Dear Readers,
History - Last April, diagnosis at age 54. Radiation to get rid of the T-11 tumor, induction with Revlimid, Velcade, and dex (RVD), stem cell transplant (SCT) in September, and currently off the meds with a VGPR response.
All labs are great except they can detect the M protein in my urine - but too small to measure and I'm feeling like myself again.
Did OK with the Velcade except for the neuropathy that is pretty much gone. Dex was manageable, but the Revlimid started to shut down my liver, so was discontinued. Liver is fine now.
Since most maintenance therapy includes Revlimid, I have to look at different options since I'm ineligible for a liver transplant. We are looking at some of the antibody drugs, such as elotuzumab, and wondering if any of you folks have input on this line of therapy?
Thank you,
Erin
Forums
3 posts
• Page 1 of 1
Re: Elotuzumab as maintenance therapy
Hi Erin,
Elotuzumab is not yet approved by the FDA, so you can only be treated with it if you enroll in a clinical trial that is testing it, or if you apply to get compassionate use access to it.
I don't believe there are any trials of elotuzumab that are currently open that involve testing it as maintenance therapy. You can check yourself at this list of open elotuzumab trials for myeloma patients:
Unfortunately, it's also the case that none of the other monoclonal antibodies that have been tested as myeloma therapies, such as daratumumab, SAR650984, and MOR202, are FDA approved either. So, once again, you can only be treated with them in a clinical trial or under compassionate use, and, once again, I don't think any of them are being tested as maintenance therapies.
You could wait to try the drugs as maintenance therapy once they are approved by the FDA, which could happen with some of the monoclonal antibodies within the next year or so. However, it's not clear you could convince your insurance company to cover the drugs for use as maintenance therapy, since they haven't even been tested as maintenance therapies.
I wish I had better news for you, but I hope this clarifies things a bit.
Why aren't you considering Velcade maintenance?
Good luck!
Elotuzumab is not yet approved by the FDA, so you can only be treated with it if you enroll in a clinical trial that is testing it, or if you apply to get compassionate use access to it.
I don't believe there are any trials of elotuzumab that are currently open that involve testing it as maintenance therapy. You can check yourself at this list of open elotuzumab trials for myeloma patients:
Unfortunately, it's also the case that none of the other monoclonal antibodies that have been tested as myeloma therapies, such as daratumumab, SAR650984, and MOR202, are FDA approved either. So, once again, you can only be treated with them in a clinical trial or under compassionate use, and, once again, I don't think any of them are being tested as maintenance therapies.
You could wait to try the drugs as maintenance therapy once they are approved by the FDA, which could happen with some of the monoclonal antibodies within the next year or so. However, it's not clear you could convince your insurance company to cover the drugs for use as maintenance therapy, since they haven't even been tested as maintenance therapies.
I wish I had better news for you, but I hope this clarifies things a bit.
Why aren't you considering Velcade maintenance?
Good luck!
Re: Elotuzumab as maintenance therapy
Thank you Cheryl for the reply.
It would be in a clinical trial setting - where my doctor is the investigator. We are looking at Velcade, but it caused pretty sever neuropathy in a very short time. Since I have avoided pharmaceuticals for most of my life, it appears that I'm particularly sensitive to them. It is difficult to resume taking any drugs at this time when results are good and I'm feeling like me again, but certainly don't want to bury my head in the sand. We are looking at all options and looking for feedback about them.
Really appreciate you taking the time with your thoughts.
Be well,
Erin
It would be in a clinical trial setting - where my doctor is the investigator. We are looking at Velcade, but it caused pretty sever neuropathy in a very short time. Since I have avoided pharmaceuticals for most of my life, it appears that I'm particularly sensitive to them. It is difficult to resume taking any drugs at this time when results are good and I'm feeling like me again, but certainly don't want to bury my head in the sand. We are looking at all options and looking for feedback about them.
Really appreciate you taking the time with your thoughts.
Be well,
Erin
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Erin Heymann
3 posts
• Page 1 of 1
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