Short term stopping Acalabrutinib

[kitchengardener2]

As I have reported, I currently have Covid19. Last Friday I was prescribed and began taking Antivirals. The course is for five days. I was told by my consultant that I should stop my Acalabrutinib for a week. I can't feel any raised lymph nodes but my neck feels bruised. Does anyone know if stopping the Acalabrutinib will have a detrimental effect. I hope not because I have tolerated and done really well for nearly three years.

[cajunjeff]

I have paused calquence a few times for various reasons over the years with no problem. Some people have gotten off btk drugs for extended periods of time and restarted. Based on what I have read, I dont think pausing is an issue for most people.

[Zeus52 in reply to cajunjeff]

I’ve paused my Acalabrutinib several times since starting it in 2021 with no ill effects at all. I had surgery in 2022 and it was paused for about a month and then again for a few weeks in 2022 at the end of my chemotherapy for endometrial cancer. I also paused when taking the Paxlovid in Feb. I hope you are starting to feel better.

[AussieNeil Partner Administrator]

This long term study of progression free and overall survival for ibrutinib showed no difference between that for patients who took short term breaks (typically for elective surgery) to that for those who hadn't taken breaks.

ashpublications.org/blood/a...

"In conclusion, we found no evidence that clinically indicated ibrutinib dose reductions or interruptions compromised long-term outcomes."

I would expect the same outcome for acalabrutinib and other BTKi drugs.

Neil

[kitchengardener2 in reply to AussieNeil]

Thanks Neil x

[Katie-LMHC-Artist]

I recently had surgery and paused for 7 days. I had an increase in headaches and fatigue although the fatigue could be part of recovering from surgery. I’m back on Acalabrutinib. I did not have any unusual bruising or issues with lymph nodes. Hope this may be helpful!🦋

[Eucalyptus22]

I have had 5 breaks in my 3 years for various reasons. The breaks haven't made any difference on any occasion. When I was chosen for the IMPROVE trial the consultant said it would make no difference being off for 3 weeks. Hope that helps.

Hope you're feeling a bit better now.

[Walkingtall62]

Hope the antivirals worked. Take care

[kitchengardener2 in reply to Walkingtall62]

Three more doses but I feel so sick. I don't feel ill with what I would expect covid to do. Just drained x

[Spiritlove11 in reply to kitchengardener2]

I felt very sick when I had COVID but as you say it may be the anti virals causing it. Sounds awful. I have been thinking about you and do hope you feel better soon xx

[kitchengardener2 in reply to Spiritlove11]

Thanks Lynne xx

[Walkingtall62 in reply to kitchengardener2]

I was just wiped out. A few days I just didn’t get up. I ate like a horse and was positive for around three weeks. When I tested negative I didn’t feel any better but very slowly I am getting my head back and the ability to do one or two physical things. No idea of course when this will end. I do hope you are in the mend soon. Xx

[stevesmith1964]

I have stopped multiple times in.last 3 yrs for various reasons... 5 to 10 days at a time., no detrimental issues , monthly bloods good, 6 monthly mrd checks all good

[Nucleusman]

I am also on anti virals because of Covid but no one has told me to stop Acalabrutinib. What type of consultant told you that??

[Katie-LMHC-Artist in reply to Nucleusman]

drugs.com/drug-interactions...

There is some info on Drugs.com and the National Institute of Health (US) have info regarding the problem of taking both drugs at the same time. My oncologist also advised me to stop the Acalabrutinib if I have to take Paxlovid. If you are taking both then I would advise you to have a blood draw after. I’m sure you will be ok but check with your medical provider. Hope this helps!

[Nucleusman in reply to Katie-LMHC-Artist]

thanks

[kitchengardener2 in reply to Katie-LMHC-Artist]

I am taking Molnuprivar, four huge tablets twice a day. My next blood check is due in January.

[kitchengardener2 in reply to Nucleusman]

The cancer ward checked with my hematology consultant and she said to stop for a week. I think it's the antivirals causing the sickness.

[Katie-LMHC-Artist in reply to kitchengardener2]

I have a client that took Paxlovid and had some of the same symptoms you are having. I think it’s a strong antiviral. I hope your able to manage the side effects and recover quickly!💜

[KatieBlue in reply to Nucleusman]

Paxlovid has about 28 pages worth of contraindicated medication interactions. Pretty sure all of the BTKi drugs are listed there.

Thankfully, those usually can be paused. Some people are on medications that cannot be paused or would have to be tapered off, which takes more time than the window for starting paxlovid would allow.

Molnupiravir likely has similar contraindications, however, it has been shown to be less effective than Merck originally claimed, and is highly mutagenic.

