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

Kyprolis (carfilzomib) - dex clinical trial

by OlgaMM on Mon May 18, 2015 4:02 pm

Hello.

I am about to take part in a clinical trial of Kyprolis (carfilzomib) plus dex as a first line of treatment. No other anti-myeloma agents will be involved. I am 60 years old and had been smoldering for 7 years. My myeloma specialist feels that my disease (I have IgA lambda) has progressed enough to begin treatment, though he considers it to be indolent myeloma.

Is anyone out there involved in the current clinical trial or has had experience taking just Kyprolis and dex as a first line of treatment? What was / is your experience in terms of side effects and results? Were / are you also taking bisphosphonates?

Your help would be greatly appreciated.

Olga

OlgaMM
Name: OMS
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
Age at diagnosis: 53

Re: Kyprolis (carfilzomib) - dex clinical trial

by Multibilly on Mon May 18, 2015 5:38 pm

Hi Olga,

I'm not aware of a current clinical trial that uses only Kyprolis for smoldering multiple myeloma. The only ones I know of also use lenalidomide (Revlimid). Which trial are you participating in?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Kyprolis (carfilzomib) - dex clinical trial

by OlgaMM on Mon May 18, 2015 6:55 pm

Hello, Multibilly.

The trial is for multiple myeloma patients who have not been previously treated. It is the Car-BiRD trial at Weill-Cornell Medical College in New York. The specialist believes I qualify for the trial, which would mean I have full-blown multiple myeloma.

But you make a good point. Perhaps the "indolent myeloma" label applied before all the test results were back. It is one of the questions I have for the doctor.

Olga

OlgaMM
Name: OMS
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
Age at diagnosis: 53

Re: Kyprolis (carfilzomib) - dex clinical trial

by Multibilly on Mon May 18, 2015 7:07 pm

Olga,

OK, now I get it. You will start off on Kyprolis + dex and then graduate to BiRD:

"A Phase II Study of Sequential Carfilzomib, Clarithromycin, Lenalidomide, and Dexamethasone (Car-BiRD) Therapy for Subjects with Newly Diagnosed Multiple Myeloma"

Are you decided on whether you would take the trial's transplant option or instead go on to maintenance?

I know there are quite a few folks on this forum that have some experience with carfilzomib (Kyprolis), so I hope you get some good responses on their reactions to it.

Best of luck with this trial and thanks for participating in it.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Kyprolis (carfilzomib) - dex clinical trial

by OlgaMM on Mon May 18, 2015 11:00 pm

Hello again, Multibilly.

I have not really thought so far ahead as to consider whether or not I would have a transplant at the end of the trial. I'm afraid my head is still spinning from my having gone from smoldering to needing treatment just 3 weeks ago.

Thank you for your good wishes.

Olga

OlgaMM
Name: OMS
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2008 - SMM, 2015 - multiple myeloma
Age at diagnosis: 53


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