[mikko1965]

Should I start treatment with Kyprolis?

by mikko1965 on Tue Jan 12, 2016 7:28 pm

Hello All,

I'm receiving a lot of pressure from my oncologists to start treatment with Kyprolis (carfilzomib), although I had a horrible response to Velcade (first line) and have endocarditis from it. It has just recently been approved in Canada.

Intuitively, my sense is this class of drug (proteasome inhibitor) is not for me, but IMiDs (Revlimid, Pomalyst) nor melphalan have been effective, and so I'm wondering if anyone has any insight.

I am FLC lambda (in the 8000s now after having never gone above 1000 pre autologous stem cell transplant in July 2015), t(4;14) and diagnosed September 2014.

My GP, who practices integrative therapy, feel strongly that I should start intravenous vitamin C therapy.

Thanks in advance for any insight anyone may have.

[JPC]

Re: Should I start treatment with Kyprolis?

by JPC on Tue Jan 12, 2016 10:48 pm

Given the lambda that you quoted, I would seriously consider starting Kyprolis, but as an alternative, if available in your geographic region, one of the Mab's (elotuzumab or daratumumab) or Pomalyst.

Kyprolis side effect profile is completely different from Velcade. It does not cause many of the side effects that Velcade has, but potentially causes other side effects.

Good luck to you, Mikko.

[Multibilly]

Re: Should I start treatment with Kyprolis?

by Multibilly on Wed Jan 13, 2016 4:36 pm

With regard to vitamin C, see this forum thread:

"High dose intravenous vitamin C" (started March 16, 2014)

[Dano]

Re: Should I start treatment with Kyprolis?

by Dano on Thu Jan 14, 2016 12:15 am

Mikko,

I have been on Kyprolis for 12 cycles with very good control of my IGg Kappa myeloma. With proper monitoring, there is good reason to follow your oncologist,s recommendation. I have an SPEP and UPEP every 90 days and an echo cardiogram every six months.

I have the highest regard for my GP; however, multiple myeloma is a rare and complicated cancer and treatment needs to be managed by a myeloma specialist if one expects positive outcomes.

The Mayo Clinic has an excellent article on the subject of high-dose vitamin C http://www.mayoclinic.org/drugs-supplements/vitamin-c/safety/hrb-20060322.

Do your homework carefully before you submit to the use of high dose IV Vitamin C.

Best of luck.

[Nancy Shamanna]

Re: Should I start treatment with Kyprolis?

by Nancy Shamanna on Thu Jan 14, 2016 9:46 am

Hi Mikko, I just noticed your post and that you are in Canada. If you don't mind me asking, are you referring to Kyprolis being approved by Health Canada and receiving a DIN (Drug Identification Number)? Kyprolis is now being reviewed by CADTH, as to whether it is recommended to be funded by the provinces. If it is approved at the Health Canada level, would you be receiving it thru a private insurer, such as SunLife or GreatWest Life?

Thanks for info if you feel like sharing it.

Also, on reading the post from Multibilly about high dose injected vitamin C, if I am reading this correctly, it might have worked in 'mouse models', which is not the same as saying it has been approved in human models, or approved for use either. Do you concur with this, Multibilly?

Thanks for any info.

[Multibilly]

Re: Should I start treatment with Kyprolis?

by Multibilly on Thu Jan 14, 2016 1:21 pm

Hi Nancy,

I cited a couple of sources, one which involved human models, and one which involved mouse studies. I would also underscore Dano's Mayo reference (http://www.mayoclinic.org/drugs-supplements/vitamin-c/safety/hrb-20060322).

What I'm basically trying to say is that I think it would be prudent to discuss IV vitamin C therapy in depth with a multiple myeloma specialist rather than only going on the recommendation from a GP (regardless of how talented that GP is). Just my two cents ...

[philatour]

Re: Should I start treatment with Kyprolis?

by philatour on Sun Jan 17, 2016 1:12 am

Consider asking about Cytoxan. My husband has lambda light chain only (gamma), a complex karyotype, and ongoing renal impairment. Once he relapsed after 9 months post stem cell transplant (SCT), Cytoxan has been the one drug which knocks the light chains down. After a month or two, though, they start to climb rapidly. The other combinations (imid drugs, proteasome inhibitors, monoclonal antibodies) have been discontinued after relatively short periods of time due to disease progression. Kyprolis has been linked to some cardiac issues, so ask for more information about them, given your endocardiac residual from Velcade.

Hope your experience with ongoing treatment is superior to ours. Best of luck.