Anyone have chronic lymphocytic leukemia (CLL)?

Adderall but it wears off !

Hi @sharina65 Welcome to Mayo Clinic Connect. I see you popped into the conversation about CLL (chronic lymphocytic leukemia) and I’m wondering if you are replying to @stesco with their question, “ Has anyone been prescribed Ritalin for fatigue?”? You mentioned Adderall for fatigue but that it wears off.
Were you diagnosed with CLL and have experience using Adderall for fatigue associated with this form of leukemia? If so, how long ago were you diagnosed? Are you under any form of treatment besides Adderall for your CLL?

@1retiredcboperator, how did the seconf opinion go? What did you find out?

@colleenyoung
The second opinion went very good. The 2nd opinion Dr. noticed a blood abnormality on my labs back in 2016 on my prostate pre op. Obviously she looked at the records before my office visit.

@colleenyoung

The second opinion went very good. The 2nd opinion Dr. noticed a blood abnormality on my labs back in 2016 on my prostate pre op. Obviously she looked at the records before my office visit. Additionally due to a much shorter drive I will be saving drive time on Minnesota winter roads.

@1retiredcboperator I am so glad that you got a second opinion! It is great when we find a doctor that actually studies our charts. Keeper.

@dorothea58
The second opinion Dr. Is much closer and will be an easier drive on Minnesota winter roads.

@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 ?

@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.

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?