Newest Vaccine and BTKi

[Davidcara]

Wondering if the following is worthwhile: Knowing my Oncologist will probably advise against it, in the past he has told me better to deal with covid infection instead of holding CLL medication in an attempt to get a good vaccine response.

13q Muted, off Zanubrutinib since July 22nd, due to covid infection. Yesterday and today are the first days of testing rapid test negative, since becoming infected on July 21/22. . Had labs yesterday, everything looks good. Prior to July 22, had been on BTKi continuously for 2 1/2 years, without issues.

While on ibrutinib had 4 vaccines, made zero antibodies, while on zanubrutinib had one vaccine, made zero antibodies. Thinking about asking oncologist, try to hold zanubrutinib for a few more weeks while getting covid vaccination in attempt to make some antibodies.

Thinking maybe being off BTKi, I might make some antibodies. Wondering if anyone has had experience that might have been similar to this.

[CycleWonder]

Acvording to the CDC, it is recommended to wait 3 months after a bout with Covid before getting the updated Covid vaccine.

[cllady01 Former Volunteer in reply to CycleWonder]

Here is CNC report stating the timing can help with the possibility of immune response.

cnbc.com/2022/09/06/people-...can-wait-to-get-omicron-booster-health-official-says.html

Note: CAN, nor MUST---and is tied to the immune response, which is an iffy and pretty much unknown for we who have been or are on treatment.

I haven't found the CDCs direct statement to verify that, but this doe provide a sample of something to ask a question about before getting the new booster.

Also, as we know the treatments we have may have a negative effect on the immune response we get--so, nothing seems to be set in stone---which we are used to by now.

[CycleWonder in reply to cllady01]

Here is the link where I read about the timing after having Covid:

cnn.com/2022/09/08/health/o...

[Davidcara in reply to CycleWonder]

Thanks for the reply. I am hoping for some personal experience with this. Unfortunately, listening to the CDC is not always the best advice. Especially if you are immune compromised; the CDC advice for us is usually vague. I have heard many experts said wait three months, then they say well, wait two months. The advice is for people who actually make covid antibodies after an infection. I have heard others say you can get vaccine after you recover. Definitely will not be listening to the CDC on this. In all reality will probably be back on zanubrutinib after speaking with my oncologist.

[Davidcara in reply to cllady01]

Thanks for the reply. The guidance for immune suppressed people is not always clear. Definitely not set in stone.

[country76]

I am taking Alacabrutinib and have experienced no antibodies, I had the series plus two boosters. I had my second Evusheld last month. I did not test for antibodies after the Evusheld.

My doctor did suggest I take Paxlovoid if I caught Covid, however I am taking also two blood pressure meds and would have to stop everything for a week. Also it is debatable whether I had asymptomatic Covid last year. If so I wouldn't even know if I had Covid.

[Davidcara in reply to country76]

interesting, I took bebtelovimab on day one, and now am just starting to test negative. Might take my chances with paxlovid if available and in the unfortunate event I should test positive again. Will continue wearing N95, just thinking I now need to start masking the in my home around my wife and kids, at least for a while. I cannot go through this again. At least not in the near future. Maybe I will drop down to KN95 when at home.

[TruthJunkie in reply to Davidcara]

Is taking the Evusheld injections not an option for you? It is truly difficult to know what one can take.

[tesoro5858 in reply to Davidcara]

Davidcara, I read your profile and saw this post after we shared comments about COVID today. I agree with you about wearing masks around my spouse, who is not as careful as me as he is not immune compromised. I so do not want to experience COVID again! Plus, the newest variant, BQ.1 is increasing so rapidly that it is expected to get it's own Greek letter. The bad new is it completely evades Evusheld and bebtelovimab. I will likely wear KF94 masks as my step down mask at home. There is no evidence that they are counterfeit like many of the kn95 masks are reported to be.

[SofiaDeo in reply to tesoro5858]

If you have the money, room/house air sanitizers can reduce viral load in your environment. Without wearing masks around the house.

[tesoro5858 in reply to SofiaDeo]

SofiaDeo, I so very much appreciate your information sharing in this forum. I learn so much from you. I have invested in air cleaners for specific purposes based on your comments. I will incorporate their deployment so I can minimize my in home mask wearing.

[Davidcara in reply to tesoro5858]

I will have to check out KF94

[country76]

I choose the Evusheld. My doctor was trying to talk me out of it.

It would be difficult although I would certainly wear a mask around my family and stay away from them the best I could if I had Covid.

[Davidcara in reply to country76]

just last week my MD was hesitant to order Evusheld for me. Said something about less covid around. I did not push it because, I just got my booster. Will work on getting Evusheld in a couple of weeks. Unless it really looks like BA 5 is going away, and variants that are not Evusheld neutralized become dominant in my area.