Acalabrutinib and social life

[Artlover1908]

I'm about to start taking acalabrutinib and I belong to quite a few social groups. Do I have to take any special precautions. My consultant expects me to be on it for a number of years .

[zaax]

Keep away from people with shingles or who have had the Shingles jab for a while.

Shingles is of real concern for CLL patients because of their compromised immune system, which means that the virus can be more severe and difficult to control. - cllsupport.org.uk/informati...

[Artlover1908 in reply to zaax]

Thanks, I'll mention that to my friends.

[2016Longevity]

you may find some helpful info, answers and tips in the thread/conversation under the subject name “A question about being immunocompromised” (see my post referenced below) healthunlocked.com/cllsuppo...

[AussieNeil Partner Administrator in reply to 2016Longevity]

Good redirect thanks - I've added the link.

[Artlover1908 in reply to 2016Longevity]

Thanks I'll have a look.

[stevesmith1964]

Hi. Following O+i treatment of my stage 4 CLL bacback in Nov 2020, i moved from Ibrutinib to acaacalacalabrutinib 14 months ago. I lead an full social life as i did before covid and before CLL... just avoid Grapfruit and Seville oranges

[Artlover1908 in reply to stevesmith1964]

Thanks, sounds good. I have to avoid those fruits anyway as I have other health conditions.

[kitchengardener2]

I have been taking Acalabrutinib for about 15 months now. Before the covid pandemic I carried on my life as normal, we have lots of social groups. The only thing I did was to avoid anyone with colds or infections and I asked people not to visit if they were infected. Since Covid it has and will continue to be very different. We haven't been to any groups and we are extremely careful about wearing masks in shops etc. We have bought some FFP3 masks for our planned winter holidays and will try to avoid people in airports etc.

I asked how long I could expect to take the Acalabrutinib and my consultant just said 'as long as it working '. Good luck. Alice x

[Artlover1908 in reply to kitchengardener2]

Thanks, I've been lucky. I have continued going to my groups, and luckily haven’t caught covid although other people in groups did. May be the number of jabs helped. I also wear a mask in supermarkets and use the hand gel. (Though I've had my groceries delivered since pre covid, so its very rare) going to remind my friends re the shingles jab, as there are varying ages in my groups. Usually we dont get a jab till we're 70. I'm past that. I'm hoping to continue going as this helps me cope. Hope you have a good holiday.

[Eucalyptus22]

Due to being on Acalabrutinib and not producing any covid antibodies I am still leading life in a bubble. No mixing indoors with anyone and I wear an FFP3 mask for medical appointments. Acalabrutinib is a wonder drug for us but the downside is that we don't respond to vaccines like other people do. Also we are very prone to infections as per the link above in 2016Longevity. Its better to know your risk and then judge for yourself what you are comfortable with.

Good luck

[Artlover1908 in reply to Eucalyptus22]

Yes, infections were how I was diagnosed, my doctor wanted to find out why I didn’t respond to medication. I'm hoping taking the precautions I already do will be okay. I wondered whether acalabrutinib made me more vulnerable than previously. Thanks, its always interesting to see how others cope.

[stevesmith1964]

cllsociety.org/2020/03/thin...

This outlines the issues with Seville Oranges and their effect on acalabrutinib, thus should be avoided. Grapefruit and Oranges are ththe only foods or drinks i have stopped eating