Hi Mike,
I had my stem cell harvest last week and they planned to collect enough for three transplants which they managed to do from one collection. I asked haemotologist if they planned to do a tandem transplant in 6 months and they are not going to.
I have had my head in the sand since my diagnosis as I felt fantastic after starting treatment with VCD [Velcade, cyclophosphamide, dexamethasone]. I have no peripheral neuropathy and after a summer of feeling lousy with low haemoglobin and bone pain it was great to feel good!
But I have amyloidosis which affects my digestive system and tongue and since high dose chemo prior to collection have had low blood pressure, which is causing me much frustration doing anything. Takes about 5-10 minutes to be able to function normally after standing. Having an ECHO next week to see if it has affected my heart. The amyloidosis had improved during 3 rounds of treatment prior to collection.
I don't know whether this is why they have chosen to collect for 3 transplants and haven't found out about the translocation or deletion thing and if I am a high risk, but plan to ask when talking to specialist next. I will be having 2 years of consolidation on VDT after transplant.
But I do agree with what LibbyC says about subsequent transplants being less successful than previous ones and wonder what it would take to make me go through a third one if the prognosis is not going to great.
In NZ we have a public health system and don't have to pay for storage of stem cells, so if they are happy to store enough for 3 transplants that may or may not be used, who am I to complain.
I guess if you are happy to pay for storage if you have to and are able to produce enough for 3 transplants, what is the harm in storing extra. As I understand it, they can't harvest more stem cells after you have had a transplant, so a third transplant would require a donor and that involves an additional set of risks.
Jen
Forums
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Harvesting stem cells for more than 1 transplant
Hi NZMum,
Congratulations on producing enough stem cells for three transplants in one harvest session. That's great! I think you're right that nobody would elect to undergo three autologous transplants, under normal circumstances. I just think having enough for three gives you some margin in case something unexpected happens.
I was so stupid, I didn't even think about a potential cost for storing my unused stem cells. Nobody mentioned it to me, so I'm assuming the hospital I go to just does it for free.
I'm glad to hear that the VCD treatment has been going well for you. I'm extra happy to hear that the myeloma treatment has also caused the amyloidosis to improve.
I had a little trouble earlier in my treatment with low blood pressure, so I can sympathize with what you said about issues when you stand up. My problems weren't as severe as what you described though.
I hope the transplant goes smoothly! Please keep us posted on your progress.
Congratulations on producing enough stem cells for three transplants in one harvest session. That's great! I think you're right that nobody would elect to undergo three autologous transplants, under normal circumstances. I just think having enough for three gives you some margin in case something unexpected happens.
I was so stupid, I didn't even think about a potential cost for storing my unused stem cells. Nobody mentioned it to me, so I'm assuming the hospital I go to just does it for free.
I'm glad to hear that the VCD treatment has been going well for you. I'm extra happy to hear that the myeloma treatment has also caused the amyloidosis to improve.
I had a little trouble earlier in my treatment with low blood pressure, so I can sympathize with what you said about issues when you stand up. My problems weren't as severe as what you described though.
I hope the transplant goes smoothly! Please keep us posted on your progress.
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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
Nothing wrong with collecting as many cells as possible for future use, however I question the efficacy of a third ASCT if the first 2 have failed. I doubt that most transplant centers would be receptive to doing the third ASCT, and at that point I would be discussing alternate therapy with my myeloma specialist.
According to the center where I plan to transplant, Medicare will not pay for collection and store and will pay for only one transplant for patients less than age 70. If you have commercial insurance like the Blues, you need to contact them and ask if collection and storage is an option in your policy. You may need to ask your transplant coordinator to make this official inquiry for you.
Some time ago I asked about self pay for collection and store and was told the "cash" price is around $40,000. If there are no financial barriers, I would suggest you collect and store as many cells as possible and make your therapy decisions according to the progression of the disease.
Wishing your father and you the very best.
According to the center where I plan to transplant, Medicare will not pay for collection and store and will pay for only one transplant for patients less than age 70. If you have commercial insurance like the Blues, you need to contact them and ask if collection and storage is an option in your policy. You may need to ask your transplant coordinator to make this official inquiry for you.
