I will be starting on Calquence in 3 days. What can I expect energy wise?

[Mackiec1108]

Calquence Results

[cajunjeff]

That’s a very difficult question in the abstract without knowing how you currently are doing with Cll.

If you currently have any sort of anemia with low hemoglobin and are having low energy, then I would say you should find a gradual increase in energy as acalabrutinib does its job and helps restore oxygen to your blood.

If you are not having energy problems now, then I doubt acalabrutinib will run you down at all. There are side effects with acalabrutinib, but generally less so than with ibrutinib, and even ibrutinib side effects are mild to moderate for most people.

[Mackiec1108 in reply to cajunjeff]

Thank you for your encouragement with energy. My last treatment was Rituxan without results my oncologist had hoped. This will be my 4th treatment over 9 years. The calquence sounds like a good option if I can get by the side effects of diarrhea.

[sllincolorado in reply to Mackiec1108]

I was on calquence for 2 years. I did not have any gastric issues - actually I basically did not have any side effects. Drink enough water and take an extra bit of caffeine if you get headaches (not an uncommon early side effect). I took the meds near the time I ate - and if you find your stomach is upset switch it up and try it without food (both are options per the pharma company). If possible get some sunshine everyday

Don't forget - your numbers are likely to get worse for the first few months and then they will move in the right directions.

[VidaPlaya]

I know you've started Calquence already from seeing your other posts, but I wanted to share my husband's experience. Everyone will react differently, no doubt. But here's how it was and is for him:

He started Calquence in July 2020 - although his counts were not high, clinically his disease was pretty debilitating with extreme fatique and painful nodes, which he'd lived with for 5+ years. His CLL evolved in 2020 and onc started him on Calquence, starting regular dosage of 1 pill 2x day. The first week or two after starting it his lymph counts did jump up, but the pharm co rep said that was the drug working, pulling the CLL out of the marrow and in to the blood to kill it. We imagined Space Invaders going on.

About hour and a half after taking pill, he'll get body aches and flush of heat. The pharmacist at infusion center has suggested it's a mild allergic reaction, and we've tried antihistamines and Tylenol to reduce the affect, but without much luck. But overall, it's tolerable. Hot flush lasts maybe 30 minutes, but the body aches were difficult.

After a 4 months or so, and after starting Gazyva (I think it was in 3rd cycle), his counts normalized and his energy started rebounding. The onc allowed him to reduce dosage to one pill at night, so he has his hot flash and then goes to bed. He'll still have body aches in the morning, but by 10 am they are gone. (He has underlying arthritis in his spine, so we can never say there is no pain in his life.)

He wishes he did not have to stay on it, but as he is young (54) and his CLL had developed poor prognostic factors, the doctor will want him to stay on Calquence until progression (let's hope not!) or until any kind of side affects become intolerable.

I wish he was back to how he felt before getting CLL, but the med has helped him regain about 70% of his life, and he's improving little by little all the time. I'll take him at 70% over being bedridden and unable to drive as he was a year ago, and we're both so glad he did the treatment.

Best of luck to you!