Covid Vaccines

[Kmegood]

Hi

Anyone have any comments about taking a 6 covid vaccine? After 5 vaccines is it necessary to take another one? Will it really protect CLL people?

[BeckyLUSA]

At my last visit in May, my CLL specialist said for me to get it. So I did.

[Cgolen99 in reply to BeckyLUSA]

So interesting the different responses/advice we get from our specialists. I had 3 full doses of Moderna. Last one being 09/2021. My Doctor strongly advises me not to get any further vaccine past that. She stated I already have the memory cells from the vaccines I have had (and I had Covid once). She is saying the research points out that further boosting creates a depletion in T cells and that can produce an increased chance of secondary cancers which we are already susceptible to. Just throwing out a different view from my CLL specialist. 🤷‍♀️

[BeckyLUSA in reply to Cgolen99]

I think a lot has to do with whether or not you are in treatment and how bad your immune system is already.

[Cgolen99 in reply to BeckyLUSA]

That could be. My numbers are all at normal now and I have only taken one 140mg Imbruveca since 4/2018 and I have IVIg infusion quarterly. That's it. She didn't indicate it had to do with me personally but only what repeated boosters can do to the T-Cells to higher risk folks and since I have CLL, I am higher risk. So I just follow her directions. She has kept me alive and well thus far! LOL! 🥰

[Kmegood in reply to BeckyLUSA]

Thank you. I will speak about it with my hematologist

[Kmegood]

No reactions to covid vaccines. Had 5 of them the last one Jan 3, 2023. So I will ask my doctor next month when I have the appointment if I need another vaccine. So far no one I know had 6 vaccines.

[jijic in reply to Kmegood]

I've had five and my doctor said to get my 6th in the fall. I did just get COVID again though.

[EmilyLondon in reply to jijic]

Yes I had Covid twice this year after dodging it for a long time. I was quite ill. Made me think the scientists were right that I needed a booster. So I went along and got my seventh Covid vaccination when I could.

[Rrriver]

I was told by my oncologist to keep up to date with the COVID vaccines as each time you get the vaccine , it helps a little bit more to keeping you safe. I was told to take the Covid vaccine for the most prominent strain of Covid in your area. In Canada right now it is omicron b a 4.5 and b a 5 so in March. /23 I took Pfizer bivalent and that was my 6th covid vaccine.

[Kmegood in reply to Rrriver]

Thanks for your comment. I will ask my Doctor when I habe my next follow up mid July

[Kvb-texas]

My CLL specialist no longer recommends it because of the waning benefit. Plus, I had Covid and never really felt that bad other than a back ache. Does the benefit of possibly having a less severe reaction to Covid outweigh the potential heart issues, and immune fatigue? That is something that each of us need to consider in our own personal situation. Having had Covid and recovered, I am a lot less fearful of it. Especially since I don’t have the morbidities most often associate with severe covid (obesity). I think most doctors are on autopilot when asked about it. I would press them for specific reasons why they do or don’t support it for your specific case. It’s always smart to have more information. I wish you well. Kvbtexas.

[Rrriver in reply to Kvb-texas]

I believe most oncologist are in full agreement that most cll patients should continue to stay up to date on their Covid vaccines unless they have a clear medical reason not to. I believe strongly that a lot of cll patients are beating Covid because they are up to date on their vaccines and not because Covid is getting weaker or going away. Best of health to all.

[Kmegood in reply to Rrriver]

Thanks fir your comment. I guess I will take the 6th in the fall

[Beaches64 in reply to Kvb-texas]

I agree 100% about most doctors being on autopilot regarding the vaccines. I, too, have been fortunate to have a doctor who discusses both pros and cons. Stay well.

[jijic]

Having just got COVID for the second time 6-months after my bivalent booster (5th shot total), I wish I'd gotten another vaccine sooner. This time around I wasn't very sick at all, so at least the vaccines were doing something, but I do wonder.

The CDC says every six months is fine; my German doctor worries that too many shots will kick my autoimmune disorder into overdrive. Hard to say.

[scryer99]

Like Jammin_Me I'm through 7 of them. #7 was while on treatment. The next day is not a lot of fun and I have been unwell enough to take time off most times. But it quite definitely beats getting COVID while having CLL.

As far as protection, the COVID antigen testing I have seen has been somewhat unclear on how much protection I am receiving. But I figure it's definitely > 0 and every bit helps.

