Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec 2020. Since 2014 increased lymphocytes, never followed up.
Still W and W. But spleen is enlarging, fatigue increases, as condition gets a bit less.
I am wondering if there are treatment experiences for atypical CLL ( cd5-, cd 20+) ?
Welcome. I think there are very few users of this forum from the Netherlands. The 2022 guidelines in English (lots of copies of this are behind paywalls) show first line treatments are still primarily CIT (chemotherapy) unless "unfit" or TP53 aberrations. They find little difference in overall survival if properly managed and prefer repeated treatments rather than aiming for duration of PFS. I'm uncertain when this will be updated or what may have changed since this document was published.
researchgate.net/publicatio...
Click on "Download full-text pdf"
Hi, CLL is so diverse I don't think any particular flavor can be pinned down as typical. If you fill up your bio with more info, perhaps you will get more suggestions from people with similar markers, numbers and disease progression.
"Atypical" is a particular subtype of CLL. It lacks CD5 protein on the cell (CD5-), this makes it more difficult to diagnose as CLL.
A number of years ago, my hematologist examination revealed an enlarged spleen and ordered an ultrasound to confirm. It took several weeks for me to get an ultrasound appointment and while awaiting the appointment I did a Google search and found an article that suggested that red bell peppers can help. So during the few weeks before my ultrasound, I made a point to eat at least 1 raw red bell pepper every day and by the time I had the ultrasound, my spleen was normal. I still eat raw red bell peppers from time to time and I have not had a problem with my spleen. I don’t know that it helped any other of my CLL issues, but it did seem to help reduce to normal my enlarged spleen.
thank you for your answers so far.
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