Would others please share their insights into delaying stem cell transplant and maintenance? My M-Spike is minimal, about to undergo another round of vel/rev/dex to hopefully lower it to "no trace". I am seriously considering delaying further treatment and closely monitoring. I had MGUS for about 8 years with no symptoms, recently had a small lession and m-spike of 4.0 (thus ths treatment). Thank you for any and all inputs.
Ann
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well365 - Name: Ann
- Who do you know with myeloma?: Patient
- When were you/they diagnosed?: 2012
- Age at diagnosis: 54
Re: Maintenance, stem cell transplant
A fraction of people who have so-called "high-risk myeloma" are usually recommended to undergo transplantation right away. It's just my uneducated guess, but since your MGUS took quite a few years to progress I'd think you don't have high-risk myeloma. Obviously check with your onc tho.
For everyone else, I think the timing of transplantation really comes down to personal preference. Even the myeloma experts can't agree about the right timing. So I'd say do what feels right to you.
Definitely do some searches on this site because there's been a lot of discussion on this topic. Here's one particular conversation that you might find informative: https://myelomabeacon.org/forum/transplant-in-the-future-timing-questions-t300.html
For everyone else, I think the timing of transplantation really comes down to personal preference. Even the myeloma experts can't agree about the right timing. So I'd say do what feels right to you.
Definitely do some searches on this site because there's been a lot of discussion on this topic. Here's one particular conversation that you might find informative: https://myelomabeacon.org/forum/transplant-in-the-future-timing-questions-t300.html
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Jeff
Re: Maintenance, stem cell transplant
Thank you Jeff
The link is very helpful!
Ann
The link is very helpful!
Ann
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well365 - Name: Ann
- Who do you know with myeloma?: Patient
- When were you/they diagnosed?: 2012
- Age at diagnosis: 54
Re: Maintenance, stem cell transplant
I was diagnosed in Nov 2010 and achieved CR in Mrach 2011. I have harvested my stem cells but have yet to use them. I remain on maintanence therapy with very little side effects. Actually there are many days when I forget I have cancer! So for me, not having the SCT early on allows me to not feel or look like a cancer patient - that will come in time. I get to be me for awhile longer and am successfully keeping the multiple myeloma at bay. But again, you need to do what feels right for you. I wish you the best of luck!!
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survivormm - Name: JoanneT
- Who do you know with myeloma?: me!
- When were you/they diagnosed?: October 2010
- Age at diagnosis: 51
Re: Maintenance, stem cell transplant
Hi Ann-
My husband and I were of the opinion that if he had responded to his chemo and went into remission, that he was going to postpone the stem cell transplant as long as possible. However, he was going to harvest the stem cells immediately when he achieved remission. Alas, he never achieved a good enough remission, so he is going for the allogenic transplant in about a week or so. No harvesting, no autologous transplant.
The idea of postponing as long as possible appealed to both of us. We knew the transplant was a probability, but the possibility of a delay of our own choosing felt like exerting a bit of our own control on a disease over which we have very little control. Those couple of months while we rested comfortably with that decision were quite nice.
It's a personal decision and one between you and your oncologist. But if you choose to delay, you might want to harvest those cells immediately when your m-spike is back down.
My husband and I were of the opinion that if he had responded to his chemo and went into remission, that he was going to postpone the stem cell transplant as long as possible. However, he was going to harvest the stem cells immediately when he achieved remission. Alas, he never achieved a good enough remission, so he is going for the allogenic transplant in about a week or so. No harvesting, no autologous transplant.
The idea of postponing as long as possible appealed to both of us. We knew the transplant was a probability, but the possibility of a delay of our own choosing felt like exerting a bit of our own control on a disease over which we have very little control. Those couple of months while we rested comfortably with that decision were quite nice.
