The upside is I don’t have RT, but I did pick up some more high risk markers in addition to : 11q and unmutated. I learned in July the results of the DNA sequencing study. I picked up TP53, Notch1, ATM and few other ones that predispose me to head and neck cancer and cognitive decline. They did not find 17p del, thank God! 3 out of 4 high risk markers is more than enough to deal with. I was told I picked up these mutations because I was on Venetoclax. Honestly, I have not read about that, just the mutation that makes you resistant to Ven. Are any that I listed that specific mutation? My doc insists Ibrutinib, but we came to a compromise on Acalabrutinib after I found out I have a minor leaky mitral valve. Lucky me! But I m concerned with these mutations about developing a secondary cancer from the BTK inhibitor. Venetoclax is safer with regards to developing secondary malignancies, but my doc says absolutely not! So, My question is for the physicians and scientists in this group, does Ven cause these mutations or is this the result of an 11year CLL journey that started with unmutated ighv and just progressed over the normal course of time with this disease? I was treated with chemo B&R twice and I think the mutations were from the chemo, but It’s just an assumption. I will be starting Acalabrutinib in a few weeks, trying to put it off as long as possible. Lymph nodes have increased significantly along with fatigue and my counts are higher than anytime since I was diagnosed. Now I’m starting to wonder, if I fail Acalabrutinib also where do I go from here? Chemo is definitely out of the question and so is Gavyza (sp?) because of some other marker I can’t remember. And could Richter's still be lurking out there?
If anyone has some insights to share, it is much appreciated!
Trying to stay positive, but feel like I KO’d by Muhammad Ali.