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?

Hello out there!!
I just had to switch off Revlimid because I broke out with terrible hives, and now my oncologist wants me to try Carfilzomib. Has anyone out there been on or is being treated with this drug. If so then I would love your feedback!!
Pros and Cons.

Diagnosed in 2003. Started with Revlimid. When it stopped working in was diagnosed 2003.it was watch and wait. Doc put me on Revlimid. Took for about 10 years and it stopped working. 2020 went on infusion of daratubamab with shot of velcade. Then was on Dara in shot form for maintenance. This past spring started carfilzomib infusion with Dara in shot form. Numbers are going up again and Pomalidomide is next step. Have appt with oncologist this week to discuss new regime. I understand this new… read more

I am taking Daratumumab+Dexamethasone for SMM and AL Amyloidosis. Has anyone else taken Daratumumab+ Dexamethasone alone for SMM or AL Amyloidosis or both? Or does anyone take Daratumumab + another single drug for them? If so what? If you take a triplet also let me know what please.

Hi Everyone I’ve been taking 2 mg of Pomalyst since the end of March and my igg numbers have come down very slowly but the last 3 months they’ve been fluctuating up and down so I know my Dr is going to increase my Pomalyst to 3 mg does anyone here take 3 mg? I’m just wondering if there was any significant side effects when taking the higher dosage. Hope everyone is having a great holiday weekend.

Has anyone been treated with the above combo doctor is putting me on this starting tomorrow. It was either that or the Car T treatment. I’m so not ready for.

Thanks Everyone!

Susan

Can anyone tell me what it takes to get through the criteria for being eligible for CAR-T. What constitutes 1 "line of treatment" and how sick must I get to move on to the next one? Can side effects I don't want to live with disqualify a "line of treatment" or must I show worsening symptoms/labs? Currently we are required to have 4 lines fail and try at least 1 drug each from a list of 3 kinds (IMiD, proteosome inhibitor and anti-CD38 antibody) but CAR-T still looks like your best chance to get… read more

About 4 months ago my Daratumamab/Revlimid combination stopped working(my Lambda Light Chain numbers went weigh up). My doctor switched me to Elotuzumab/Pomalyst. It temporarily stabilized the increase but now I'm up to 108(max normal is 26), my highest in 3 years. I believe another option is Carfilzomib. As anyone used this after failing others? Feel like I'm running out of options. Will see my doctor next week.