My brother has multiple myeloma and has taken a turn for the worst. He went in for a stem cell transplant at the end of September but could not do it.
While on CyBorD (cyclophosphamide, Velcade, dexamethasone), his numbers were great. Two weeks prior to harvesting stem cells and two weeks after, he was not on any treatment and no blood work was taken.
It turns out that his myeloma came back very aggressively. It is worse now than when he was diagnosed in April (IgG was 4300 and is now 5900). Doctors now have him on Revlimid / dex and Kyprolis. He has been very agitated and volatile. He also is in an extreme amount of pain. It turns out that he has fractured his hip.
They are thinking of doing a stem cell transplant using the stem cells from an umbilical chord. There are many risks to this, and they still do not know if this is the right path.
I had such high hopes for the first transplant, but they quickly were erased, and now I don't think we are in a good position.
Have you ever heard of this treatment and what were the outcomes?
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Re: Are we being pessimistic?
Hello Arrowhead,
I'm sorry to hear about your brother's myeloma and how aggressive it appears to be.
Your brother's doctors seem to be doing the right thing by putting him on the Kyprolis, Revlimid, dex combination given that his myeloma developed resistance to Velcade, Cytoxan, and dex. Revlimid is a completely different drug than what he has been treated with so far. And Kyprolis, although it is in the same class of drugs as Velcade, often works in patients who have stopped responding to Velcade. The combination of Kyprolis, Revlimid, and dex is generally viewed as very effective therapy.
Umbilical cord blood transplants are not done very often in myeloma patients, so there is not much information out there about it. Someone else recently asked a question about it here in the forum. You can see the discuss so far here:
https://myelomabeacon.org/forum/umbilical-cord-blood-transplant-t4224.html
There are also some references and links there that will help you find out more about it.
Umbilical cord transplantation is a special type of allogeneic (donor) transplant, but I think it fair to say that, as with all allo transplants, your brother's chances of responding well to the transplant will be greater the deeper his response to the treatment he receives prior to the cord blood transplant. So it would not surprise me if his doctors have him take the Kyprolis, Revlimid, dex combination for a number of cycles as long as his numbers keep improving while he is on it.
I also wonder if they may suggest having him do an auto stem cell transplant prior to his doing the cord blood transplant, to deepen his response to treatment even further before the cord blood transplant. I'm not knowledgeable enough, though, to know whether his hip fracture complicates things for either type of fracture.
Is your brother being treated at a cancer center that has doctors who specialize in myeloma? Given the aggressiveness of his disease, that would be something very important to ensuring he is getting the best care.
Good luck!
I'm sorry to hear about your brother's myeloma and how aggressive it appears to be.
Your brother's doctors seem to be doing the right thing by putting him on the Kyprolis, Revlimid, dex combination given that his myeloma developed resistance to Velcade, Cytoxan, and dex. Revlimid is a completely different drug than what he has been treated with so far. And Kyprolis, although it is in the same class of drugs as Velcade, often works in patients who have stopped responding to Velcade. The combination of Kyprolis, Revlimid, and dex is generally viewed as very effective therapy.
Umbilical cord blood transplants are not done very often in myeloma patients, so there is not much information out there about it. Someone else recently asked a question about it here in the forum. You can see the discuss so far here:
https://myelomabeacon.org/forum/umbilical-cord-blood-transplant-t4224.html
There are also some references and links there that will help you find out more about it.
Umbilical cord transplantation is a special type of allogeneic (donor) transplant, but I think it fair to say that, as with all allo transplants, your brother's chances of responding well to the transplant will be greater the deeper his response to the treatment he receives prior to the cord blood transplant. So it would not surprise me if his doctors have him take the Kyprolis, Revlimid, dex combination for a number of cycles as long as his numbers keep improving while he is on it.
I also wonder if they may suggest having him do an auto stem cell transplant prior to his doing the cord blood transplant, to deepen his response to treatment even further before the cord blood transplant. I'm not knowledgeable enough, though, to know whether his hip fracture complicates things for either type of fracture.
