CLL and covid vaccines

[Hotrods4me]

Was on watch and wait for about 3 years then went on I brutinib I became very sick and ended up in the hospital I didn't really know what they were doing or checking for as I was then told at my local hospital they can't do anything for me and sent me to the medical center in Houston. There it was discovered that my white count had gone up to 302,000. During that stay I was then informed that that is normal for the white count to go way up and then stabilize and go back down which it did and on my last blood test it had gone all the way down to 12. My PCP doesn't know if I should get a vaccine because there has really been no tests that she's aware of on CLL patients to gauge their reactions. I have read many articles on this site about the vaccines in various countries. My oncologist hematologist last visit didn't really give me an answer as I am also anemic and taking various medications for other things. Would appreciate any comments and advice on this as I really don't know if I should get a vaccine and what are the chances that it would just make matters worse.

[Davidcara]

Seems like you have been through a bit. I think you need to discuss this with your oncologist. As you probably know, the vaccine is approved and encouraged for most all adults. For me, 65 year old, on ibrutinib with stable labs, L looked at it this way. Take the vaccine, which might not even work, and take the chance of potential side effects.......versus......Not taking the vaccine and take my changes with potentially getting covid, and every thing that could come with that. I took both doses of Pfizer vaccine, but I would have taken one of the other vaccines if they were offered to me first.

[lankisterguy Volunteer]

Hi Hotrods4me,-

Several folks have expressed concerns about side effects and reactions to the COVID-19 vaccines, and we have no proof that being vaccinated makes you 100% immune to the virus. But there is a high probability that the vaccine will make you far less susceptible to serious symptoms, hospitalization and needing a ventilator.

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But if you don't get vaccinated, and have no other treatments when symptoms start, between 20% & 30% of folks with CLL do not survive.

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The doctors have an effective treatments for anaphylactic reactions and for most side effects like low platelets or low neutrophils. So all or nearly all survive those.

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We has several past discussions like these:

healthunlocked.com/cllsuppo...

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Please look on this page for the box labeled Related Posts

*CLL and covid vaccine - efficacy and side effects? healthunlocked.com/cllsuppo...

*Cll and covid vaccine uk healthunlocked.com/cllsuppo...

*CLL - Pfizer Covid 19 Vaccine healthunlocked.com/cllsuppo...

*Which CLL experts are recommending getting the Covid 19 vaccine? healthunlocked.com/cllsuppo...

*University of Birmingham Trial for CLL Patients Response to the Covid Vaccination

healthunlocked.com/cllsuppo....

Len

[lexie]

My CLL specialist at OSU, Dr. Byrd, is recommending Covid vaccine for all his CLL patients which run the gamut from W&W to advanced treatment, if this is of any help to know.

[GMa27 in reply to lexie]

Dr. Byrd is great! Does he still not recommend Shringrix shot? He said it was tested & would not be beneficial for CLL patients. I recently reached out to him for update opinion on that.

[SofiaDeo]

Does your onc or GP recommend a yearly influenza shot? If there is some medical or drug related reason you shouldn't take any vaccine shots in general, then definitely discuss with your GP. As far as "recommendations from CLL specialist docs" go, they generally advocate for patients to get a Covid shot, unless one is at a point in treatment or other medical reason not to risk an immune system reaction. Lankisterguy has given links above which we all have been discussing intermittently. We CLL'ers may or may not respond very well, but even some small protection can mean the difference between hospitalization/risk of dying, or milder disease/not dying if you contract Covid.

[Blackbelt5]

First you must tell me about the motor on your post and what car or truck is it in. I had the Pfizer vaccine but have since read a Pfizer study in the UK that the vaccine only protects leukemia patients at 18% verses healthy patients at 98%.

[22011 in reply to Blackbelt5]

That's depressing news. I was told it would be lower than normal but 18% sucks. Could you give a link to that study? Thanks.

[Blackbelt5 in reply to 22011]

I have an apple phone and I read the article on apple news. If you have an apple phone just search for Pfizer study and you will be able to read the article.Gary

[Hotrods4me in reply to Blackbelt5]

That is a 65 GTO with a 389 and 3 deuces!!! Sorry for the late reply but somehow I ended up in gmail which I don't use and I don't know how this site now is Gmail sometimes I check it and there's messages in other times I check it and there's no messages now today I check it in there several months.. messages.

[Blackbelt5 in reply to Hotrods4me]

Thank you for the information on the motor, 65 GTO, very nice. You and I grew up in the same time period, GTO,442, Road runners, SS396. That was a great time. I ended up being a Mustang guy. The car on my photo is a 2019 Mustang Bullitt and I love it. I just bought a Shelby gt350 before they go away, Had a cop follow me yesterday for about 2 miles. I guess when he saw that I have a disabled veteran license plate and was 70:years old, if he ran my plate he decided to leave me alone.