Hi all, I was diagnosed with CLL about 4 1/2 years ago, have been on W&W since then. Just after Christmas, I had an ache in my right side below my ribs that did not go away for several day. Went to the ER, and was told my liver appeared to be enlarged and/or have fatty liver. I am diabetic, and this is common with diabetes, so cleaned up my diet, and it seemed to go away. They did CT scans and saw a fair number of enlarged lymph nodes, and my white count was elevated (45,000, which it has been in that neighborhood for some time.
I saw my Hematologist recently, and she expressed concern that I am showing up with anemia for the first time. White count remains at ~45,000. She thinks the liver issue is not fatty liver at all, but is enlarged because my body is depositing white cells there. She also felt pretty enlarged nodes under my chin, smaller nodes in axillary and scapular regions, as well as numerous enlarged nodes in the retroperitoneal space (shown on CT). She thinks I am probably going to need to begin treatment soon. She recommended a 2nd opinion, and I am scheduled at Moffit in Tampa two weeks from now. I'm a little freaked out at the prospect of starting treatment, as I was not expecting this at all.
I have begun to experience a lot of joint pain in my wrists, shoulders, and ankles. Also significant gum sensitivity, despite my dental hygiene being very good. The sensitivity is such that I can now only use the water pik on the 'child' setting. I didn't think to mention either of these to my hematologist, but am reading that both of these can be CLL-related.
Has anyone ever experienced the rapid onset of joint pain or gum sensitivity as a symptom of CLL progression? Again, I have not begun treatment. Thanks all.