11q deletion, my experience and short story

[steve5441]

I just finished reading a post concerning an 11q deletion being mutated or not. I have the 11q deletion, and have had it since first diagnosed in 2009 at age 60. 11q was not a big deal back then, as not as much was known about it 10 years ago. 17p was always the bad marker, and I always dreaded that one. Six months after my diagnosis I needed treatment, blood counts had dropped to very low levels. FCR was the gold standard at the time, 3 infusions a week every month for six months. Lots of time in the chair, never missed a drop either. Got 5+ years of remission, relapse in 2015, imbruvica for exactly 3 years then 2nd relapse. Now I am on venclaxta, 9 months so far, about 8 months on full 400 mg dose. I have NEVER had a swollen node, organ, gland the entire time with this disease. My CLL LOVES my bone marrow, and that's the only place it's ever been. I read a reply to a post by one of the administrators on this topic. 11q never seems to get the attention as some of the other markers. I asked my Dr. about this and he just says CLL can be different in every person. Why does mine love my marrow? Having it clogging up the marrow can make it a little more difficult flush out with treatment. I don't like to get to worked up with all of the deletions, mutations, indicators etc.; you can put a bunch of extra stress on yourself if you try to over think this. Having co morbid conditions also plays a big part in the outcome of any disease, the more you can take of your treatment, the better off you will be. Think of this, when I was diagnosed there was no imbruvica, venclaxta, car-t, all of the new trials, there have been another handful of drugs come out just since I went on the imbruvica in 2015. This stuff even works on 17p, which has the worst reputation. In 10 years I have seen so many advancements with this disease, and if I live long enough, I might get to see a cure. Please feel free to comment or ? FYI, I attend Abramson Cancer Center at Penn Medicine and have for quite a while. I have had 5 BMB and they all hurt, no sedation, 2 PET scans, CT scan, various chest x-rays and of course many many blood tests over this 10 year period. Good luck to everyone with this " treatable but not curable" disease .

[Justasheet1]

Thanks for your perspective with 11q-.

I too have that marker and am soon to be on my second line treatment. There has been, as you said, much advancement in treatments.

I’m 🙏🏻 for a cure as is everyone on this forum.

Jeff

[DriedSeaweed]

Thanks for sharing 11q story.

Sometimes I can find gems where papers and articles focus on 11q.

Annoyingly most of the time it is only briefly mentioned...

[Newmeds]

Hi Steve, your story intriges me! I myself am on Venetoclax and as I gather you are after Venetoclax now on a new BTK inhibitor through the LOXO 305 trial.

I am wondering how you did on Venetoclax because it seems to me you stopped at some point and fairly soon entered this trial? Looking forward hearing from you! Kind regards from Kees ( The Netherlands)

[Hidden]

Thank you for sharing. New here & needed to read this.