Love to chat with someone who has gone through this . The transplant would be tandem?! 2 within 3-6 months?!? Seems like a lot and mind you husband is still working full time through all thisšµāš«
Hi Laura. I had a stem cell transplant back in January of 2017. I have high-risk myeloma. The first year was rough, but I am doing well now. I'm still on Pomalyst and Darzalex faspro as maintenance. I have been on this treatment for 8 years. You might want to get a second opinion from another myeloma specialist. Just to give you both peace of mind. Also the Healthtree Foundation website has learning modules that tell all about myeloma. I find it very helpful. The founder of Healthtree, Jenny Alstrom had tandem trabsplants many years ago. She is now 4 years out from CAR-T therapy.
Hi Laura. I would go with what the specialist is recommending. I would question the second transplant since they are rarely done now.
Please read the Dana-Farber Press Release from Dec 2023 - Link Below.
From another Post I've made:
Details are at my @A MyMyelomaTeam Member Story.
Depending on your circumstances a Stem Cell Transplant (SCT) may be a bad choice.
If youāve had Treatment something like DarzFasPro plus additional MM Meds and had a - Very Good to Complete Response -, Dana-Farberās Dec 2023 Press Release Now Says Keep the SCT, In Reserve as Your Last Resort.
Dana-Farber is saying this due to them Acknowledging that the SCT causes Too Many Serious Side Effects such as Secondary Cancers and Damage to the Bone Marrow Microbiome from the Procedure.
Iāve Posted Links to their Press Release and Plenty of Articles and Details About This.
In 2021. I was Stage 2, had a fractured L4 (fixed by a Kyphoplasty), I had a t4;14 high risk, 5915 IgA Kappa and a 5.2 MSpike.
I did not collect my Stem Cells, did not have a SCT. Iām Completely Cancer Free and Iām on Absolutely No MM Meds. My Onc says my Labs are now of a person thatās Never Had MM and he expects Iāll Never Be Bothered by It Again - Iām 71 and my Labs are their best in 40+ years - all of this is detailed at my Story.
Other Info:
Dr Berenson of Hollywood CA, has an excellent success rate with his MM patients. He's Not Done a SCT since 2000. https://berensoncancercenter.com/
SCT (Transplants) are a $3 Billion a Year Industry in the US and $6 Billion Worldwide - they don't want to give up on producing this income but it's the People who don't need them (- Very Good to Complete Response - from Induction) who suffer.
https://www.dana-farber.org/newsroom/news-relea...
This is all a second opinion from a MMSpecialist in Chicago .
Be very careful with Velcade. It's a much older MM Meds, long before DarzFasPro - in it's day, it was a Break Through MM Med. It's problem is it can quickly cause severe and permanent neuropathy. In my case, due to my t4;14 high risk factor, they pushed Velcade, for 3 months of Induction (twice weekly) and 2 of my 4 months of Maintenance. I continue with permanent neuropathy that causes stinging and burning in my feet and hands, now almost 4 years later. Every nerve Med they tried were of no help. I'm handling it well with daily Tylenol but it's a constant annoyance that Never had to Be.
All the Best with your Specialist. 8200 is a significant starting point but I've seen DarzFasPro provide people with almost instant recovery, in 8 weeks or less. That said, I have no experience with others with IgM.