After completing two cycles of BR in 2019, I remained in remission until 2023. However, starting in 2024, my Leucocyte and Lymphocyte counts began to show a noticeable increase. Based on these trends, my oncologist had proposed starting V+R as the second line of treatment at a later stage.
Recently, I have been experiencing significant fatigue, exhaustion, and body aches, which have intensified my concerns about the changes in my recent blood results. Notably, my Hb level has dropped to 9.7, my Leucocyte count has risen to 139,000, and my Lymphocyte percentage is now at 93.2.
Given these developments, please share your experience and advise whether it would be prudent to initiate treatment earlier than originally planned.
Many thanks.
Written by
attarintiki
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I would start treatment. Once my hemoglobin dropped under 10, it went down fast. I was a bit stubborn, when my hemoglobin dropped under 10, I thought I could hold out till I saw my doctor at my previous scheduled appointment. In less than 7 weeks my hg dropped to 6 and required a blood transfusion immediately. Started treatment that week.
Attarintiki, I agree with Alex830 . Your low haemoglobin count of under 100 is a trigger for starting treatment.
There isn't a lymphocyte count trigger for commencing treatment (it's when it doubles in under 6 months when it's over 30 that specialists look for other confirming evidence to start treatment), nor is the lymphocyte percentage relevant. In fact, you should totally ignore that percentage, because percentages are misleading when you have CLL, because of how the high (or low when in treatment) lymphocyte counts impact other percentages. (Percentages have to sum to 100.)
What's important is how many neutrophils you have to protect you from infection - your absolute neutrophil count. If your white blood cell differential results don't list absolute counts, just percentages, then your absolute neutrophil count is your WBC x your % neutrophils. That's the only time you should use them. See this post, which shows how percentages can be dangerously misleading healthunlocked.com/cllsuppo...
Agree with everyone else. Once my Hb dropped to 98, I really started to struggle with fatigue, later on reoccurring infections etc. My consultant wanted to wait and I listened. Managed to go for another 6 months or so but they were actually the worst months of my life. Just like Alex830 said, it was going downhill and I required 2 blood transfusions once I started treatment. It might have been avoided if I hadn't waited that long. Good luck.
I came out of remission through 2023 and January 24 started on V &R. No real issues and can’t thank those that developed the medication enough. My rogue white cells increased so much they had pushed out the good reds so was tired and out of breath.
It is impossible to advise you when to start treatment. Don't start treatment too soon as time in between treatments will get shorter and shorter. Don't start treatment to late as it can be a long long road back. Your doctor should be taking your blood test results using standard guidelines for treatment but also considering your general overall health for any miniating circumstances. Blessings going forward.
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