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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Treatments for late-stage multiple myeloma?

by rachaelginge on Mon Nov 09, 2015 1:32 pm

Hello,

I am new to this website but hoping for some information from recent patients with multiple myeloma.

My mother has had myeloma for nearly 7 years and is currently on her third relapse. She has had two stem cell transplants and has been told she can't have a third. She has been on Velcade, Revlimid, pomalidomide (Pomalyst, Imnovid), dexamethasone and other tablets for side effects of the drugs.

The pomalidomide has not stopped working and the consultant has said as a last hope she is going on cyclophosphamide.

Is there any other treatments others have used to help prolong the cancer?

Also, has anyone had Revlimid twice?

Thanks in advanced!
X

rachaelginge

Re: Treatments for late-stage multiple myeloma?

by BeatMyeloma on Mon Nov 09, 2015 3:52 pm

I'm sorry to hear about your mother's relapses! Is your mother seeing a myeloma specialist? I ask because I'm surprised to hear they haven't considered a clinical trial – there are lots of excellent trials out there.

BeatMyeloma
Name: BeatMyeloma
Who do you know with myeloma?: My mother
When were you/they diagnosed?: Jan. 2008
Age at diagnosis: 54

Re: Treatments for late-stage multiple myeloma?

by Bar-none on Mon Nov 09, 2015 5:40 pm

Hi, I would ask your myeloma specialist about a trial as well. I'm not a Dr but these are two that are often mentioned.

Here, for example, is a link to all open daratumumab trials for myeloma in the US.

https://clinicaltrials.gov/ct2/results?term=Daratumumab&recr=Open

And here's a link to all open elotuzumab trials for myeloma in the US.

https://clinicaltrials.gov/ct2/results?term=Elotuzumab&recr=Open

Best! BN

Bar-none
Who do you know with myeloma?: Me
When were you/they diagnosed?: 3/14

Re: Treatments for late-stage multiple myeloma?

by Ron Harvot on Mon Nov 09, 2015 7:11 pm

Of the drugs that you mentioned, I did not see Carfilzomib (Krypolis) which is related but somewhat different to Velcade. Both of the drugs are Proteasome inhibiters. Many people that become refractory to Velcade or suffered severe peripheral neuropothy (PN), have had success with Krypolis without the PN side effects. Combining Krypolis with Revlimid and Dex appears to work with a lot of people that were refractory to Revlimid and Velcade. So it is worth exploring. The other drug is Panobinostat which was recently approved by the FDA. It works differntly and can be combined with Krypolis.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56


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