“Kyprolis (carfizomib), Proteasome Inhibitor. Symptoms, Side Effects, Did You Improve? How Long? How Are You Feeling? (before, During After? | MyMyelomaTea

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“Kyprolis (carfizomib), Proteasome Inhibitor. Symptoms, Side Effects, Did You Improve? How Long? How Are You Feeling? (before, During After?
A MyMyelomaTeam Member asked a question 💭

I would like to learn: who are or were treated with “Kyprolis (carfizomib), Proteasome inhibitor. Symptoms, side effects, did you improve? How long? How are you now? (before, during after?

posted October 23, 2023
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A MyMyelomaTeam Member

So you are in a proteasome inhibitor CARFILZOMIB (generic of Kyprolis. Proteasome inhibitor Combined with POMALYST (immune modulator ) and Dex (?), (Decadron Dexamethosone (steroid), after Relapsing with the monoclonal antibody (daratumumab generic of Darzalex.
Thanks for your great input.
Please keep posted your journey after, and how you feel etc.

posted October 23, 2023
A MyMyelomaTeam Member

I started in February no side effects but results is real slow as far as getting back into remission getting ready to do a second opinion on the 11/6/23 because my doctor wants me to go with pomalyst but I want to go back and do cytoxan velcade and Dexamethasone which has got me in remission twice and last for at least a year both times but my doctor is telling me if I don't do Revlimid orPomalyst I might not be able to do any new treatments that come out later and that is why I'm going to get the second opinion but when I take the Kyprolis and the Dexamethasone my light change goes back up or remain the same until I get the faspro which is Darzalex which takes my number down but being I get once a cycle I can't get in remission because the Kyprolis is not strong enough to work by itself so that's why I'm getting a second opinion on doing the cytoxan and velcade and Dex which worked and they you can go back to that treatment after being off it for six months and I'm going on eight months so I'm good but my doctor feels that I need to do Revlimid or Pomalyst which both has a lot of side effects and my wife is not feeling either one of them so we're going to get the second opinion

posted October 23, 2023
A MyMyelomaTeam Member

Went on Carfilzomib, Pomalyst, Dex after relapsing with Darzalex. Started early 2022 and now showing signs of remission once again after 17 months. Had more side affects with this treatment than any other although minor. Rash, occasional blurry vision, and shortness of breath. On 14 day cycle and once off Pomalyst for two weeks, rash and blurred vision seem to go away. Shortness of breath is biggest pain and comes and goes with treatment cycle.

posted October 23, 2023
A MyMyelomaTeam Member

Thanks so much. And what type of Myeloma you are? And what are your numbers in ratio… are smoldering myeloma? What criteria is using to follow your numbers?

posted October 23, 2023
A MyMyelomaTeam Member

I took 2 treatments of kyprolis and My heart went into afib. So now I have blood Thinner xralto
That made me have a blood bleed in my knee
And now I can't walk. Probably will have to get a new knee if they ever figure out how to make my light chains go down. Really got me in a mess

posted November 19, 2023

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