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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 3 hours ago | Replies (268)Comment receiving replies
I was diagnosed a year ago too betty and I am at Stage 0 also. I am 75 and live in Nova Scotia and would like to keep in touch with you because we are similar in our Stage and diagnosis. Do you have enlarged lymph nodes also? I am Stable right now so doing good. No issues except my hair sweats at night. Does yours?
Replies to "@bettycll I was diagnosed a year ago too betty and I am at Stage 0 also...."
@sweetsuzy
I promised you an update after my appointment with my oncologist. I am still stable. In fact, my WBC is down to 13! It is still elevated over 'normal', but lower than my previous lab. I have blood work every three months, and I have learned that, while values tend to go up and down - in general I am stable. My oncologist is continuing (for now) my monthly gamma globulin infusions. I feel very fortunate and hope I continue being stable. So, now I can concentrate on upcoming visits with the cardiologist and nephrologist!
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@sweetsuzy
I am delighted to hear from you, Suzy! As you say, we are similar in our Stage and diagnosis. However, I live in the state of Georgia in the US, so we may not be able to get together for a chat over a cup of coffee!
I do not think I have enlarged lymph nodes. However, I see the oncologist Thursday and will have a better idea of how I am doing! Mostly, my diagnosis is from blood work, not symptoms. Yes, my hair occasionally sweats at night - but nothing that I can't live with. I also sometimes get day sweats where sweat just runs down my face and my back is soaked. This is not often - maybe a couple times a month, but it is disturbing. I mentioned it to my oncologist, but she didn't seem to think it is associated with my CLL and told me to let her know if it happens more frequently. I am Stable (and hope to stay that way). My WBC fluctuates from 14 to 17. I read everything I can find and hope I will be able to manage for the long term without any treatment.
How is your immune system? Due to gum surgery, I had REPEAT sinus infections for 8 months. My PCP noted my elevated WBC and wanted me to see a hematologist. I was CERTAIN the elevated numbers were due to the many infections and thought he was being overly cautious. However, after CLL diagnosis, my oncologist thought the infections were due to the CLL (sort of - is it the chicken or the egg?)! Anyway, she has me on infusions of gamma globulin every 4 weeks to boost my immune system. I don't know how long I will have them; but I have been free of colds, flu, Covid, etc. I have since learned that many CLL patients experience a lowered immune system. I will be in touch after my Thursday appointment if I have any updates. Nice to meet you!