after this news and weighing the risk involved with the transplant, I'm having second thoughts. I wish that I could just harvest my stem cells at this point but not actually do the transplant procedure. The doctor says that insurance companies won't do that.
My next step is to do major organ testing to see if there are any unknown issues to doing the transplant procedure. I plan on doing the test.
Two months ago I would have proceeded with the transplant without question, but now, being in remission, I'm just not sure it's worth the risk. I'm leaning on not doing the transplant at this time.
This is a tough decision and I'm looking for as much input on this as possible. Any thoughts?
Forums
Re: Stem cell transplant or not?
Congrats on the remission, Winkdot.
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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: Stem cell transplant or not?
HI Winkdot,
It's not true that ALL insurance companies won't allow you to harvest and store stem cells for a future transplant. It just depends on your specific insurance company's policy. So, I would suggest calling your insurance company and/or reviewing their detailed certificate of coverage. It's also not mandatory that one collect stem cells up front in the treatment process. Most patients can wait till a later time (relapse) and also successfully harvest at that time.
It is also a bit curious that your doctor said "could stay in remission for up to two years and with the stem cell transplant I could stay in remission for 3.5 years or so. Of course these are not absolute times". Even if the doctor isn't talking in absolute terms, there is no way he could even know ballpark estimates for your particular situation. I'm going to guess that your doctor works in a facility that does transplants?
There are a lot of threads on this site regarding the pros and cons of early versus delayed versus no transplant whatsoever. Here are a sample of some threads you might consider reading through.
"Experiences with not doing an early stem cell transplant" (Jan 29, 2015)
"Stem cell transplant or not?" (Nov 8, 2014)
"Is it best to have a stem cell transplant done upfront?" (Oct 12, 2014)
"Should I do an early stem cell transplant?" (Jul 24, 2014)
It's not true that ALL insurance companies won't allow you to harvest and store stem cells for a future transplant. It just depends on your specific insurance company's policy. So, I would suggest calling your insurance company and/or reviewing their detailed certificate of coverage. It's also not mandatory that one collect stem cells up front in the treatment process. Most patients can wait till a later time (relapse) and also successfully harvest at that time.
It is also a bit curious that your doctor said "could stay in remission for up to two years and with the stem cell transplant I could stay in remission for 3.5 years or so. Of course these are not absolute times". Even if the doctor isn't talking in absolute terms, there is no way he could even know ballpark estimates for your particular situation. I'm going to guess that your doctor works in a facility that does transplants?
There are a lot of threads on this site regarding the pros and cons of early versus delayed versus no transplant whatsoever. Here are a sample of some threads you might consider reading through.
"Experiences with not doing an early stem cell transplant" (Jan 29, 2015)
"Stem cell transplant or not?" (Nov 8, 2014)
"Is it best to have a stem cell transplant done upfront?" (Oct 12, 2014)
"Should I do an early stem cell transplant?" (Jul 24, 2014)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stem cell transplant or not?
Little Monkey wrote:
Thank you!
Congrats on the remission, Winkdot.
Thank you!
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Anonymous
Re: Stem cell transplant or not?
Good info Multibilly! Thanks! I will check with my insurance company. And, yes, he does work at a transplant facility.
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Anonymous
Re: Stem cell transplant or not?
Good morning, Winkdot. Congratulations on your CR.
Here are a couple of thoughts for you as you decide. First, go to the Mayo Clinics MSmart Guidelines. There are specific circumstances where they advise ASCT after initial induction, and other circumstances where they advise ASCT after first relapse. After you get a read on that, you can evaluate whether or not the "default" decision for you would be ASCT or not; keeping in mind that these are first cut guidelines and there would be many good detailed reasons to deviate from the guidelines based on particular individual circumstances.
I agree with MultiBilly's comment to check your insurance for storing stem cells. You do read that it sometimes denied, but my impression is that it is more and more common now. You need to have an insurance that will support this, AND, a center with storage capabilities.
A second possibility in your case would be to see if there are any clinical trials that might apply to you, that would let you have some type of new best in class treatment. If you opt not to go to ASCT now, I am thinking that there would most likely be some type of maintenance. The most promising new treatments in the pipeline would be one of the new monoclonal antibodies (elo or dara, for example); or one of the immunotherapy options. I would advise a lot of research, and only go forward with this option of you are comfortable. Good Luck.
