My father was diagnosed with myeloma in March of this year, and almost immediately started chemotherapy treatment using CDT (cyclophosphamide, dexamethasone and thalidomide).
He's just finished his final round and is now preparing to undergo a stem cell harvest, ahead of an autologous stem cell transplant in October.
The doctors are planning to extract enough stem cells to do two full transplants. However, my question is why they don't take enough for three transplants? My father is in very good health and is a young 65, so with the advances in treatment we are hoping he would be well enough to repeat the transplant process more than twice.
When he asked about the option of a potential third transplant, the consultant largely dismissed it, saying that third transplants were very rare. But surely if there is even a possibility wouldn't it be better to take enough stem cells now while they are relatively healthy?
Has anyone heard of someone having more than two autologous transplants? And what do you think about the option of harvesting more stem cells now just in case?
If you had a transplant how many treatments worth of stem cells did they harvest?
Forums
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dominoman - Name: Mike
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: 2014
- Age at diagnosis: 66
Re: Harvesting stem cells for more than 1 transplant
At 33 my daughter had enough cells for 2 transplants gathered. She had her SCT in August 2012. She has just relapsed so I am thinking she will be doing another SCT. I am under the understanding that if someone needs a third transplant, it would be a donor [allogeneic] transplant.
We are going to be talking to her doctor about testing her brother to see if he would be a compatible donor in the future.
We are going to be talking to her doctor about testing her brother to see if he would be a compatible donor in the future.
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Tj13
Re: Harvesting stem cells for more than 1 transplant
Dominonman,
I don't believe I've ever heard of anyone ever doing three auto SCTs, but perhaps there are folks who have done this.
I think the fundamental question you need to ask is why you would want a third auto SCT if the two before it failed? (I think I would be personally asking that question if just one auto SCT had failed, assuming I chose the auto SCT route in the first place). It's not as if an auto SCT is the only treatment option available to a person.
Is your father simply not considering a different approach down the line, such as drug-only therapy or some version of an allo (donor) transplant (as TJ stated)?
I don't believe I've ever heard of anyone ever doing three auto SCTs, but perhaps there are folks who have done this.
I think the fundamental question you need to ask is why you would want a third auto SCT if the two before it failed? (I think I would be personally asking that question if just one auto SCT had failed, assuming I chose the auto SCT route in the first place). It's not as if an auto SCT is the only treatment option available to a person.
Is your father simply not considering a different approach down the line, such as drug-only therapy or some version of an allo (donor) transplant (as TJ stated)?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Harvesting stem cells for more than 1 transplant
Multibilly, it's not so much about it the auto SCT failing. But once the remission period ends, as it always does eventually, then I'd always thought of another autologous SCT as "resetting the clock" and starting again with another clean set of (almost cancer free) stem cells.
Am I thinking of it in the wrong way?
Am I thinking of it in the wrong way?
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dominoman - Name: Mike
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: 2014
- Age at diagnosis: 66
Re: Harvesting stem cells for more than 1 transplant
I will leave it to others to comment ...
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Harvesting stem cells for more than 1 transplant
Hi Dominoman,
Regarding "resetting the clock" - an auto transplant essentially does that provided all the myeloma cells are wiped out by high dose chemo (melphalan).
However, multiple myeloma really lives up to its name in that any one patient's myeloma is likely to consist of different myeloma clones. Some of these clones will react differently to different chemo agents. So if you "wipe out" the myeloma with melphalan and a small population of myeloma cells survive, these cells are likely to be resistant to melphalan.
It may take years (or months) for these clones to grow to a level that they need to be controlled again. The longer it takes to grow back to a significant level, the more likely there are more myeloma clones that are not necessarily resistant to melphalan.
So for the second auto, melphalan will kill off the cells that aren't resistant to it. But this time the overall population of melphalan resistant myeloma clones is larger. They start growing again and if none of their growth conditions have changed, the length of remission for the patient will be shorter.
That's just the myeloma side of things. You also have to consider the side effects of melphalan on the body and the toll it takes. If a person had 2 autos - 1st remission was 10 years, the second remission 5 years - maybe they would consider a 3rd auto if the person was in good health.
All the best for you and your dad.
Regarding "resetting the clock" - an auto transplant essentially does that provided all the myeloma cells are wiped out by high dose chemo (melphalan).
However, multiple myeloma really lives up to its name in that any one patient's myeloma is likely to consist of different myeloma clones. Some of these clones will react differently to different chemo agents. So if you "wipe out" the myeloma with melphalan and a small population of myeloma cells survive, these cells are likely to be resistant to melphalan.
It may take years (or months) for these clones to grow to a level that they need to be controlled again. The longer it takes to grow back to a significant level, the more likely there are more myeloma clones that are not necessarily resistant to melphalan.
So for the second auto, melphalan will kill off the cells that aren't resistant to it. But this time the overall population of melphalan resistant myeloma clones is larger. They start growing again and if none of their growth conditions have changed, the length of remission for the patient will be shorter.
That's just the myeloma side of things. You also have to consider the side effects of melphalan on the body and the toll it takes. If a person had 2 autos - 1st remission was 10 years, the second remission 5 years - maybe they would consider a 3rd auto if the person was in good health.
All the best for you and your dad.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Harvesting stem cells for more than 1 transplant
Mike,
I have been told that up to about a fourth of the people who attempt stem cell harvesting are not successful in obtaining enough stem cells for even a single transplant. The number of people who have enough harvested to have three stem cell transplants is probably a small fraction.
