From the research I have found and from advice of my stem cell transplant doctor, it sounds like I am not a good candidate for a second stem cell transplant because I never really achieved a complete remission and my cancer has been aggressively active since 10 months of first transplant. I am on Medicare so an allo transplant is financially not an option.
Has anyone else had similar experience and can provide comment / insight?
I am young (55) with end organ damage limited to a few compression fractures that are stable, the usual assortment of bone lesions, and anemia that is not that bad (I still do half marathons at a jog).
In search of options that control disease without tanking my blood counts so bad - Velcade, Pomalyst, dex leave me neutropenic, anemic and with bad platelet. (Cure would be nice too, in case someone has one in back pocket.) Am I SOL on consolidation therapies with stem cell recovery?
Dex night, so I hope post is coherent.
Forums
5 posts
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Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Relapsing soon after SCT - Similar experiences? Advice?
Hi Andy,
I hope you find the right drug combination. I started to relapse 60 days post auto transplant. First, RVD [Revlimid, Velcade, dex] was tried, then Pomalyst, Kyprolis and dex. My disease started attacking my bones with new plasmacytomas and pain while I was on that for a cycle and a half.
Now I am on Doxil, Velcade, dex, and Cytoxan. We will being adding Revlimid. My numbers are stable but I am having new plasmacytomas.
My case is extreme, but there are quite a few drug combinations to try out. Have you had a meeting with your specialist to find out which future options are available?
Best of luck to you
I hope you find the right drug combination. I started to relapse 60 days post auto transplant. First, RVD [Revlimid, Velcade, dex] was tried, then Pomalyst, Kyprolis and dex. My disease started attacking my bones with new plasmacytomas and pain while I was on that for a cycle and a half.
Now I am on Doxil, Velcade, dex, and Cytoxan. We will being adding Revlimid. My numbers are stable but I am having new plasmacytomas.
My case is extreme, but there are quite a few drug combinations to try out. Have you had a meeting with your specialist to find out which future options are available?
Best of luck to you
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Relapsing soon after SCT - Similar experiences? Advice?
Hi Andy,
Sorry to hear that your myeloma seems to be a bit on the aggressive side.
You mention that you an allo transplant is not an option due to Medicare limitations. I've not looked into it a lot, but is it possible that you could do an allo transplant as part of a clinical trial, and therefore avoid some (or most) of the cost?
I did a quick search on "allogeneic" and "myeloma" at clinicaltrials.gov and came up with a pretty decent list of open trials:
http://clinicaltrials.gov/ct2/results?term=allogeneic+myeloma&recr=Open
Now, I don't exactly know how these trials work in terms of the cost of the transplants. Maybe you still would be required to cover a lot of the costs. But that's something you might want to investigate.
If you do look into it and find anything out, please post back what you find out, as I would be interested to know.
Sorry to hear that your myeloma seems to be a bit on the aggressive side.
You mention that you an allo transplant is not an option due to Medicare limitations. I've not looked into it a lot, but is it possible that you could do an allo transplant as part of a clinical trial, and therefore avoid some (or most) of the cost?
I did a quick search on "allogeneic" and "myeloma" at clinicaltrials.gov and came up with a pretty decent list of open trials:
http://clinicaltrials.gov/ct2/results?term=allogeneic+myeloma&recr=Open
Now, I don't exactly know how these trials work in terms of the cost of the transplants. Maybe you still would be required to cover a lot of the costs. But that's something you might want to investigate.
If you do look into it and find anything out, please post back what you find out, as I would be interested to know.
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Jonah
Re: Relapsing soon after SCT - Similar experiences? Advice?
Hi Andy,
Can you give some details on what treatments you've received and how you've reacted to them? The next step you take almost definitely will depend on what you had as induction therapy, how you responded to it, whether you had maintenance therapy after your stem cell transplant, etc.
Can you give some details on what treatments you've received and how you've reacted to them? The next step you take almost definitely will depend on what you had as induction therapy, how you responded to it, whether you had maintenance therapy after your stem cell transplant, etc.
Re: Relapsing soon after SCT - Similar experiences? Advice?
Hi Andy
I am sorry to hear that you are met with this challenging set of circumstances. Although the blood counts can be tricky to manage when patients relapse post transplant, with growth factor (Neupogen, G-CSF) and / or transfusional support (blood and / or platelets), sometimes we can get support patients through initial rounds of chemotherapy and if there is a response, the blood counts can get better.
The choice of drugs indeed will depend on prior therapy, but the carfilzomib [Kyprolis] in combination with lenalidomide [Revlimid] / dex or pomalidomide [Pomalyst] / dex (+ supportive care) would be reasonable.
A study that includes one of the new anti-CD38 antibodies [daratumumab, SAR650984, or MOR202] or anti-CS-1 [elotuzumab] would also be reasonable (if blood counts don't exclude you). And the good news is that these treatments may become available in the not too distant future.
If these treatments temporize your disease, perhaps the Medicare laws (which are actively being challenged) will change. The good news from your post is that you seem to be healthful otherwise. While the myeloma and treatment toxicity you experience are often difficult to control, the way you maintain your strength and energy (by exercising and making healthy choices) impacts how you handle and recover from therapy ... so keep it up!
Best!
I am sorry to hear that you are met with this challenging set of circumstances. Although the blood counts can be tricky to manage when patients relapse post transplant, with growth factor (Neupogen, G-CSF) and / or transfusional support (blood and / or platelets), sometimes we can get support patients through initial rounds of chemotherapy and if there is a response, the blood counts can get better.
The choice of drugs indeed will depend on prior therapy, but the carfilzomib [Kyprolis] in combination with lenalidomide [Revlimid] / dex or pomalidomide [Pomalyst] / dex (+ supportive care) would be reasonable.
A study that includes one of the new anti-CD38 antibodies [daratumumab, SAR650984, or MOR202] or anti-CS-1 [elotuzumab] would also be reasonable (if blood counts don't exclude you). And the good news is that these treatments may become available in the not too distant future.
If these treatments temporize your disease, perhaps the Medicare laws (which are actively being challenged) will change. The good news from your post is that you seem to be healthful otherwise. While the myeloma and treatment toxicity you experience are often difficult to control, the way you maintain your strength and energy (by exercising and making healthy choices) impacts how you handle and recover from therapy ... so keep it up!
Best!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
5 posts
• Page 1 of 1