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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (141)Comment receiving replies
I was diagnosed with cll in Feb of this year. I thought I was going through menopause lol little did I know what was ahead. When I looked at the blood work, I went back as far as Jan 2023 and my lymphocytes had been high at that time. Gradually going higher and higher, I also had a chronic UTI. Finally in Feb of this year something clicked with my primary care provider. Remember, I and she thought it was menopause. So I was being treated for that which had my hormones all out of wack. When she said you have a UTI, I said. What’s new, I always have one. That’s when she started digging deeper into what was going on with me. Yes I had a uti and the antibiotics that was given to me before wasn’t working because I had ecoli in my bladder. She gave me stronger meds and referred me to the oncologist. I’m a stage 1 with cll/sll, lymph nodes are enlarged as are the lymph nodes around my liver and spleen. I have every symptom except weight loss. Lol. I need that! Haha. I have to find the funny in this disease. Lately I have had joint pan with swelling in my ankles mostly the right one and my hands hurt so bad. Tonight I noticed a bump and swelling on my thumb. Sometimes I just want to cry. I’m 53 and this sucks.
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Hi @lori413 Reaching through the computer to give you a hug…and let you know it’s ok to cry. It’s a great release for pent up anxiety and that crazy fear of the unknown that leaves us rattled sometimes. So purge with the tears and then forge onward! ☺️ I agree though, laughter is the best medicine. Keeping a sense of humor (sometimes inappropriately so, LOL) through these life adventures has been my saving grace.
Fortunately CLL, according to many sources of credible data, remains one of the more treatable forms of leukemia with patients often living full and productive lives with the disease. And it’s generally very slow to develop so treatment may be delayed for years. I know that doesn’t stop the underlying thoughts of having a chronic condition or the occasional side effects that surface, but it should offer some level of encouragement that this is something you can live and try to put in the background of your thoughts.
I have a young neighbor (early 40s now) who was diagnosed 10+ years ago. He and his wife have several young children. He’s out daily playing football, jogging, mowing lawn, working… Nothing seems to slow him down. His case was diagnosed at stage 2 so he was placed on targeted therapy right way. He’s doing fabulously well with no advancement of the disease. I know everyone’s journey is different but I remember how terrified the family was initially of ‘having cancer’ and worried about treatments. Now it’s just routine daily life…
So I hope you’ll be able to take all these new little symptoms that pop up here and there with a grain of salt and a dose of quick tears. It’s pretty normal to have a surge of anxiety when we get a new ache or pain. When that happens I try to dismiss it and most of the time whatever it was has disappeared within 24 hours! Like what the heck was that?? LOL. Anyway, you’ve found a great group of new friends here in Connect, so Welcome!
Does your doctor feel the ankle and hand pain are related to your diagnosis?