Acalabrutinib versus Covid19?

[spanish36]

Various reports suggest that CLL patients in clinical trials prescribed Acalabrutinib who contract covid 19 are surviving well due the anti inflammatory impact on the covid 19 virus as a result of the Acalabrutinib?

It will be greatly appreciated if CLL patients who are taking Acalabrutinib and contracted covid 19 might comment on their experience?

I am a CLL patient in an Acalabrutinib clinical trial doing all possible to avoid catching covid 19. I had my 4th covid 19 vaccination today but remain extremely concerned as to my chances if I get covid 19.

Other patients experiences will be much appreciated. Thankyou.

[Panz]

Yes, I am on Calquence, have had 2 Pfizer shots, 2 Moderna shots and 2 Full strength Moderna Boosters and have had Covid with no issues. I tested positive for having antibodies from a direct infection and didn’t make any antibodies from the all the shots until my first full strength Moderna Booster and that showed 18,000. I will be tested in July to see if the Second full strength Moderna added any more.

I also receive IVIG every 4 weeks and may be picking up a few from that but no way o prove that. However, research has shown there to be antibodies in the Gammagard that I receive.

I remain very cautious of my activities and just where I go. I always am masked and I wear an individual air purifier.

We all just try to do what we can!!! All the very best!!

Panz 🙏🙂💕☘️

[Elle_V in reply to Panz]

Hi Panz,I never knew individual air purifiers existed. I did a quick google search after reading your post. If you don't mind me asking, which one do you have?

Elle

[Panz in reply to Elle_V]

I have an AirTamer A315. I love it!!! I bought it on Amazon.

Panz 🙏🙂💕☘️

[Elle_V in reply to Panz]

Thank you!! I will get one.

[Panz in reply to Elle_V]

If nothing else it is just a bit reassuring…..I haven’t changed my life style, however, I do shop my out groceries early morning, go to Church on Tuesdays when the Church is all but empty and I get my haircut every 6 weeks. I do continue to wear a mask, wash hands and keep the 6 foot distance.

Please let me know how you are doing!!! All the very best!

Panz 🙏🙂💕☘️

[Elle_V in reply to Panz]

My kids have been in virtual school the last 2 years. I'm sending them back to in school classes this September. I'm soo afraid of catching Covid. I will be getting an air purifier for my bedroom and maybe for theirs as well. This personal air purifier will hopefully give me that little bit of added protection as you say.

Stay well!!

Elle 😀🙏

[spanish36 in reply to Elle_V]

Hi Elle_v I love your white rabbit. Yes its not not knowing how each of our systems will cope with catching covid which causes much concern. Some people with CLL appear to experience little illness. Others become gravely ill.

I guess we can only take all precautions such as vaccinations, mask wearing, hand washing and avoiding over crowded places.

I have in place arrangements with my Doctor to access anti virals immediately should I contract covid.

Anyway I hope you and your family keep well.

Cheers Ross

[Elle_V in reply to spanish36]

Hi Ross, Our bunny is quite fun!

It's hard for a lot of people to understand our precautious ways, only another CLLer or immunocompromised person can really understand.

I just found out that here, in Toronto, once we get a positive PCR test we will have access to Paxlovid and it will even be sent to us by courier. I hope I will never need it!

Stay well!

Elle

[spanish36 in reply to Elle_V]

Thanks Elle. Toronto is a gorgeous city. Great that you will have antiviral access if needed.

You are correct. Those fortunate enough not to have a cancer or other chronic disease dont understand our fears.

All the best.

Cheers

Ross Perth WA

[Panz in reply to Elle_V]

I work very hard at staying well…I live in FL and this morning I was sitting out front about 7am when my neighbor came out to walk one of her dogs and promptly told me that her adult son tested positive for Covid just this morning, he works at a local Publix. And so it goes we just have to say on guard at all times.

My personal purifier does make me feel a tad safer.

What brand of room purifiers are you looking at!

Have a safe weekend…we are staying home but we shall go out to First Watch for breakfast on Memorial Day on Monday. We shall go right when the open to avoid the people. This is a special thing for us and you can just bet I shall be very much on guard.

Love hearing from you! Be safe!

Panz 💕🙂🙏☘️

[Elle_V in reply to Panz]

I'm not which one to get yet. It's on my to do list for over the summer. I've hear the AirDoctor is very good but I still have to research other brands as well. Good hearing from you too!

Take care!

Elle

[spanish36 in reply to Panz]

Hi Panz

I dont use an air purifier. Our home has several large security screen doors which means we have lots of fresh air circulating as sliding glass doors are open.

Likewise with our bedroom.

I'm sure purifiers work well.

