Car-T Adventure in Progress

[Bajabarb]

I am now at Day 7 after my t-cells were transfused and have had no CRS nor any neurotoxicity! Could I be one of the lucky ones who never have those side effects; are they yet to come; or worst yet, is the treatment not working? At this point, all I can do is wait and see. Some of my blood values, I think, are responding to the treatment by going in the expected direction but so far, that’s the only evidence of having had the treatment at all. So I feel like a fraud, being in the hospital for 2 weeks feeling perfectly fine. Perhaps that will change. Just wanted to update you all. Thanks for reading and for all your prayers and good wishes!

[Schubert1870]

These are very heartening words to read, and I’m happy for you that treatment is going well for you! Perhaps my fear of potentially having CAR-T will gradually diminish through your posts.

Thank you for all your continued updates. They are very much appreciated.

Schubert

[Bajabarb in reply to Schubert1870]

The fact that you are on Venetoclax monotherapy might leave you open to having Obinutuzumab and Pirtobrutinib next which is what I had until the DLBCL appeared. I don’t know how long people usually do well on that treatment….probably depends partially on their favorable/ unfavorable markers, of which I have many of the latter. For me, although it didn’t work as long as I had hoped, it was very tolerable. In fact, I felt really good while on it and my blood values were excellent….all the more reason I was so shocked at the DLBCL diagnosis. I think they are improving the Car-T treatment all the time with trials and experience so by the time you need it, hopefully it will be perfected! Of course, the real proof is whether it works and for how long. Best wishes to you in your treatment journey!

[Schubert1870 in reply to Bajabarb]

I need to update my profile since having 2 other treatments after Venetoclax. I’m now taking Pirtobrutinib and feeling good though I know it’s pretty short lived.

Best to you and I look forward to your upcoming posts!

[Bajabarb in reply to Schubert1870]

Sure hope it works well for a long time for you! I found it one of the BTKi s that had some of the least side effects.