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

Kyprolis not working?

by jlyurko on Fri Jan 12, 2018 11:57 am

Hi everyone,

My brother was diagnosed in 2015. He has had a stem cell transplant and been treated with Revlimid, Velcade, and dexamethasone, which has recently stopped working.

They tried Pomalyst, Velcade, and dex, which didn't seem to work at all. He ended up in the hospital with high creatinine 3.9 and calcium of 15. He's been there for 2 weeks.

They started him last week on Kyprolis, with infusions on Thursday and Friday. By Sunday, his calcium was 10.6 and creatinine was 2.6. The calcium has been rising since then and is now back to 13. He had his infusion of Kyprolis yesterday and has started back on the dex. Does this mean that the Kyprolis is not working? How long does it usually take to really bring the numbers back down and keep them there for a while?

I'm worried he's running out of options.

Thanks,
Jen

jlyurko
Name: Jen
Who do you know with myeloma?: Brother
When were you/they diagnosed?: 9/15
Age at diagnosis: 46

Re: Kyprolis not working?

by Mark Pouley on Fri Jan 12, 2018 1:23 pm

First off, try not to worry (it doesn't really help). Your brother has several options beyond Kyprolis to fight multiple myeloma at this time. While we are not lucky to have the disease, we are lucky the science and research has given us so many options to help us stay with the ones we love.

For me, my initial therapy of Revlimid, Velcade, and dexamethasone (RVD) really didn't work past about 3 cycles, and I was moved to Kyprolis, Pomalyst, and dex (KPD). I didn't see a significant drop in my M-spike for about a month and a very substantial drop in about 3 months. While it may not work for him, Kyprolis appears to be a very effective treatment for many myeloma patients. Just give it some time.

Good luck. Your brother is lucky to have you watching out for him.

Mark Pouley
Name: Mark
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2015
Age at diagnosis: 53

Re: Kyprolis not working?

by jlyurko on Sat Jan 13, 2018 10:54 am

Mark,

Thank you so much for your reply. It really makes me feel better!

Jen

jlyurko
Name: Jen
Who do you know with myeloma?: Brother
When were you/they diagnosed?: 9/15
Age at diagnosis: 46

Re: Kyprolis not working?

by Dano on Sun Jan 28, 2018 12:26 pm

Just like myeloma is different for each patient, the response to treatment will be equally different, both in rate of response and efficacy. I think it may be a little early in your brother's treatment with Kyprolis to say whether it’s working or not. I would think an SPEP every six weeks should give you some idea how the myeloma is responding to Kyprolis.

I started Kyprolis and dexa­meth­a­sone in February of 2015 with an M-spike on 1.0 g/dL. By July of 2015 my M-spike had gone down to 0.4 g/dL and has held steady at that level for the past 2 and a half years. My initial regimen was two infusions a week for three weeks, one week off, and repeat. I was on that regimen for two years. I am now getting two infusions a week every other week.

Good luck

Dano
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2014
Age at diagnosis: 65


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