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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 3 hours ago | Replies (366)Comment receiving replies
@suzjlance
Fatigue goes hand and hand with CLL. At times I feel good if I can get dressed and make it to my recliner! Other days I am in the Garden for 10 minutes!
Weight Loss can also be symptomatic of CLL!
Are you having any other symptoms like lymph nodes swelling in neck, arms or else ware?
Treatment usually does not come around till you are symptomatic with multiple areas of involvement like swelling lymph nodes, Night sweats, poor blood work. These in combination usually result in beginning of treatment!
You need a good relationship with a Hematologist/Oncologist to follow and partner with!
There are only a handful of CLL only specialists in the world who only specialize in CLL!
But a good Hematologist/Oncologist will be able to help you on this journey!
I was diagnosed in Oct 2020 at 64 I’m now 70. Everyone of us is unique and different because of the genetics so it’s not a cookie cutter and treatment is individual in nature and based upon the Fish and Flow Cytometry results!
My results and prognosis is quite poor however many people don’t require treatment at all or for a very long time! Most fall into the latter group!
Best wish’s
Cliff
Replies to "@suzjlance Fatigue goes hand and hand with CLL. At times I feel good if I can..."
@hissteps4u Good advice—EXCEPT there’s way more than a few CLL experts in the world. Numerous cancer centers have a staff of experts who do nothing but research and treat CLL (personally I go to Mayo Clinic). There’s a list of experts on the CLL Society website.
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@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4 years and diagnosed with CLL and LPL a few months ago. My first oncologist was not good so my primary doctor referred me to another one. He is much better and listens to me and educates me. I have lost 10 or more pounds and have fatigue but my lymph nodes don’t seem swollen. The back of my right knee is and I have blood clots. I’m going in for a venous ultrasound next week. No sweats. It’s hard but I walk almost every day and do yoga stretches. It helps a lot. They determined I have this from blood work and a bone biopsy.