New to Acalabrutinib

[Vizilo]

Diagnosed with CLL (with17p deletion) about 7 years ago. Terrified by Googling CLL at the beginning. Luckily, I have been symptom free since then. However, because my neutrophil count has been very low for the last couple of years, my oncologist suggested starting on Acalabrutinib to reduce the risk for a potential severe bacterial infection.

I worried about potential side effects, but three weeks in I have experienced only some early morning sinus headaches which seem to be easily managed by strong coffee. Here’s hoping that’s the worst side effect that I will experience.

[SOLLYTHEGOLLY]

The coffee handled the headaches for me too. Had some oral blood blisters and some petechia, but all in all a pretty good experience. Hope your journey is equally as uneventful.

[cllady01 Former Volunteer]

Welcome Vizilo, I see you just joined us today. Thank you for the information regarding your treatment with Acalabrutinib for the first 3 weeks. Off to a great start. I hope you will continue to keep us updated as we learn from each other what might be expected of treatment while we also know that each of us is different and our experiences may very well differ at some points,

Keep up the good work! It seems to be the case for most--fear rules until we have experience--the unknown IS scary no matter how much we are told all will be okay. Then, we become the ones telling others, it's gonna be okay, don't be afraid.

[Bill1288]

Vizilo: Glad to hear you are off to a good start with acalabrutinib. It has really helped me. I have been on for 22 months, switching from Ibrutinib due to side effects. I occasionally get some minor muscle and joint pain, and use biofreeze to help. All my blood work has been very good. So wishing you the best. Bill1288

[nvp815]

Welcome to the acalabrutinib club!! I have been taking it since January 2018. All my blood tests are normal at this point. It is an amazing medication. Side effects for me have been relatively minor. Wishing you much success and good health. Stay well. Looking forward to reading updates on your progress.Warm regards,

Nan

[BallyB]

I also experienced headaches initially and coffee worked great for relieving them. Headaches went away after three or four weeks.

[bkoffman CLL CURE Hero]

Many find that the HA is their worse issue with Acalabrutinib. Coffee is a good therapy and the HAs will dissipate. Acala is usually well tolerated and very good at controlling CLL. We have a nice summary on it written bu CLL pharmacist, Tom Henry: cllsociety.org/2020/03/thin...

[Eucalyptus22]

Glad you have started well. My journey too has been quite uneventful in terms of side effects. Did have a problem with the antibiotic and the steroid at the beginning but not with Acalabrutinib. Bloods now normal after 4 months and feeling great. This site was very helpful as its were I learnt to take a coffee after the tablet to prevent a headache. Never had a headache but loving my coffee.

[Vizilo in reply to Eucalyptus22]

Because of all the inputs from people like you, I now don’t worry about “the other shoe to drop” i.e. more side-effects later in the treatment. My only problem at the start was a requirement to stop taking a daily proton pump inhibitor (ppi) for my heartburn/acid reflux. These drugs reduce the effectiveness of acalabrutinib. Except no one told me about the potential for a rebound/withdrawal effect from suddenly stopping ppi’s: so, 2 weeks of suffering from heart burn. Strange, the side-effects of withdrawal have been greater than the side effects of starting on acalabrutinib.

Thanks to all for their kind and thoughtful initial input

[Test_Tech in reply to Vizilo]

Hello Vizilo,Did your heart burn or GERD completely go away or are you taking something to address that issue.

Thanks

[Vizilo in reply to Test_Tech]

No, the heart burn remains after 6 weeks but it is not as intense as those first 2-3 weeks. I manage to control it with ranitidine - 150 mg once per day or less (3 hours after I take the Acalabrutinib). In Canada, you can either have it prescribed or buy it over the counter as Zantac 150. I believe it’s no longer sold in the US but you could try any H-2 receptor blocker such as famotidine (Pepcid).

With the ppi, I never had to worry about heartburn or acid reflux. Now I take ranitidine whenever I feel the heartburn coming on. But it’s a small price to pay if acalabrutinib gets my cll under control