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Profile picture for mrgreentea @mrgreentea

Hi @nancybev

My kids were also concerned until I got us all up to speed. There is a ton of information to learn, but fortunately so many great & reliable resources available.

I was dx'd May'24 @ 64. I went on drugs (Zanubrutinib) immediately. Both Mayo and UMN Med Center did biopsies, FISH, along with too many other tests to keep track of. As you have learned, or will hopefully soon learn, for most people it's something to live with... though unfortunately some people are impacted to a much greater degree.

There is a lot of support right here & out there for CLL and its variants. Staying healthy is a great idea, so kudoos for that! Happy to answer any questions if you have them.

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Replies to "Hi @nancybev My kids were also concerned until I got us all up to speed. There..."

Thank you! I've been reading research papers, articles, etc. for about a week straight now, and with everything I read I just get more confused, for the most part. I think I know my labwork results by heart now...

@minnesotajim 's response about the bone marrow biopsy really has me wondering why my doctor (a) insisted that I have CLL Stage 0 and not low-count MBL, although pretty much everything I've read says that it's MBL, and that there is no need to do a bone marrow biopsy. She was warning me about things like having to go to a hospital if I get Covid, etc.

Her first assumption, before the test results, was that I had MDS, probably caused by too much alcohol (I drink more than I should, but not THAT much!). But, since apparently MBL is NOT caused by alcohol, maybe it threw her off.

I also have Celiac, which complicates things even more (I'm usually very careful about being GF).

I'm not really worried, but just getting tired of not really knowing what's going on, and doing so much reading on my own!

Thanks again for your reply. 🙂

By the way, why did you start meds right away? That's unusual too, isn't it?

I take Brukinsa too. What side effects do you have, and how do you manage them? I bruise extremely easily, have dry skin, nails and eyes.
Also petechiae on my leg. I am lucky to not have any fatigue.