Yes keeping safe from people who don't understand our predicament or don't care is a constant battle.

Stay safe in delightful Florida.

cheers

Ross

Perth West Australia

[spanish36 in reply to Panz]

Thanks.

[spanish36 in reply to Panz]

Thanks Panz. Good luck.

[lankisterguy Volunteer]

Hi spanish36,

-

I'm also on Acalbrutinib, and in the LLS.org study that tested for COVID-19 antibodies ciitizen.com/lls which showed that I had >2500 reactions to the T-spike protiens.

-

But I am not depending on them to protect me completely, so I also use masking and distancing to improve my odds (see the swiss cheese image below). I got Evusheld injections when my doctor and hospital had them available.

-

If I do get exposed or test positive I have this packet of info filled out

cllsociety.org/covid-19-hom...

so I and my wife know what to do and where to go to get Paxlovid or whatever is the most effective treatment.

-

This may seem like belt & suspenders (braces) but I don't want to try to beat the odds in a hospital ICU.

-

Len

The Swiss Cheese model for COVID-19 avoidance

[spanish36 in reply to lankisterguy]

Thanks Len. Yes I also have arrangements with my GP to receive anti virals should zi contract cv19.

Unfortunately my GP wont test me for my level of cv19 antibodies here in Australia? Reason offered is the result not meaningful????

Thanks.

[MystyUK]

Hi, I contracted covid whilst on acalabrutanib during the first wave, pre vaccine. Since then I have had it again, both times I have come out of without any serious issues.

[spanish36 in reply to MystyUK]

Thanks MystyUK. Your experience is most encouraging. Here in Australia covid remains rampant. I take all precautions but maybe sooner or later?

My GP will provide antivirals immediately should I contract covid. Looking good from your experiences.

Thanks for sharing.

[kitchengardener2]

I was prescribed Acalabrutinib in August 2020. Luckily (🤞🤞) I have avoided Covid19. I have just started to rejoin life with caution. I have lived in fear of contracting Covid19 so I continue to avoid crowds. Will certainly be interested in this research.

I have had four Pfizer jabs and one Moderna. I don't appear to have any antibodies.

[spanish36 in reply to kitchengardener2]

Thanks Kitchengardener2 for sharing your experiences.

[stevesmith1964]

Hi , I am on acalabrutinib, 4 shots of vaccine. Had covid 3 times .. Alpha , Delta and Omicron, only hospitalised once as a precaution with Delta. On all 3 infections I immediately stopped acalabrutinib as Covid has decrease Platlets and as acalabrutinib can add to that thus increasing a PE, that's why I was hospitalised with Delta due to PE risk.

[spanish36 in reply to stevesmith1964]

Thanks Steve. Seems like Acalabrutinib might be a good thing.

Thanks for your update.

[spanish36 in reply to stevesmith1964]

Thanks. Glad you recovered successfully from covid 3 times. Keep well.

[juli65]

Hi im on acalutrinib iv had covid twice now with no major problems and iv had no booster shots either I try to live life as normal as possible xx

[Momlyn]

Had J&J March 2021, Pfizer booster Sept. 2021, COVID Jan. 2022, a mild case. I have 17p, TP53, unmutated. Was on a clinical trial AOV since August 2018. Only on Acalabrutinib now. I do get out and about a lot, no mask, but am very careful. I live in the Midwest USA.

[spanish36 in reply to Momlyn]

Thanks Momlyn. All the best to you.

[Davidcara]

The thought is, BTK inhibitors maybe help decrease the cytokine storm that sometimes results from covid. Once the cytokine storm happens, the person is pretty darn sick. So if Acalabrutinib helps decrease this effect, obviously it is a good thing. I feel there is really no way to know if people on CLL treatment would fair better than people who have CLL without treatment. Maybe if the treatment is working it could pump up your immune system. But make no mistake, even though many with CLL get a “light” case of covid, many who contact it may not fare as well. There is no changing the following, treatment or no treatment: We have a fractured immune system and want to avoid all infections as best as we can. Love it or hate it, that’s my little take on the subject.

[spanish36 in reply to Davidcara]

Thanks Davidcara. I concur with your comments completely. It really is unknown territory as to who with CLL will become extremely sick or will brush covid off with minor symptoms.

In the event Acalabrutinib provides extra protection against covid; great. Problem is none of us know who might be the lucky ones and who wont.

My approach is to expect the worst and for that reason adopt all available precautions. Fully vaccinated. Mask wearing. Hand hygiene and avoiding public places as much as is practical.

I also have in place arrangements with my GP Doctor for immediate access to antivirals should I eventually test positive to covid19.

Keep well