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I am on the ABECMA drug
I was diagnosed in Oct 2020 with IGG/Kappa myeloma after a total collapse of my T5 vertebrae and spinal cord compression leaving me unable to stand and walk for a couple of months. I am on my 4th line of treatment (including Stem Cell Transplant june 2021) and I am currently preparing for T cell collection on May 10.
Thankfully I am able to walk on my own now! My myeloma is very aggressive and I have not had a break In treatment since my diagnosis except for 3 months when I was battling PAH… read more
My husband is awaiting his CARt cells as we speak...he is scheduled to go into hospital 5 /16...so far the collection and testing has gone well...praying this therapy will give him success...he had… read more
Is anyone else disillusioned about the qualifying factors leading to getting ABECMA therapy? My oncologist recommends that I get the therapy. He contacted the top doctor at Siteman Cancer ctr here in st louis, missouri. He was sent all my records and it was determined that my multiple myeloma is being at a stalemate (kept from getting worse or better) by infusions of Impliciti and pomylidimide(25 days/30). So I'm doing good according to this other doctor. I have to get much worse before I'm… read more
So true
Greetings from Alaska i did not get a complete response and I’m on treatment but I’m doing very well and I am grateful.
I have been in remission over a year and have been taking monthly infusions of Darzelex but recently I ran across an article describing the side effects of Darzelex and I have many of them. I have decided to stop Darzelex in order to build my immune system.
I was going to get it next week; waiting two weeks after the newest vaccine for COVID. I'm going to wait longer..... I want to see how others fare with it.
After my complaining that I was not eligible ( because I am in remission?), and now I want to wait anyway. Anyway, we'll see.
My GP said I was not eligible, but my Oncologist encourages it. I had a phone consultation with my Oncologist last week and I asked if he would approve my waiting . He said it's up to me.
I had Evusheld last June, but it is no longer recommended.
I’m
Going to get fusion for my low antibodies. Is this common for myeloma patients. I can’t fight off infections.
Hello Becca21
For me it’s not a shot it’s an infusion last about 3-5 hrs it’s called an IVIG to help your immune system
I also receive another infusion for Bone Strength it’s every 6 months. I go… read more
Posted this morning a new update
Steve is 69 years old, & a 14 year MM survivor , & just completed his second autologous stem cell transplant 4.5 months ago.
Stephen we sure have beaten the odds and I am at 21 years post diagnosis. Stephen good luck with your Car-T treatment and hopefully not too many side effects.
There is a new study that I am potentially eligible for involving cart T cells. I am newly diagnosed have not started treatment, at a high risk for leukemia so need to delay any stem cell transfusions for as long as possible. The study is looking for people in my category to see if doing the standard 4 rounds of rvd, stem cell harvesting then cat T cell therapy will give results similar or better then the current car T cell therapy after 4 relapses
Does anyone have any experience with cat T… read more
Thank you