It's really nice to have found this group. I was diagnosed with CLL about 2 years ago and am still on watch and wait. And I still have a lot to learn about living with and managing CLL. I will be seeing a new hematologist/oncologist in a couple of weeks as I have been needing to find a specialist near me for several months now. While I have not had too many problems so far, I have lately noticed more nodes in my neck area, more fatigue, and somewhat unexplained feelings of discomfort and fullness in my abdomen, and what often feels like excessive sweating. I'm 54 and can tell the difference between the overheating/sweating and a hot flash. This is not just a hot flashes... Anyway, I look forward to connecting and reading many of your posts. Glad to be here!
Moonmyst
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Moonmyst
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Welcome Moonmyst. Connecting with a true cll specialist is one of the best moves you can make. If you have one picked out, great. If not, and you give people a general idea of the region you live in, you might get some good suggestions. I am in Louisiana and treat at MD Anderson in Houston, not too long a drive for me.
Hi! Welcome to a group you never wanted to join. I agree 100% with cajunjeff. Shortly following my 2016 CLL/SLL diagnosis, at my first CLL SOCIETY support group meeting, I was 'pointed' in that direction, and that has made all the difference! In 2019, I qualified for clinical trial EA9161 of 18 months fixed duration. After 9 weeks of treatment, I was in clinical remission & continue in remission after 15 cycles.
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