Anyone experienced debilitating fatigue when going off Acalabrutinib?

[unairdefamille]

After going to ER a couple of times because of hypertension, irregular heartbeats, and fast pulse, my oncologist recommended stopping the meds I had been taking for CLL, until he finds a more suitable treatment. Previously I was on Ibrutinib.

[studebaker]

I was on Acalabrutinib and very happy for 8 months when I had two episodes of atrial fibrillation and two cardio versions within about a week of each other. The cardio versions worked only for a very short time and I ended with permanent atrial fibrillation and a heart failure. My fantastic cardiologist is keeping me stable now but, it took some time to get to the cocktail of meds to work well.

Acalabrutinib was stopped and I started Venetoclax/Rituximab 2 year treatment resulting being in remission now.

Are you under care of cardiologist now and having debilitating fatigue not improving?

I hope you will find good treatment with no cardio toxicity for you.

Dana

[unairdefamille in reply to studebaker]

THANK YOU Dana. Do you mind sharing the meds cocktail from your cardiologist? I will have a visit with mine next week.

[studebaker in reply to unairdefamille]

At the moment I am on these Bisoprolol, Xarelto, Furosemide, Spironolactone, Digoxin

I go to Heart Function Clinic every 3-4 months and sometimes the dosage and pills are added or changed.

The best of luck 🤞🏻

[CoachVera55]

I am on Acalabrutinib 1/2 dose for 3 weeks & I pray that it works with no toxic side effects. I will graduate to full dose 2 weeks before my next appt with a new older more experienced Onc. What I noticed was that my Total Cholesterol was increasing despite my weight loss & increased fitness levels. I had only been on HCTZ 25mg & Zocor 10mg (low dose statin) for years. My Columbia & Yale Medical School Cool Cardiologist prescribed Colesevelam 625mg daily 6 giant Horse Pills, 3 pills twice per day or all 6 at once & I do it all at once.

Anyway after 3 weeks TC 210->188, by 7 weeks down to 164 plus the LDL, Non HDL & Triglycerides went down to normal & HDL is up to 85. I don’t remember seeing these numbers except in my 30’s like 25yrs ago.

Acalabrutinib has not improved my CLL #’s

4/17/23 -> Hgb 10.8, Plts 76, WBC 81, Lymph #78, Lymph % 95.9, Alk Phos 249, Lact Dehy 327

5/31/23 -> Hgb 10, Plts 51, WBC 54.7, Lymph #54, Lymph % 98.4, Alk Phos 106, Lact Dehy 227

But my blood seems cleaner so I will wait watch & keep the faith. I am scared to go to full dose by June 5 since I have a June 19 appointment 🙏🏾

New Cholesterol Meds that drop Total Cholesterol from 210->164 in 7 weeks

[unairdefamille]

I hope you soon get some benefits from your Acalabrutinib! Keep the faith 🙏🏼