Some time ago I asked about self pay for collection and store and was told the "cash" price is around $40,000. If there are no financial barriers, I would suggest you collect and store as many cells as possible and make your therapy decisions according to the progression of the disease.
Wishing your father and you the very best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Harvesting stem cells for more than 1 transplant
Hi Mike,
Thanks for that. Guess I'm lucky that our health system works the way it does, because the insurance thing sounds complicated. Having said that, Revlimid is not funded here as a treatment, so is not currently an option.
Hope everything goes well for your Dad's treatment and, because he is well at diagnosis, may it be a good sign for his future. He is lucky to have a caring son like you, but look after yourself through this process. Everything seems to take time and it's going to be a long journey.
Keep smiling
Jen
Thanks for that. Guess I'm lucky that our health system works the way it does, because the insurance thing sounds complicated. Having said that, Revlimid is not funded here as a treatment, so is not currently an option.
Hope everything goes well for your Dad's treatment and, because he is well at diagnosis, may it be a good sign for his future. He is lucky to have a caring son like you, but look after yourself through this process. Everything seems to take time and it's going to be a long journey.
Keep smiling
Jen
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Harvesting stem cells for more than 1 transplant
The reason why they only take enough stem cells for two transplants is simple once it is been explained to you properly.
Chemo knocks out fast growing cells, and not all the multiple myeloma cells are fast growing, some are slow growing, and a few may be able to withstand the chemo. So massive chemo is given then a SCT given.
The multiple myeloma repopulates the bone marrow, but this time with the more 'virulent' multiple myeloma cells. The next round of chemo is given and the next SCT is done. This time the SCT lasts (on average) about 1/2 as long as the first SCT, as the even stronger multiple myeloma cells have survived and populate the bone marrow.
To do another round of chemo and SCT is futile, it has been done in the past which is why they found out is was pretty much next to useless, as it had barely any effect on the multiple myeloma cells that had built up, yet put the patient through months of recovery.
Its the diminishing return principle - where the negatives from treatment outweighs the minor benefit to the patient.
Chemo knocks out fast growing cells, and not all the multiple myeloma cells are fast growing, some are slow growing, and a few may be able to withstand the chemo. So massive chemo is given then a SCT given.
The multiple myeloma repopulates the bone marrow, but this time with the more 'virulent' multiple myeloma cells. The next round of chemo is given and the next SCT is done. This time the SCT lasts (on average) about 1/2 as long as the first SCT, as the even stronger multiple myeloma cells have survived and populate the bone marrow.
To do another round of chemo and SCT is futile, it has been done in the past which is why they found out is was pretty much next to useless, as it had barely any effect on the multiple myeloma cells that had built up, yet put the patient through months of recovery.
Its the diminishing return principle - where the negatives from treatment outweighs the minor benefit to the patient.
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Salzmav
Re: Harvesting stem cells for more than 1 transplant
Hi there,
I had an SCT in 2010. Prior harvest produced enough stem cells for three transplants We didn't know beforehand how many stem cells would be harvested. My specialist advised me that remaining stem cells would be stored (free of charge) and used if necessary for future SCT's. This was in Australia.
I had 19 months remission from the 2010 SCT, so didn't really think of it as a failed treatment, though naturally a longer remission would have been good.
Currently I'm living in New Zealand and am on The Millenium Project drug trial. Tis a 7 year blind drug trial, utilising dex, lenalidomide (Revlimid), and a placebo / or experimental drug. No one knows who gets the placebo and who gets the experimental drug. Treatment is going well, though drug side effects take some getting used to.
In relation to future treatment, we (specialist and myself) have discussed the possibility of future SCT's using the harvested cells from Australia. So, I guess different specialists, and different patients, have different ideas, depending how treatment is going.
Cheers Karen
I had an SCT in 2010. Prior harvest produced enough stem cells for three transplants We didn't know beforehand how many stem cells would be harvested. My specialist advised me that remaining stem cells would be stored (free of charge) and used if necessary for future SCT's. This was in Australia.
I had 19 months remission from the 2010 SCT, so didn't really think of it as a failed treatment, though naturally a longer remission would have been good.