Here are a couple of thoughts for you as you decide. First, go to the Mayo Clinics MSmart Guidelines. There are specific circumstances where they advise ASCT after initial induction, and other circumstances where they advise ASCT after first relapse. After you get a read on that, you can evaluate whether or not the "default" decision for you would be ASCT or not; keeping in mind that these are first cut guidelines and there would be many good detailed reasons to deviate from the guidelines based on particular individual circumstances.
I agree with MultiBilly's comment to check your insurance for storing stem cells. You do read that it sometimes denied, but my impression is that it is more and more common now. You need to have an insurance that will support this, AND, a center with storage capabilities.
A second possibility in your case would be to see if there are any clinical trials that might apply to you, that would let you have some type of new best in class treatment. If you opt not to go to ASCT now, I am thinking that there would most likely be some type of maintenance. The most promising new treatments in the pipeline would be one of the new monoclonal antibodies (elo or dara, for example); or one of the immunotherapy options. I would advise a lot of research, and only go forward with this option of you are comfortable. Good Luck.
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JPC - Name: JPC
Re: Stem cell transplant or not?
Anonymous -
I'm assuming you're the "Winkdot" who posted at the beginning of this thread, but it might be helpful in the future if you logged in before posting, just to reduce confusion about who you are when you post.
And welcome to the forum, by the way!
I'm assuming you're the "Winkdot" who posted at the beginning of this thread, but it might be helpful in the future if you logged in before posting, just to reduce confusion about who you are when you post.
And welcome to the forum, by the way!
Re: Stem cell transplant or not?
Hi winkdot,
You've gotten great info from the other folks replying to your question. I just want to add one point to consider.
It might be worth asking your doctor what method was used to try to detect myeloma cells in your bone marrow aspiration sample. There's the standard method of looking at the sample under the microscope and then there are much more sensitive methods like flow cytometry and deep sequencing that are used now to detect minimal residual residual disease. These last two are mostly used for people in clinical trials now, but will become more standard tests soon.
So it might help you in making your ASCT yes/no decision to know the level of sensitivity involved when your doctor said "no detectable cancer."
Regardless of the level of sensitivity, that's certainly good news that you got, so congratulations!
And, also regardless of the level of sensitivity, the assumption has to be that there are still myeloma cells in you - unfortunately.
Best wishes to you in making your decision. To transplant or not is one of the toughest treatment decisions multiple myeloma patients and their doctors face today.
Mike
You've gotten great info from the other folks replying to your question. I just want to add one point to consider.
It might be worth asking your doctor what method was used to try to detect myeloma cells in your bone marrow aspiration sample. There's the standard method of looking at the sample under the microscope and then there are much more sensitive methods like flow cytometry and deep sequencing that are used now to detect minimal residual residual disease. These last two are mostly used for people in clinical trials now, but will become more standard tests soon.
So it might help you in making your ASCT yes/no decision to know the level of sensitivity involved when your doctor said "no detectable cancer."
Regardless of the level of sensitivity, that's certainly good news that you got, so congratulations!
And, also regardless of the level of sensitivity, the assumption has to be that there are still myeloma cells in you - unfortunately.
Best wishes to you in making your decision. To transplant or not is one of the toughest treatment decisions multiple myeloma patients and their doctors face today.
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: Stem cell transplant or not?
Hi Winkdot!
Congrats on your CR and welcome! If you decide to research trials with either daratumumab or elotuzumab, there is some good info in this beacon thread:
https://myelomabeacon.org/forum/daratumumab-elotuzumab-trials-experience-t5554.html#p32395
Best wishes! BN
Congrats on your CR and welcome! If you decide to research trials with either daratumumab or elotuzumab, there is some good info in this beacon thread:
https://myelomabeacon.org/forum/daratumumab-elotuzumab-trials-experience-t5554.html#p32395
Best wishes! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Stem cell transplant or not?
Thank you for the info JPC. Lot to think about. The more I read makes me think there is really no right answer. Just do it or not, and pray either way.
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