I have an older friend who is not immunocompomised, and had paxlovid. She tested positive for 21 days (and had rebound). Immuno compromised folks can take longer than those with healthy immune systems to test negative. (Even in MyChart they mentioned if coming in for an appt to call if it’s been less than 10 days since covid— and less than 20 days if immunocomp. ) Jusy observing that if those with healthy immune systems are routinely taking more days than the CEO of Delta lobbied for to become negative, then those with immunocomp immune systems are likely to take longer still.

There has been a lot of discussion on social media about the tests not picking up the current variants for 4-5 days after symptoms start— and there’s a better chance of test accuracy if one swabs throat, cheek and nasopharyngeal area.

[Nucleusman in reply to KatieBlue]

have spoken to haematologist and no need to pause Calquence however worried having lost £300 on Xmas day luncheon may possibly lose the same amount for New Year’s eve supper. Testing positive after 6 days!!

[kitchengardener2 in reply to Nucleusman]

Heamatologist nurse from York rang. I have to leave the Acalabrutinib off until next Tuesday. She wants to speak to Dr Munro and will call back on Tuesday. She said that I must drink more. I had a rasher of bacon this morning, tried a slice of bread but it tasted sour. Food just doesn't taste of what it's supposed to do. Have taken the last antiviral this morning si hoping my tummy settles now. Needing to sleep more and don't feel any better for it. xxx

[Walkingtall62 in reply to kitchengardener2]

Good luck!

[MisfitK in reply to kitchengardener2]

You do need to drink...constantly.

If smell/taste is a problem, try icing everything. Ice water, popsicles, frozen pedialyte. Freezing product deadens all the flavors but sweet, so it should be the easiest to handle.

[Walkingtall62 in reply to kitchengardener2]

Hi, how are you feeling now. Hope the bacon is tasting better!

[kitchengardener2 in reply to Walkingtall62]

No way, just struggled to eat most of a boiled egg and half a slice of toast. Tasted like pure salt.

Tony rang the nurses this morning, they said that I needed high protein food, little and often.

[MisfitK in reply to kitchengardener2]

Have your spouse go buy some bone broth. You can sip it all day, and most bone broths have between 10-20g protein per cup.

[Walkingtall62 in reply to kitchengardener2]

Do take care and keep in touch with your CLL nurse if possible. Take care

[Nucleusman]

many thanks have sent a note to my haematologist and await a reply after xmas

[Eucalyptus22 in reply to Nucleusman]

I have been told by my consultant to stop Acalabrutinib if I get covid.

[Mtk1 in reply to Nucleusman]

I never stopped my acalbrutinib while taking paxlovid, asked my haematologist and he said continue taking it.

[kitchengardener2 in reply to Mtk1]

I have Molnuprivar and she said stop for a week.

[Mtk1 in reply to kitchengardener2]

Yes I would listen to your consultant, just saying mine didn’t want me to stop taking my acalabrutinib, is Molnuprivar different to paxlovid?

[kitchengardener2 in reply to Mtk1]

Yes it's different, blurb says that they will usually prescribe Paxlovid first so don't know why I was given these. Heaven only knows what's in them! They are about half an inch long, a rusty red capsule case and four have to be taken twice a day. I get them down but as soon as they start to dissolve, my stomach starts turning over. I can't even manage a drink of water. Apart from a bit of chicken yesterday, I haven't eaten anything since last Tuesday night. I wouldn't wish this taste on my worst enemy.

Tony just made some chicken soup but it smells like rotting vegetables.

[Jetliz in reply to kitchengardener2]

You really are having a rough time it does makes you wonder if its the anti virals. Hope you improve soon.

[Mtk1 in reply to kitchengardener2]

Hopefully you will start feeling better soon, I know paxlovid leaves a horrible taste in the mouth, keep warm and rest up.

Dave xx

[Nucleusman]

thanks

[francc]

I've been off ibrutinib over 1-1/2 years now. My labs are good and some are better than when on it. Many of us who developed AFib are experiencing the same results. So I am guessing that being off it for a week won't make an dent in your numbers.

[kitchengardener2 in reply to francc]

Thanks for that. I have swollen neck nodes which could/could not be due to the virus. My friend (retired CNS) says most probably virus.

[AnneHill]

Have you tried drinking milk? It helped when I had chemo. I took the tablets with milk. Anne uk

[kitchengardener2 in reply to AnneHill]

I am drinking Complan, milk meal replacement. Thanks Anne

[AnneHill]

That should help keep you strong, I hope you are recovering. Covid and Flu numbers are rising, Anne uk

[5214]

I have been on acalaquence for about 2 years taking one in the morning and one at night and I couldn’t do it so I just take one at night! When taking 2 my white cell was three points off to be in range. I went to see my oncologist and my bloodwork wasn’t very good. He thinks it’s because I’m going through a divorce after 27 yrs of marriage so I’m really trying to do better but I have a feeling he will put me back on two! Do you know anything about 3a kidney disease?