Ed's oncologist has said this would be the next treatment for his MM. (diagnosed 2016, had a SCT in 2017, been on Rev, Dara and pomylist, and for the past year and a half, Dara and Ninlaro). His kappa #s are creeping up, but Oncologist doesn't want to change just yet. We asked about Elranatamab and Talquetamab and he said they were too complicated, but what he told us about Cytoxin seemed more complicated than what we have read about either of the two newly approved ones. Just looking for… read more
Ed had his blood test Monday. Results today. All numbers good, but Lite Chains;went up 100 points. Message from Dr G. says give it some time to work with Dara. Those numbers going up scare him
doctor will change my treatment to : cyclophospgamide(cytoxan) pomalyst , darzalex and dexamethasone . any of you took cytoxan and pomalyst? those are new for me,is there any side effects?thanks
I am approved for a SCT. Today I went to get my decision from the commission. They want to collect cells before the holidays and freeze them, and the transplant itself to be after the New Year. It's strange to me though that they told me they wanted to administer chemotherapy during the stem cell collection, I quote what the doc said: "Collection cells/chemotherapy/cell collection again"
Isn't the chemotherapy done immediately before the transplant itself? Have any of you had this type of cell… read more
I had a series of shots to open up the bones to help the stem cells out. The cells were harvested In two days, I needed 3 million, I had extra they banked. I went home for the weekend. I had another… read more
Im getting my stem cells harvested next month. Does someone have to be with me or can they sit with me while it’s being done? Thanks
Unless they give you high dose Cytoxan before harvesting. My center did. Never doing that again 🤨
Yes !
I was given it, take 20mg an hour before with premeds on Dara injection days. When I needed a refill it says 20mg 1st and 2nd day at beginning of cycle. First the NP said it was right- then I asked doctor, he said let’s do what you’ve always done- don’t take on second day.
When I started my trial I was on 40 mg of Dex. I started having vision issues and they dropped it to 20 mg. I did not have an uptick in energy and or a crash. I have had fatigue the whole time frame.
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?
He is 79 and his physical deterioration is staggering. skiing last Feb and now needs walker. Being treated w/ dratumumab, cytoxan, velcade and dexamethasone. 2 Kyphoplasty procedures.