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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (372)Comment receiving replies
@loribmt hello. I am a CLL patient monitored quarterly since 2023. I started Calquence mid 2026 my body tolerated the Calquence for 33 days starting unbearable burning pain in fret valves and hands forcing stopping the Calquence. 2 weeks later I started Zanubrutinib and 3 days of Zanubrutinib the unbearable burning pain in calves feet & hands I stopped the Zanubrutinib. This week the doctor recommended infusion and pill therapy and I’m skeptical of therapies because the immediate debilitating painful reaction my body had to the first 2 therapies. Should I get a second opinion from another doctor.
Replies to "@loribmt hello. I am a CLL patient monitored quarterly since 2023. I started Calquence mid 2026..."
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Hi @mulle I read both of your replies to see you are very early in your CLL journey. Since this is generally a slowly developing form of leukemia you have time to explore your options. It’s never a bad idea to get a 2nd opinion and finding a hematologist oncologist who specializes in CLL would be a plus. Just getting the 2nd opinion doesn’t commit you to changing doctors but it might give you peace of mind.
Though your current doctor is using recognized treatments for CLL. I’m sorry you had such a nasty reaction to the first two treatments. Makes a person a little gun-shy to try anything else. But there are other types of treatments. The two you tried are similar in their composition so perhaps something else won’t have that same side effect.
Do you have the opportunity to see another doctor or clinic?