Ibrutinib (acalabrutinib)

[Mik_]

Acalabrutiunib/ibrutinib

Can anybody share if you manage to work as "normal" and if your job requires to travel? how long it takes adaptation to pills? what do you use for minor skin cuts to stop bleeding?

[cajunjeff]

I have been taking Ibrutinib for two years. I adjusted to it almost immediately. I travel a good bit with work and for fun without any restrictions. I don’t find that I have any unusual bleeding problems with Ibrutinib. My worst side effects have been occasional diarrhea which is manageable and about a 15 point uptick with my blood pressure. Good luck.

[Mik_ in reply to cajunjeff]

Thank you for sharing with me. For two weeks I started I cannot imagine it will be so good as you described but it is very good point to expect that my body can tolerate it. Thx again!

[lankisterguy Volunteer]

Hi Mik-

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I see you just joined us today, but have a long complex background, - from your profile: "19 years survivor with B cell in marginal zone, B cell diffuse and mantel cell lymphomas. currently on Acalabrutinib"

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I expect you will hear many diverse opinions, since even with plain vanilla CLL we all experience things differently (heterogeneous is the "med speak" word). Many CLL patients have few problems with starting either Ibrutinib/Imbruvica or Acalabrutinib/Calquence, but 20-30% have some early side effects that decrease over the first year. The good news is that in most cases, pausing or stopping the drug resolves the side effects.

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Some portion experience more severe symptoms and either require reduced doses or switching to a different medication. This is where it helps to have a CLL or NHL expert doctor closely review your history and past health issues (med speak: "co-morbidities"), to determine which drug to try first, and what to do if you develop side effects.

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So, bottom line, I doubt that we have sufficient data to predict how you will react, and whether you will have problems that will interfere with travel. Sorry.

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Len

[Mik_ in reply to lankisterguy]

Than you Len.

The idea was to learn the experience of several patients and be able to make some “personal” averaging. I am in Med research for over 25 years, but it does not so helpful to have read the paper that stated the positive response is between 49 and 80% or particular side effects may be appeared in 11 or 5 or 20% of patients. The number of MCL patients is much less compared to CCL and toxicity and side effects are practically similar. Therefore, I try to get some preventive driving tips.

Mik