Is your brother being treated at a cancer center that has doctors who specialize in myeloma? Given the aggressiveness of his disease, that would be something very important to ensuring he is getting the best care.
Good luck!
Re: Are we being pessimistic?
Hi Ian,
Two great posts with respect to transplants, both here and in the other thread.
https://myelomabeacon.org/forum/umbilical-cord-blood-transplant-t4224.html#p24630
You wrote:
I could not agree more. Note the last sentence of the abstract in the other thread:
For those not familiar, the term plateau means that a group of the patients that did the transplant in complete response are likely cured.
One of the reasons they may want to go right from a drug combo like Kyprolis / Revlimid / dex right into the allo is to avoid the 2-3 months treatment gap that typically occurs in a tandem auto-allo. Note how fast his numbers rose with the 4 week treatment break. SInce he was using an alkylator (Cytoxan) as part of his induction, the doctors may be concerned of a quick relapse off the high dose alkylator (melphalan) used for auto.
I ended up doing a tandem auto-allo for insurance purposes, but the original plan was to do a Velcade-based triplet right into an allo with myeloablative conditioning. The tandem auto-allo first started because a decade ago, myeloma induction therapies rarely got patients into CR. An auto was basically the only chance to get a patient into CR before the allo prior to the novel agents. In my case, if the auto did not get me to CR, I would have gone back on a Velcade based triplet to get me to CR prior to my allo.
Positive vibes being sent your brother's way, Arrowhead. I was diagnosed with high-risk disease 4 years ago and my life is back to normal. I spent two weeks in the hospital with 3 compression fractures, blood clot in leg, fungal pneumonia, etc after being diagnosed. I did not believe my doctor when she told me I could have my "old life" back, but fortunately for me it has turned out that way. Good immunotherapy like allogeneic transplants can work wonders!
Mark
Two great posts with respect to transplants, both here and in the other thread.
https://myelomabeacon.org/forum/umbilical-cord-blood-transplant-t4224.html#p24630
You wrote:
Umbilical cord transplantation is a special type of allogeneic (donor) transplant, but I think it fair to say that, as with all allo transplants, your brother's chances of responding well to the transplant will be greater the deeper his response to the treatment he receives prior to the cord blood transplant. So it would not surprise me if his doctors have him take the Kyprolis, Revlimid, dex combination for a number of cycles as long as his numbers keep improving while he is on it.
I could not agree more. Note the last sentence of the abstract in the other thread:
"We obtained a long-term plateau among patients in complete remission, which makes dUCBT a promising treatment strategy for these patients."
For those not familiar, the term plateau means that a group of the patients that did the transplant in complete response are likely cured.
One of the reasons they may want to go right from a drug combo like Kyprolis / Revlimid / dex right into the allo is to avoid the 2-3 months treatment gap that typically occurs in a tandem auto-allo. Note how fast his numbers rose with the 4 week treatment break. SInce he was using an alkylator (Cytoxan) as part of his induction, the doctors may be concerned of a quick relapse off the high dose alkylator (melphalan) used for auto.
I ended up doing a tandem auto-allo for insurance purposes, but the original plan was to do a Velcade-based triplet right into an allo with myeloablative conditioning. The tandem auto-allo first started because a decade ago, myeloma induction therapies rarely got patients into CR. An auto was basically the only chance to get a patient into CR before the allo prior to the novel agents. In my case, if the auto did not get me to CR, I would have gone back on a Velcade based triplet to get me to CR prior to my allo.
Positive vibes being sent your brother's way, Arrowhead. I was diagnosed with high-risk disease 4 years ago and my life is back to normal. I spent two weeks in the hospital with 3 compression fractures, blood clot in leg, fungal pneumonia, etc after being diagnosed. I did not believe my doctor when she told me I could have my "old life" back, but fortunately for me it has turned out that way. Good immunotherapy like allogeneic transplants can work wonders!
Mark
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Mark11
Re: Are we being pessimistic?
I don't understand. If he couldn't do a SCT with his own cells, why could he do one with other stem cells? Would an allo be possible?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
4 posts
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