Good day all, I was Dx in January after routine blood tests just most here I suspect. It was like a freight train had hit me and all I could do was wallow in my own misery. I'm still struggling but the more informed I become the more hopeful I am. I'm 49 and pretty healthy, I eat right and workout regularly, 3 kids at home here in Oregon...9,12 & 14. My oncologist didn't really tell me what flavor of CLL I had so after reading up on everything, I learned about all the different chromosome deletions and mutations, turns out I have high risk CLL...Hurray! I'm 11q deleted, unmutated, trisomy 12 ( whatever that is ) not sure yet but I also think I am a complex karyotype, not sue what that is yet either but will find out tomorrow. I have swollen lymph nodes throughout my body, nothing too significant, although a couple in my neck that show a little bit, prolly more to me than anyone else. I am seeing a specialist here in Oregon, Dr. Sharman.... he's one of the best from what I read, very smart guy, in fact I see him tomorrow for a check up. I'm still on W & W with WBC at 16k ALC 9.3 all the rest are normal, so I feel like I have some time....maybe. the 11q - unmutated scares me, but what r you gonna do, right. it could be worse I could be 17p del. Nonetheless, it seems the newer drugs may overcome 11q and/or 17p, I hope. I see some on Ibrutinib for years doing fine but not sure if they're 11q deleted or not, anyone out there 11q del on Ibrutinib...? how's it going ? I've read some really good things about the new drug ACP - 196 and ventoclax but they seem to be for 17 p del patients only, other than some trials for treatment naïve patients like me. Anyway just wanted to say hello and get some feedback on 11q and unmutated CCLer's. As time goes by I do find I am not crying in my beer as much I was, but it's still the first thought in my head when I wake and the last thought before I go to sleep....sad I know but I'm learning to live with this new monkey on my back at all times, slowly but surely. Haaving a great family helps! thank you for listening to me ramble on.
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