I have not had COVID, while traveling 100k+ a year during W&W (somewhat interrupted by the general COVID world). By contrast, multiple colleagues in my line of work have had multiple cases.

I am pretty diligent about masking and social distancing, and moved to 100% work from home while in treatment. So did the COVID vaccine prevent COVID? Who knows? But I do know this: I'd feel like an idiot if I did come down with COVID and I had skipped the vaccine.

[jijic in reply to scryer99]

I sure feel that last sentence! I feel like an idiot for not fighting my doctor when she said (in April) that I should wait until fall (I had COVID last week).

[Kmegood]

Best of luck and good health to you.

[starlifter]

I ve had 6 covid vaccines the first three didnt take because they were destroyed by the chemotherapy, I was in treatment during the worst part of the pandemic , but always wore my mask and barely had any contact with anyone , it wasn t easy but now Im stage 0 and in remission 2 years ago I was receiving transfusions and had a severe thrombosis but I pulled through thanks mainly to the top doctors I had and venetoclax , the doctors and nurses were the real heroes of the pandemic.

[Kmegood in reply to starlifter]

I am happy to hear this encouraging news. Best of luck and health to you.

[esn1967]

I am in W&W and my CLL specialist at Dana Farber has just advised me to get the next booster.

[Kmegood]

Thank you for your comment.

[Kingfish6]

I don't make antibodies but my CLL doc encouraged me to get my 6th. Of course, then a couple days of nausea, etc.

[Arranbud]

I am on W&W and have had 7 vaccines with no bad reaction. I had Covid (very mild) a year ago in March. Last June many around me picked up Covid at an event and I avoided it. I am hopeful that was because I had built up some immunity through the number of vaccinations and having previously had Covid.

[kitchengardener2]

I have had seven, even though I don't appear to have antibodies, my consultant said to have whatever is offered.

[MovingForward4423]

I’m on 7 and the new one covers additional variants. Covid vaccines will become like the flu vaccine, and we will probably see one each year. Remember the virus never stands still so neither will the vaccines. I’m in remissions but I still take the new vaccines as and when I am offered.

[stevesmith1964]

7 so far, up for my 8th in autumn. My 5 Yr old ready for his 2nd. More the better I say.

[223dogs]

I have had 7 vaccines now and would be happy to have more as I feel they enable me to live my life as safely as possible

[Harvist]

My GP, my haemotology consultant, my type 1 diabetic clinic and my consultant for a heart attack 18 months ago, all said "GET EVERY COVID VACCINE BOOSTER OFFERED"

Duly followed. GP said get the Autumn booster asap too.

[Haileybury]

I have had 7. That’s normal in the UK if you are immunocompromised and are over 70.

Good luck.

[Vakraas]

I had my seventh shot this past month (1 original shot followed by 6 boosters). The advice from my haematologist and my GP in the UK is to keep taking them, and I get an automated reminder of when boosters are available because I've been identified as clinically vulnerable.

I'm on W&W. The only side effects I've had from my 7 shots are a sore arm and some slight general scratchiness for up to 48 hours afterwards; nothing too serious.

[blowinginthewind]

Up to now I have already had all 6 of my boosters as soon as they were available. However, I have been on the 2 week cancer pathway after serious bowel prolonged bowel problems. GP said it was ok to wait until we knew what was happening. I had the final tests on Friday, and although we don't have a diagnosis, I definitely don't have bowel cancer. which is great - but I don't know what I do have :-(.

My 6th vaccine made me rather ill - as in hallucinations and random pains, and temperature of 84 degrees - for about 18 hours. It was horrible and I don't want another covid jab. My haematologist said that perhaps I had a mild infection of some sort, which would cause those symptoms and that I must have the 7th one. I will have the 7th one, once I have spoken to gastro doctor again - some time this week - and I will pick the day carefully so that there is someone to look after me if I am ill again - and I won't have the same vaccine as last time.

Liz in Manchester

[Susanbarratt]

My husband has just had his seventh (2xAZ,2x Pfizer, 2xModerna, 2xPfizer. He had Covid during Easter and received the Paxlovid antiviral (which was very effective). His attitude is if it's available, take it.

[Graham64]

I've had chest infections and urine infection this year which I struggled to shake off. My doctor said that if I had a 6th COVID shot my immune system would be using a lot of resources fighting the covid jab, making me more susceptible to other infections.

