Connect
← Return to Anyone have chronic lymphocytic leukemia (CLL)?
Discussion
Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 30 minutes ago | Replies (303)Comment receiving replies
@tomatack
Thanks for that information. Were you at the stage where you needed the treatment? My doctor hasn't actually mentioned "stages" to me. She just says that when my lymphocyte numbers double within "x" months (forgot how many), it's time to look at treatment. She mentioned treating with Rituximab, but said again that there's no way of knowing if the fatigue is from CLL or not, but the fact that it keeps getting worse suggests it. In fact, like other people here have been told by their doctors, she has indicated that the fatigue is probably not from the CLL and there's no indication for treatment yet. I beg to differ. When you are always feeling like you have run a marathon and can barely make it from the store to your car, I for one will try anything because the quality of life I am experiencing is just not okay (I'm 72). Had you been experiencing a lot of fatigue, and have you noticed a difference since starting the regimen? Or, I imagine it might be the case that it is too soon to tell?
Replies to "@tomatack Thanks for that information. Were you at the stage where you needed the treatment? My..."
@loriskt I was diagnosed 5 years ago. My numbers have steadily climbed and then will stall for a while. I am so exhausted it is unbelievable to me. I find it so frustrating that doctors continue to say it is not from CLL. A few years down the road I think that research will show that is not correct.
Connect
@loriskt. Staging of CLL/SLL is interesting, but doesn't really drive treatment. It's not like most cancers. I was diagnosed at Stage 1 and started treatment at Stage 1 for "progressive Lymphadenopathy ". In other words rapidly growing lymph nodes which were evidence of accelerated disease. My disease is almost exclusively in my nodes as my blood ALC has been normal since diagnosis. In fact my ALC was 1.77 when I started treatment. Your comment that you doctor mentioned Rituximab tells me they are not a true CLL specialist. Rituximab is a anti-cd20 antibody that has been proven inferior to Obinituzimab which is now far more widely used by specialists. There are also multiple targeted drugs that are very effective. I'm currently enrolled in a Mayo clinical trial which is working beautifully.
My personal recommendation is that all CLL/SLL patients should consult a true specialist and go to a major academic cancer center (Mayo, MD Anderson, MSK, Dana Farber, City of Hope, OSU, Weill Cornell, Fred Hutch, etc). I see my specialist every 90 days and travel from Atlanta to Rochester, MN to see her. I also have a local Hematologist, but he is more of an emergency backup. He readily admits CLL is not his specialty.
If you go to the CLL Society website and look under resources you'll find a link of CLL doctors. If yours isn't on the list they aren't an expert and you deserve an expert. My 1st Oncologist wasn't an expert and everything he said was wrong. A bit scary when you think of it.