Hi,
Congratulations on the 14 years!

I’m confused about CAR T being pushed so quickly.

I did ASCT in February 2021 it failed. Have had Ninlaro, Dexamethazone and Revlimid May 2021 and it lasted until August 1922. August 1922 I started taking Darzalex fas pro Carfilzomib and Dex. This line of treatment only lasted seven months. Honestly I think that we should try another round of it but my doctor isn’t going to.

On a telehealth appointment last week, she was pushing Car T on me with Blenrep. Upon my own investigations, I found that the Blenrep was pulled off the market in November 2022. It is back on the market now, but it is only for compassionate care use. And it is still in a clinical study. I didn’t even get to ask a question if this doesn’t work what’s next.

When I did my original stem cell collection we were able to achieve 15 million T cells. Only needed 5 million for my transplant.

My oncologist informed me that we would not be able to use the T cells that I donated to mysekf. Would have to go through all of those Neupogen shots again have the pheresis done which would mean putting in the tunneled catheter into my neck I’m just not up for it I don’t have the help and my family lives far away.

Seriously write all of your questions down and email them perhaps to your oncologist for your friend. For myself, I think that there needs to be more concrete studies and time to pass before I would do the Car T.

Best to you and your partner

Susan

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.

Hi Susan, This is Stephen- Patty’s my significant other and extraordinary caregiver!
I’m in my seventeenth year with MM which has included many therapies that have worked for a period of time, and then became ineffective or less effective. My first AST was successful(in 2008) and provide me with four years of drug free time. I am now 16 weeks out from my second AST which has brought my numbers into remission territory. But my Dr anticipates me slipping back ward and has lined me up for CAR-T which is scheduled for next week in Madison, WI.
I’ve had Balantamab which didn’t work and caused serious platelet issues as well as hazy vision for a while.
I’m not emotionally ready for CAR-T and it’s risks, but at this moment we’re going ahead with it- with trepidation.
I’d rather wait another month but tomorrow’s lbs will show whether or not I have the option of waiting.
I had cafilzomib, which caused a heart failure picture, but it worked for a while.
I think revlimid with dex was the best combination ever, and it still works.
My cells have been treated.with Abecma (Bristol) so we’re ready- at least chemically.
That’s that basic story. My two auto transplants have worked. But I’m not sure this one will. We’ll, I guess.
Good luck to you in your journey.
We’ve survived much longer than predicted at diagnosis, for sure.

Hi Susan,
We are packing for our trip ! Thanks for your response. Steve has done several different chemo therapies which have not put him in remission, thus doctor worried lab values might start changing quickly ? I will see if Steve will share, time permitting . ( he can explain his history the best, of course ) we would prefer to wait a bit, however doctor feels timing is best now, while blood values are looking good ! We do worry re side effects from doing the car-T therapy………. take care ! 🙏🙏🙏💪❤️

I can't tell you. I have had MM for 10 years in April. It's great that it's autologous no rejection. Prayers for you, Please if possible keep us up-to-date if you are able.