Hi, I am 67 and was diagnosed with precursor B cell ALL in May this year. I have had three induction phases (2 on UKALL60 and 1 on UKALL14) and my blasts have remained at 70% plus throughout. Now I've been diagnosed as primary refractory and have been referred for Car-T cell therapy. Does anyone have any experience of being refractory or of Car-T cell therapy? I'm trying to remain positive but sometimes it's really hard as I'd expected to be in remission by now.
Hi JoyLA and welcome to this corner of the Community although I am sorry to hear about your diagnosis and how things have developed.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Acute Lymphoblastic Leukaemia (ALL) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.
I actually have had 2 Allo (donor) Stem Cell Transplants (SCT) the last was 8 years back (even if CAR-T was available back then it would not be suitable for my type of NHL)
I am not sure if any group members have had CAR-T but there are a few who have had SCT.
Having talked with many people who have had CAR-T for lymphoma the process is much less demanding than having SCT….. there have been a few folks who have been through CAR-T have posted this in our dedicated Stem Cell Transplant support group so do have a look through the old threads.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘ALL Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Hi again JoyLA so good to hear that you are out the other end of your CAR-T and are in the road to recovery.
CAR-T is definitely a less demanding princess then Stem Cell Transplant and it’s great that it’s now available for ALL.
