prognosis for 11q deletion and unmutated stage 2 cll

[tammi71]

I was diagnosed with Stage 2 cll with 11q deletion, not mutated and the CD38 marker on November 30,2015. I am 44 years old and have Type 1 diabetes. Does anyone have a similar diagnosis? Does anyone know what type of prognosis there is? I am in the Watch and Wait treatment for now. Is this a standard treatment option for being in Stage 2?

[Justasheet1]

Tammi71,

I'm sorry to welcome you to the club no one wants a membership to.

It's impossible to answer your question as everyone is different. With your markers, you could perhaps need some treatment in 1.5-2 years is what I was told. I have your markers. They were spot on with me. It could be many more years for you.

What treatment that is, is forever changing for the better. 🙏🏻😃🎉

Ask questions and learn. Set up a team of experts. Control what you can. Don't forget to enjoy yourself. W&W is worrisome but also usually full of good health. Don't waste it worrying about tomorrow. Nobody guaranteed us tomorrow before we were all diagnosed. I'm just sayin.

Jeff

[nvp815]

Hi Tammi,

Sorry to hear of your diagnosis, but so happy that you found this wonderful group. You will find this site to be a great source of information as well as support from such lovely people. I was diagnosed two years ago in November and check in here regularly to read everyone's personal news as well as to learn the latest in research findings. Honestly, I don't know what I would have done without all the wonderful friends I have come to know and respect here.

I am also 11q deleted, unmutated, but CD38 and Zap 70 negative. I went to see my CLL specialist last week and two years out there is no talk of treatment for me. I suggest you take your time absorbing your new diagnosis and learn as much as you can at your own speed. Try not to overwhelm yourself, as it may be a very long time until treatment is needed. My doctor told me last week not to get too fixated on the 11q deletion, as so many of the new medications that are now available or are soon to be available work well regardless of your prognostic markers.

Wishing you a very warm welcome and enjoy the holiday season rejoicing in the fact that the future looks very bright in the CLL world.

Nan