CAR T-Cell Immunotherapy Information Needed

Harmon said:

CAR-T therapy notes

Answering too late for your case, but will comment in case it helps others. I received CAR-T about 18 months ago. It put me in remission after much chemo failed. It has been fantastic. But, (and remember, I am no doctor) I would think you would want to keep this potent weapon in your arsenal until after relapse, even if it was available while you are in remission. Why? It is like a cannon you don't want to fire until the enemy is crossing the moat. It may be preventative, but at unknown cost. CAR-T is risky and has side effects and AFTER effects. It  kills ALL B-cells in your body, good and bad. You are left without a normal immune system. Recovery of my mind took months (google cytokine storm). My body is still recovering and my Ig levels that protect me from all those common diseases have not returned yet. Don't get me wrong. It is well worth it. But, if it works for you, it will work after your cancer cells have returned. It will target them like an assasin. Until then, I'm not sure it was developed as a preventative as much as to be a direct weapon. It is like releasing the Kraken.

Thanks, Harmon

Harmon,

I didn't think anyone has seen/read my old post again!  Also, I didn't get any notification that someone responded?  Hmmm?

Glad to hear you had CAR-T a year and a half ago and you are in remission!  May you continue to be that way for a long, long time, or get declared cured!

The oncologist that was involved with my tranplant finally told me that CAR T isn't usually given during remission.  I also got word from the manufacturer, too.  I agree with you. As my father likes to say "If it aint broke, why mess with it?!!"  Something like that.

I was very concerned about them fighting for me to get it (insurance denied it unless there is evidence of disease) and was somewhat relieved when they said they couldn't do it.  Perhaps, a clinical trial may be out there and I can, but I don't know?  I wish there was more information out there.

And yes, I understand the treatment has it's disadvantages/side effects.  I could have died during the treatment and there is no way of knowing how long it would keep working.  Like you said, it may not be used as a preventative measure. 

Anyway, I am enjoying life being in remission yet!  I had my transplant in Jan. 2018, radiation ended in Nov. 2018.  So it's been 1 year, 2 mos in remission since my last relapse. 

I'm trying to take one day at a time (have my times of worry/depression) and am trying to enjoy life in the moment.  I just came back from my first cruise!  It was great!

Can you please share your story?  What kind of Lymphoma did you have, previous treatments before the CAR T and how the CAR T was, and of course, your present condition?  I wish you well & hope to hear from you soon.

Happy New Year!  2020 seems to have a nice ring to it!

Thanks for posting,

Debbie