Currently I'm living in New Zealand and am on The Millenium Project drug trial. Tis a 7 year blind drug trial, utilising dex, lenalidomide (Revlimid), and a placebo / or experimental drug. No one knows who gets the placebo and who gets the experimental drug. Treatment is going well, though drug side effects take some getting used to.
In relation to future treatment, we (specialist and myself) have discussed the possibility of future SCT's using the harvested cells from Australia. So, I guess different specialists, and different patients, have different ideas, depending how treatment is going.
Cheers Karen
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kefrewin - Name: Karen Frewin NZ
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 53
Re: Harvesting stem cells for more than 1 transplant
Hi all,
Yes, I'm the nerd (or do I have ESP) that posted a separate question on getting a 3rd stem cell transplant. Wasn't trying to take this string and call it my own!! Ha ...
If your dad is producing enough stem cells, I'd try to get enough for 3. I don't know if there is a downside (barring insurance issues). I think (emphasis on think) that if you knew the 2nd SCT was going to be the last, they might just use the rest anyway? I seem to remember the doc saying that.
My first day didn't produce much, second day produced a lot, and went in for 3rd day of harvesting just in case.
So the answer to my question seems to be that if I do get a long response from the tandem transplants -- I'll talk to doc about what "long" is -- then I might be a candidate for the third ASCT. Or doc might think it wise to go for the donor transplant. Who knows?
Another factor with my myeloma is that I went through the Revlimid / dex / Velcade and 2 rounds of VD-PACE plus thalidomide, with a little Cytoxan sprinkled on top, and nothing worked for too long.
Melphalan (the one chemical of the bunch that was discovered many many years before), is the one that worked for me.
Thank you all for your very informative answers.
And good luck with your dad!
Yes, I'm the nerd (or do I have ESP) that posted a separate question on getting a 3rd stem cell transplant. Wasn't trying to take this string and call it my own!! Ha ...
If your dad is producing enough stem cells, I'd try to get enough for 3. I don't know if there is a downside (barring insurance issues). I think (emphasis on think) that if you knew the 2nd SCT was going to be the last, they might just use the rest anyway? I seem to remember the doc saying that.
My first day didn't produce much, second day produced a lot, and went in for 3rd day of harvesting just in case.
So the answer to my question seems to be that if I do get a long response from the tandem transplants -- I'll talk to doc about what "long" is -- then I might be a candidate for the third ASCT. Or doc might think it wise to go for the donor transplant. Who knows?
Another factor with my myeloma is that I went through the Revlimid / dex / Velcade and 2 rounds of VD-PACE plus thalidomide, with a little Cytoxan sprinkled on top, and nothing worked for too long.
Melphalan (the one chemical of the bunch that was discovered many many years before), is the one that worked for me.
Thank you all for your very informative answers.
And good luck with your dad!
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Stann
Re: Harvesting stem cells for more than 1 transplant
Hi NZMom ... I mean Mum,
I was also diagnosed with primary amyloidosis with myeloma. From what I read on the internet, I figured I was doomed. My myeloma specialist kept calmly telling me to ignore it and the multiple myeloma treatment would take care of the amyloidosis.
He's been right and it's been 5 years. I have another friend with the same diagnosis, and both of us are really glad we did the tandem transplants, and we are both living relatively normal lives.
I was also diagnosed with primary amyloidosis with myeloma. From what I read on the internet, I figured I was doomed. My myeloma specialist kept calmly telling me to ignore it and the multiple myeloma treatment would take care of the amyloidosis.
He's been right and it's been 5 years. I have another friend with the same diagnosis, and both of us are really glad we did the tandem transplants, and we are both living relatively normal lives.
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stann
Re: Harvesting stem cells for more than 1 transplant
Stage 3 diagnosis in December 2003 (age 43). First auto transplant at Stanford was in September 2004. Relapse began in 2008, had a second auto transplant at Stanford in April 2009. Appear to be relapsing again now.
Oncologist wants me to go to Stanford and talk about a 3rd transplant. I'm 54 now, in good enough shape to walk 3-4 rounds of golf per week. I, too, am curious what people are doing when they relapse in the post 10 year category.
Oncologist wants me to go to Stanford and talk about a 3rd transplant. I'm 54 now, in good enough shape to walk 3-4 rounds of golf per week. I, too, am curious what people are doing when they relapse in the post 10 year category.
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
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