Craig, Mark, and Karen -
I realized I never got around to thanking you all for your responses. Based on them, I decided to go through with the transplant now and will be starting the collection process next week. Your feedback has made me so much more comfortable in that decision.
I'm so grateful for this Forum where I can get feedback from actual patients who have gone through this before me and not have to rely entirely on physicians who may or may not have other motives. Best of luck to all of you!
Forums
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Autologous stem cell transplants in the United States
Chadsnow,
I know you didn't ask for additional input (nor did Mark11, since this is a bit off his thread topic), but my husband is 43 and achieved a complete response (CR) after 4 months of Kyprolis, Revlimid, and dexamethasone (KRD earlier this year. He is standard risk, so far, and we have very young children.
We exhaustively researched the question of early autologous stem cell transplant versus. waiting, for all the reasons mentioned in the posts above. His specialist said he would be supportive of either route, and didn't pressure us, but basically, it came down to the fact that while we could roll the dice on the perchance and promise of curative drugs 10-15 years away, the present time was optimal to take an aggressive step that almost all major studies show would get him a longer remission and potentially longer OS. We are concerned that he won't even see our children make it to high school; let alone marry, have grandchildren, etc. He is young, in good health otherwise, with excellent insurance presently that would cover virtually all the major costs of the transplant, and his employer was very supportive of his taking whatever time he needed.Like blueblood's point, too many of those factors will be out of our control 5 or 10 years down the road.
My husband's transplant was on August 1st and he started back part-time on Day 45, then full time on Day 60. The transplant wasn't a walk in the park (definitely close to the bad week in Vegas analogy!) – he had the standard GI issues, nausea, loss of appetite, and discomfort for about 10 days But by Day 16 or so he was on his way to recovery. Now, after a full day of work, he is tired come evening; however, everyone remarks that they cannot believe how fantastic he looks and he doesn't have anything like the wiped-out fatigue that he experience during induction therapy.
Good luck to you!
I know you didn't ask for additional input (nor did Mark11, since this is a bit off his thread topic), but my husband is 43 and achieved a complete response (CR) after 4 months of Kyprolis, Revlimid, and dexamethasone (KRD earlier this year. He is standard risk, so far, and we have very young children.
We exhaustively researched the question of early autologous stem cell transplant versus. waiting, for all the reasons mentioned in the posts above. His specialist said he would be supportive of either route, and didn't pressure us, but basically, it came down to the fact that while we could roll the dice on the perchance and promise of curative drugs 10-15 years away, the present time was optimal to take an aggressive step that almost all major studies show would get him a longer remission and potentially longer OS. We are concerned that he won't even see our children make it to high school; let alone marry, have grandchildren, etc. He is young, in good health otherwise, with excellent insurance presently that would cover virtually all the major costs of the transplant, and his employer was very supportive of his taking whatever time he needed.Like blueblood's point, too many of those factors will be out of our control 5 or 10 years down the road.
My husband's transplant was on August 1st and he started back part-time on Day 45, then full time on Day 60. The transplant wasn't a walk in the park (definitely close to the bad week in Vegas analogy!) – he had the standard GI issues, nausea, loss of appetite, and discomfort for about 10 days But by Day 16 or so he was on his way to recovery. Now, after a full day of work, he is tired come evening; however, everyone remarks that they cannot believe how fantastic he looks and he doesn't have anything like the wiped-out fatigue that he experience during induction therapy.
Good luck to you!
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Autologous stem cell transplants in the United States
Great post, TexGal.
I actually think what you are going to see with patients like TexGal's husband and DeanUK is that the overall survival advantage is going to widen for patients who do autologous stem cell transplants upfront who are responding to their induction as well as they are. The reason is that in blood cancer it has been shown since the 1960's in children's leukemia and many times since that the more effective therapies a patients uses early in disease course the better chance they have at having a long remission.