I saw a man once who has lived with myeloma for 18 years with just three stem cell transplants and only stem cell transplants. I do not know if all three were done using his own stem cells. I have heard of people doing two stem cell transplants using their own stem cells and a third using a donor, but I do not believe that it is that common.
As Libby said, the results from SCTs are almost always the best with the first and the ones that follow not as good. It is not like you can reset the clock indefinitely with SCTs. I wish this were true, but it is not. Also, the SCTs take a toll on the body and this seems to be an area that is still being studied.
Something else you may want to look into for your father is not all insurance will pay to store extra stem cells for a second transplant latter, and some hospitals will not use stem cells that were harvested at another hospital.
Hopefully you father responds well to whatever treatment he receives. Ideally, he gets into a remission long enough that maybe a cure will be found before he needs that second SCT.
I have been told that up to about a fourth of the people who attempt stem cell harvesting are not successful in obtaining enough stem cells for even a single transplant. The number of people who have enough harvested to have three stem cell transplants is probably a small fraction.
I saw a man once who has lived with myeloma for 18 years with just three stem cell transplants and only stem cell transplants. I do not know if all three were done using his own stem cells. I have heard of people doing two stem cell transplants using their own stem cells and a third using a donor, but I do not believe that it is that common.
As Libby said, the results from SCTs are almost always the best with the first and the ones that follow not as good. It is not like you can reset the clock indefinitely with SCTs. I wish this were true, but it is not. Also, the SCTs take a toll on the body and this seems to be an area that is still being studied.
Something else you may want to look into for your father is not all insurance will pay to store extra stem cells for a second transplant latter, and some hospitals will not use stem cells that were harvested at another hospital.
Hopefully you father responds well to whatever treatment he receives. Ideally, he gets into a remission long enough that maybe a cure will be found before he needs that second SCT.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Harvesting stem cells for more than 1 transplant
Hi Dominoman,
Two comments - In my experience, when they collected my stem cells, they did not know how many they had collected when they unhooked me at the end of the first harvest day. Only after further processing were they able to count the stem cells. So it's not like they can get a count in real time and then shut things off exactly when you hit the number for two SCTs. So they might end up collecting enough for three or more transplants sort of inadvertently. It's not an exact science.
Second, you can have weird circumstances where they may need to use two "batches" of stem cells with one overall transplant (high dose melphalan + stem cells) because the first batch does not engraft for one reason or another. That almost happened to me due to a nasty infection that slowed the engraftment process. On the last day before they would have started the process for the second batch of stem cells to be given to me, my white blood cell count ticked up just a notch. And then from there it continued its upward trajectory.
So the bottom line is - I agree with you. Although having three auto SCTs would be extremely rare, as others have said, I think it's better to have enough stem cells for at least three transplants because you just never know what's going to happen. And it's best to get all the stem cells now rather than some now and some later, because more chemo typically makes it more difficult to produce stem cells.
Having said this, though, a lot depends on how well your dad produces stem cells this time. Some people produce more, some people less.
And please keep in mind that I am not an MD. I'm just talking about what I experienced as a patient and what my doctors have told me.
Best of luck to your father.
Two comments - In my experience, when they collected my stem cells, they did not know how many they had collected when they unhooked me at the end of the first harvest day. Only after further processing were they able to count the stem cells. So it's not like they can get a count in real time and then shut things off exactly when you hit the number for two SCTs. So they might end up collecting enough for three or more transplants sort of inadvertently. It's not an exact science.
Second, you can have weird circumstances where they may need to use two "batches" of stem cells with one overall transplant (high dose melphalan + stem cells) because the first batch does not engraft for one reason or another. That almost happened to me due to a nasty infection that slowed the engraftment process. On the last day before they would have started the process for the second batch of stem cells to be given to me, my white blood cell count ticked up just a notch. And then from there it continued its upward trajectory.
So the bottom line is - I agree with you. Although having three auto SCTs would be extremely rare, as others have said, I think it's better to have enough stem cells for at least three transplants because you just never know what's going to happen. And it's best to get all the stem cells now rather than some now and some later, because more chemo typically makes it more difficult to produce stem cells.
Having said this, though, a lot depends on how well your dad produces stem cells this time. Some people produce more, some people less.
And please keep in mind that I am not an MD. I'm just talking about what I experienced as a patient and what my doctors have told me.
Best of luck to your father.
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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: Harvesting stem cells for more than 1 transplant
I am getting ready to have a SCT in November in Chicago, IL. They will harvest last week in October. My question is: If they collect enough for 2 stem cell transplants, does insurance usually pay for the storage of the stem cells until needed?
I am on Medicare plus blue. If not, how much does the storage usually run?
Terri
I am on Medicare plus blue. If not, how much does the storage usually run?
Terri
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Harvesting stem cells for more than 1 transplant
Terri-
It's hard to answer your question. You should first ask at the center where you are having the stem cell transplant. The one that I get treated at doesn't charge for storage of stem cells. Others do. Some insurances pay the cost, and some don't. I have no idea what Medicare's policy is for this.
So, first ask where you are treated and if they charge, call Medicare to find out what their policy is. Medicare will only pay for one transplant.
I hope that you have a smooth harvesting and transplant experience,
Nancy in Phila
It's hard to answer your question. You should first ask at the center where you are having the stem cell transplant. The one that I get treated at doesn't charge for storage of stem cells. Others do. Some insurances pay the cost, and some don't. I have no idea what Medicare's policy is for this.
So, first ask where you are treated and if they charge, call Medicare to find out what their policy is. Medicare will only pay for one transplant.
I hope that you have a smooth harvesting and transplant experience,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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