I only harvested 8 million stem cells / kg body weight over two days and then they stopped further collecting, saying that was enough for two transplants.
But then the doctor mentioned I should probably use all of them instead of saving any for a possible future transplant.
His reasons were several:
1) I'm 68.
2) He said Medicare doesn't cover a second auto, and
3) That if the first auto didn't work, why would you repeat the same non working treatment.
I have several high risk genetic markers. TP53 deletion and monosomy 13. I have no comorbities and am in very good shape for a 68 year old. I was diagnosed this past February 2015 and have various lytic lesions but none are large or serious. I was on Revlimid, Velcade, and dexamethasone February through July.
The plan is to go on Velcade twice a month for maintenance. There is also an upcoming clinical trial with Velcade maintenance due to start in December he thought would be good.
It seems he is asking me to decide which way to go: save half the cells or use them all. I'm so confused.
Can anyone enlighten me? I have a week and a half to go til transplant.
Thank you so much.
Forums
6 posts
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heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
Re: Should I save stem cells for a possible second SCT?
Hello Headn
We had this exact conversation for my wife's ASCT in February of this year. Infusion of 8 will (typically) reduce the time that your while blood cells have bottomed out from 3-5 days to 1-3 days, and your numbers will generally come back somewhat quicker. So 8 is typically better than 4. Your doctor is in agreement with our doctor in that regard.
However, if you tolerate the ASCT well (you would be the judge of that), and it produced a good response, then you would want to have at least 4 or 5 in the bank if needed in the future. I would explore the possibility of collecting again at some point in the future. It could possibly be even after you recover from the ASCT. If there is some issue (for instance insurance) with collecting again, then you have to make the call, and to me its not clear cut.
Good luck. JPC
We had this exact conversation for my wife's ASCT in February of this year. Infusion of 8 will (typically) reduce the time that your while blood cells have bottomed out from 3-5 days to 1-3 days, and your numbers will generally come back somewhat quicker. So 8 is typically better than 4. Your doctor is in agreement with our doctor in that regard.
However, if you tolerate the ASCT well (you would be the judge of that), and it produced a good response, then you would want to have at least 4 or 5 in the bank if needed in the future. I would explore the possibility of collecting again at some point in the future. It could possibly be even after you recover from the ASCT. If there is some issue (for instance insurance) with collecting again, then you have to make the call, and to me its not clear cut.
Good luck. JPC
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JPC - Name: JPC
Re: Should I save stem cells for a possible second SCT?
Heddleandhook,
Do you have any more information about the clinical trial involving Velcade maintenance that is due to start in December?
Do you have any more information about the clinical trial involving Velcade maintenance that is due to start in December?
Re: Should I save stem cells for a possible second SCT?
For what it's worth, my doctors were very firm in wanting to get two transplant's worth of cells. Their idea is that if you do respond well to the first (no progression for a couple of years or more), then it's worth doing a second transplant.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Should I save stem cells for a possible second SCT?
HeddleandHook -
EJ didn't have the opportunity to save stem cells for a second transplant. When we had this discussion with his doctor prior to his SCT (over four years ago), he assured us that, if he should decide to have a second transplant in the future, it would still be possible to get stem cells from him. Given the drugs available to mobilize stem cells, I have every confidence that this is true.
Good luck!
Lyn
EJ didn't have the opportunity to save stem cells for a second transplant. When we had this discussion with his doctor prior to his SCT (over four years ago), he assured us that, if he should decide to have a second transplant in the future, it would still be possible to get stem cells from him. Given the drugs available to mobilize stem cells, I have every confidence that this is true.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Should I save stem cells for a possible second SCT?
mrozdav, I do not yet have any info on the trial the Dr mentioned. It is at Fred Hutch SCCA and supposed to start in Dec/Jan.
JPC, Lyn, Mike, thanks for your replies.
I was surely hoping I could get enough to have that shortened engraftment time as well as enough for a second sct. I wish I could have insisted on another day of collection somehow. Now left with the choice of using all and risk of not collecting in the future.
JPC, Lyn, Mike, thanks for your replies.
I was surely hoping I could get enough to have that shortened engraftment time as well as enough for a second sct. I wish I could have insisted on another day of collection somehow. Now left with the choice of using all and risk of not collecting in the future.
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heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
6 posts
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