It's a personal decision and one between you and your oncologist. But if you choose to delay, you might want to harvest those cells immediately when your m-spike is back down.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: Maintenance, stem cell transplant
I was diagnosed with stage 3 Sept. 2011. I had CR in Mar. 2012 and immediately had stem cells collected. I am now being treated with 15 milligrams of Revlimid as a maintenance treatment. No trace of the cancer at this point in time. My intention is to delay transplant until such time as the cancer reoccurs and maintenance therapy doesn't bring it under control. A concern I have is that I just turned 65 and have been told that getting approval for a transplant from medicare once I reach 70 is difficult if not impossible. Perhaps getting 5 years of control with maintenance is all a person should hope for. The current new drugs and those under development provide some hope that multiple myeloma can be treated as effectively with maintenance as with transplant. Who knows what the future holds. I may have a reoccurrence next month and then be unable to return to a CR. That being the case I would decide to go the transplant route. Without sufficient evidence of one approach being more successful than the other, it does truly come down to a personal decision that may need to be altered as the future unfolds. The very best for you as you make these difficult decisions.
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Day1
Re: Maintenance, stem cell transplant
I really did not have a choice. The oncologist I was referred to decided it was the route for me because of my stage of myeloma. From what I have heard it is the best route for my age and type of myeloma. I am 57 years old and have the most aggressive iGg IIIa? So my treatment was geared to transplant!
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Maintenance, stem cell transplant
I began treatment with Rev and Dex in February 2011 and had my stem cells harvested that April. We had decided to delay the transplant for as long as possible. My M spike has been steadily rising over that last 6 months and I now anticipate moving to transplant sooner than later. Even though my initial remission was very short, I believe it was worth trying drug therapy before transplant. Only time will tell! Best of luck to you.
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Kim
Re: Maintenance, stem cell transplant
Dear Well365,
Previous studies have shown that the approach of delayed transplant is not inferior to early transplant. As such, a decision to hold off is a reasonable one. If feasible, it would be good to collect stem cells in your first remission (i.e. soon).
In the original study of RVD for treatment of newly-diagnosed myeloma, patients not going on to transplant received 8 cycles and were allowed to go on to subsequent maintenance. For those that went on to transplant, they typically received ~4 cycles of therapy prior to going on to high-dose melphalan/stem cell transplant.
If you cut therapy short (fewer than 8 cycles and no maintenance), I suspect the remission will be shorter. I would discuss the situation with your oncologist. If you have low risk disease, I think there is room for more flexibility about treatment, especially if you are suffering from excessive toxicities related to treatment. However, I would at least consider the possibility of 8 cycles of treatment (provided you are tolerating treatment well enough) followed by maintenance therapy if you do not go on to transplant.
Let us know what you decide to do and how things go. Take care!
Pete V.
Previous studies have shown that the approach of delayed transplant is not inferior to early transplant. As such, a decision to hold off is a reasonable one. If feasible, it would be good to collect stem cells in your first remission (i.e. soon).
In the original study of RVD for treatment of newly-diagnosed myeloma, patients not going on to transplant received 8 cycles and were allowed to go on to subsequent maintenance. For those that went on to transplant, they typically received ~4 cycles of therapy prior to going on to high-dose melphalan/stem cell transplant.
If you cut therapy short (fewer than 8 cycles and no maintenance), I suspect the remission will be shorter. I would discuss the situation with your oncologist. If you have low risk disease, I think there is room for more flexibility about treatment, especially if you are suffering from excessive toxicities related to treatment. However, I would at least consider the possibility of 8 cycles of treatment (provided you are tolerating treatment well enough) followed by maintenance therapy if you do not go on to transplant.
Let us know what you decide to do and how things go. Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Maintenance, stem cell transplant
Thank you all so very much for your input. I'm preparing to harvest stem cells in the next two weeks. I've decided to wait until a later date for the transplant. My oncologist has recommended Revlimid for the first 30 days after the stem cell harvest for maintenance. One step at a time seems to work best for me.
Again, I appreciate your comments and insights. I feel much better informed, both about the risks and benefits.
Ann
Again, I appreciate your comments and insights. I feel much better informed, both about the risks and benefits.
Ann
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well365 - Name: Ann
- Who do you know with myeloma?: Patient
- When were you/they diagnosed?: 2012
- Age at diagnosis: 54
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