EJ is inching toward his SCT and I have a concern regarding the number of stem cells that need to be collected for the transplant. Everything I read seems to imply that it is standard to collect enough cells for two transplants. The doc we have been talking with says that he will only collect enough for one. Even if EJ elects to have another transplant in the future, he says he would collect new cells, he never uses old cells because they may have degraded over time. I think this "practice" is being driven more by the cost he incurrs storing the cells.
My concers are obvious -- What happens if the first SCT doesn't take and he needs to have another transplant in a matter of months, will they be able to collect new cells? Or, if years from now he needs to have another transplant, will the drugs he's taken in the interim have hurt his cells? We've asked him to collect enough for two and he is resisting.
Has anyone encountered a similar situation where their doctor didn't collect and store enough cells for two transplants? What did you do? Should we consider going to another doctor?
Thanks! 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: Number of Stem Cells
Hi Lyn, I've heard a few other people say that their doctor wouldn't collect for more than one transplant, probably because of the cost of storage. But it certainly seems to be more common to try to collect for two, three, or possibly even more transplants.
The longer you're treated with myeloma therapies, the harder it can be to collect enough stem cells. Many people collect stem cells near the beginning of treatment even if they aren't planning on a transplant any time soon. Then they have them when they're ready for them.
I would definitely seek a another opinion and go with the one you feel most comfortable with. If you prefer having extra stem cells in storage as a back-up plan, then find a doctor who's supportive.
The longer you're treated with myeloma therapies, the harder it can be to collect enough stem cells. Many people collect stem cells near the beginning of treatment even if they aren't planning on a transplant any time soon. Then they have them when they're ready for them.
I would definitely seek a another opinion and go with the one you feel most comfortable with. If you prefer having extra stem cells in storage as a back-up plan, then find a doctor who's supportive.
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sylvia
Re: Number of Stem Cells
EJ and I went to the SCT doc today to get the results of his latest tests and to see if he is ready for a SCT. Happily, his bone marrow shows 5 - 7% myeloma cells, and his M-spike is less than 1 (down from 2.7). So he is ready for his SCT, which will take place at the beginning of June.
We also wanted to get to the bottom of the collection/storage issue.
What we learned is that when you have an SCT, the cells that are put back into you are never exposed to the melphalan! The melphalan is out of your system before your cells are given back to you. If he needs a SCT in the future, his SC should be fine, as long as he isn't exposed to something else that will hurt them. We were very pleased to hear this!
Lyn
We also wanted to get to the bottom of the collection/storage issue.
What we learned is that when you have an SCT, the cells that are put back into you are never exposed to the melphalan! The melphalan is out of your system before your cells are given back to you. If he needs a SCT in the future, his SC should be fine, as long as he isn't exposed to something else that will hurt them. We were very pleased to hear this!
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
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