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.
Hi yes this is Jeff I'd take a dog for that with Dex and metazone for your information. It seems to be working fine!
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
Thanks for answering. In the meantime my oncologist had me see the doctor in the transplant dept. Although am not a candidate for stem cell or Cart T procedures he has started me on teclistamab… 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.
I take Dara, revlimed, and dexamethasone for smm
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.
Happy rebirthday Martha🎂🎉
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
You are amazing. They keep changing treatment on you and you continue to March on. I hope this one sticks for a while.
I was on Carfilziomib in 2017. It did not work on my myeloma. It did make my blood pressure go up a little.
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
Samar I'm really sorry to hear your transplant didn't work, that is rough news. I am so hopeful for CAR-T, this disease is a waking nightmare and I am hating how many terrible drugs they make us take… 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.
Mark, the only two side effects were temperature of 102 for one day and keeping food in. I needed to lose weight, but of course that wasn't the way to lose it. So they weren't serious. I was 76… read more