As everyone knows, I have a very aggressive mindset when it comes to treatment, but I think patients who have a great response to induction should be encouraged to do an autologous since they have the best chance of being in the group that never relapses. It is a small group currently in myeloma, but I am hopeful that it is getting larger with the new therapies that are becoming available. I am definitely hoping Chadsnow, TexGal's husnand aand DeanUK are going to prove me correct on that topic!
Mark
I actually think what you are going to see with patients like TexGal's husband and DeanUK is that the overall survival advantage is going to widen for patients who do autologous stem cell transplants upfront who are responding to their induction as well as they are. The reason is that in blood cancer it has been shown since the 1960's in children's leukemia and many times since that the more effective therapies a patients uses early in disease course the better chance they have at having a long remission.
As everyone knows, I have a very aggressive mindset when it comes to treatment, but I think patients who have a great response to induction should be encouraged to do an autologous since they have the best chance of being in the group that never relapses. It is a small group currently in myeloma, but I am hopeful that it is getting larger with the new therapies that are becoming available. I am definitely hoping Chadsnow, TexGal's husnand aand DeanUK are going to prove me correct on that topic!
Mark
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Mark11
Re: Autologous stem cell transplants in the United States
Hi Mark11,
Great read, and yes I hope I do prove you correct. You know what I have decided for my course of action. Just hope my team agree. Roll on Friday to find out. In the meantime, I've looked upon my stem cell transplant being like a boxing match coming up. So I've been running, going to the gym, and eating lots, but I've never been one to be able to put weight on quickly. November 8th is the date of the transplant. From diagnosis, induction treatment, and soon stem cell transplant is exactly all done in 6 months. Thanks for all the info.
Chadsnow,
We are nearly the same age. Like you, I'm new to all this, but I will advise to hit it hard at the start. I'm waiting on my team to confirm if I'm having a reduced-intensity condition (RIC) allogeneic stem cell transplant after the autologous transplant. Personally for me, I want it after they mentioned it may be on the cards for me. I have made my mind up 100%, but the decision is out of my hands to a certain point. I find out soon. Good luck with your harvest . Do you think you will have your transplant this year?
Regards,
Dean
Great read, and yes I hope I do prove you correct. You know what I have decided for my course of action. Just hope my team agree. Roll on Friday to find out. In the meantime, I've looked upon my stem cell transplant being like a boxing match coming up. So I've been running, going to the gym, and eating lots, but I've never been one to be able to put weight on quickly. November 8th is the date of the transplant. From diagnosis, induction treatment, and soon stem cell transplant is exactly all done in 6 months. Thanks for all the info.
Chadsnow,
We are nearly the same age. Like you, I'm new to all this, but I will advise to hit it hard at the start. I'm waiting on my team to confirm if I'm having a reduced-intensity condition (RIC) allogeneic stem cell transplant after the autologous transplant. Personally for me, I want it after they mentioned it may be on the cards for me. I have made my mind up 100%, but the decision is out of my hands to a certain point. I find out soon. Good luck with your harvest . Do you think you will have your transplant this year?
Regards,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Autologous stem cell transplants in the United States
Just adding my $0.02 here. I was diagnosed in Jan. 2010, reached a very good partial response (VGPR) from induction (still had an identifiable M-spike) and had a transplant. After 6 months I finally reached a complete response (CR) and stayed there for 5 years. I have been slowly coming out of remission. Looks like by the time I start treatment there will have been a 7 year gap, with no meds (maintenance wasn't really common back then where I live).
My next round of treatments will include a second transplant, hopefully repeating this good response! (Though I'm not looking forward to those three weeks again; for me it was like having a really bad flu, with some kidney issues added in.)
You gotta go with what is best for your circumstances. But it seems most of us younger folk opt for the most aggressive treatment and hope to reach as deep a response as possible and maintain that for as long as possible.
My next round of treatments will include a second transplant, hopefully repeating this good response! (Though I'm not looking forward to those three weeks again; for me it was like having a really bad flu, with some kidney issues added in.)
You gotta go with what is best for your circumstances. But it seems most of us younger folk opt for the most aggressive treatment and hope to reach as deep a response as possible and maintain that for as long as possible.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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