Hi guys
I have relapsed again and I will need to start treatment soon! My second lot of treatment of Rituximab and Bendamustine finished September 2023.
I'm alittle sadden that I have relapsed so soon I guess I was hoping for longer before I would be back to treatment again.
This time my consultant has been talking about BTK inhibitors! I know there are a few and I'm not sure which one I will try.
My question is has anyone had any experience with this type of treatment as I believe I could end up taking them indefinitely which I'm finding hard to take in! The side affects are not so great again and having no immune system is a very scary thing to comprehend!
Any advice on your experiences would really help
Kind regards
Debbie x
Hi again Debbie Roxyrock and sorry to hear that you have relapsed again….
I can relate to navigating multiple relapses as I relapsed multiply times over my first 14 years with my first type of rare T-Cell NHL….. it was only when my second very rare type of aggressive T-Cell appeared that the aggressive treatment for both T-Cells between Oct 2013 to Oct 2015 put a stop to my relapses.
My immune system was severely compromised for 4 years from Oct 2013 with the following 7 years up until now having a reduced immune system but I learned to live with this and I have been living a normal active life.
I have not had this type of treatment but let’s see if any group members have had this type of treatments.
I also volunteer with Lymphoma Action the UKs main Lymphoma charity and I have talked with a good number of folks in their various Support Platforms with the exact same type of NHL having navigated the same journey you are on…… if you are in the UK you may want to check this out.
