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Anyone have chronic lymphocytic leukemia (CLL)?

Posted by hikerny @hikerny, Apr 1, 2025

Any individuals with a CLL diagnosis?
Cliff

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hissteps4u | @hissteps4u | 1 day ago
In reply to @mulle "@hissteps4u I’ve been CLL positive on & off since 2017 & monitored quarterly since 2023 &..." + (show)
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@hissteps4u
I’ve been CLL positive on & off since 2017 & monitored quarterly since 2023 & had virtually no symptoms. Starting to show border low hemoglobin test results. Doctor insisted I start Zanubrutinib & denied by ins. I started Calquence. 30 days past & numbers started normalizing. 6 Calquence pills taken from prescription 2 making 33 days total and the pains in feet & hands were unbearable painful burning….. can’t eat sleep or normally function. Numbers deteriorated Doctor started Zanubrutinib, 3 days 6 pills same unbearable burning pain in feet hands stopping the medication. 1 month later my blood test numbers are now abnormal and symptoms of enlarged spleen, shortness of breath, hair falling out and weakness are surfacing and I’m told it’s not from the failed prescriptions therapy. Now Doctor want to start infusion and pill therapy and I’m skeptical of future treatment. What do ya think ?

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@mulle
You should listen to
Your Dr’s and make the final
Decision for yourself! No one can force you on treatment! It’s always your decision!

Personally I have a great relationship with my doctor and we make Informed decisions together!

I am on my third wave of treatments it’s never easy and
You must understand

There is No Cure but today’s medications are way better than when I started!

Good luck on your journey

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