[jonathan7176]

I’ve had six shots. 3 since cll diagnosis last year and start of treatment (Acalabrutinib). No real side effects and good antibody response. Not yet had covid as far as I know.

[The-Man-with-a-Plan]

Got 5. Won’t do it again till Sept/Oct.

[Fran57]

My husband’s CLL consultant has always said to say yes when offered… he’s had 7 so far .

Fran 😉

[DanBro1]

Covid is still out there. My son-in-law came down with it last week (he does work in a hospital but had not seen a case in 2-3 months). I have had 5 Covid shots plus 2 Evusheld shots. I will gladly take a shot every month if it keeps me safe from getting Covid! My suggestion to you is: Do it!

[bennevisplace]

The flow of studies on durability/ decay of vaccine protection dried up last year, so doctors now are extrapolating previous guidance or just playing their hunches.

From a fairly recent Scientific American article scientificamerican.com/arti...

"Protection appears to be restored after people receive additional doses over time, according to ACIP. “We are seeing very, very low rates—far less than 5 percent—of severe disease in people who are immunocompromised, well vaccinated and receive standard antiviral treatments..."

Personally I'm inclined to have another Pfizer bivalent before my GP surgery calls time at the end of June. It will have been 4-1/2 months since the last one.

[tola2222]

Had 5 Covid vaccine shots -- no problems. The 6th (bivalent) put me in doctors office. Diagnoses: Atrial fibrillation. I suspect there's cause and effect here.

[Moma64 in reply to tola2222]

I contracted Covid last Nov which sent me to the cardiologist with atrial fibrillation, too. I'm now on heart meds. I'm due my 6th shot.

[tola2222 in reply to Moma64]

Me too; Eliquis and Sotalol. Blood thinner and beta blocker.

[Moma64 in reply to tola2222]

I'm on Sotalol and Xarelto.

[SERVrider]

NHS England have recommended the autumn booster and the spring booster. For me that makes 7 vaccinations. The Birmingham University study showed that if you are male and on a BTK inhibitor you are unlikely to make many, if any, antibodies. On the other hand, you may make some and if they give you any immunity either to catching SARS-Cov2 or suffering from it badly then I reckon it's worth taking. Unlike Mr Bridgen MP's view, the vaccination won't be as drastically effective on you as ZyklonB was in the Nazi gas chambers which he has implied.

[bennevisplace in reply to SERVrider]

Three positives to mention.

The Birmingham Uni study concluded that most CLL patients got a T cell response equivalent to that of healthy controls.

T cell protection is broader and longer lasting than antibody protection, and multiple shots are likely to augment protection regardless of viral evolution.

Research has shown that long term treatment with Ibrutinib (and possibly also with other BTK inhibitors) reverses the T cell exhaustion typically seen in advanced CLL.

[AdamKeelan]

I’ve had 7 so far - and given that I get a reaction each time I’m reassured that my immune system is waking up a bit. ( It usually wipes me out for 24 hours). Personal choice of course but I’m willing to believe doctors who say it’s worth continuing having if you have CLL. Think of what the alternative might be if you have an even further reduced immunity without it. I’d sooner not find out but I’m sure there are CLL folk here who may have had Covid and can tell you what the experience is like. !

[Gsxjax]

Yes I have. I would rather be safe than sorry

[betmaxbaby]

Im sure big Pharm will tell you to jump on it. Ive had 2. Think that may be enough for me and im very high risk category. Too many young men tipped over from "heart attacks". Cant believe one thing the government tells us here. Good old USA, land of the corrupt swamp and Media.

[AR0613]

I had my 7th covid vaccine last week even though I have not had any response so any of the previous 6. ( I am tested for antibodies as part of my 3 month review here in the UK) .

I am on treatment - 4 years on I& V . Caught covid for the first time back in February and got through it with the help of paxlovid. I was tested for covid antibodies again in March. Nothing.

I’ve been advised to continue to have the vaccines- I assume it’s because my consultant believes there might be some benefit. Meanwhile I am fully out and about and making the most of life which feels wonderful after nearly 3 years of shielding!

Stay well.

[lexie]

I've had 2 covid vaccines, 2 boosters, 3 evushelds, 2 bivalent boosters and will not hesitate to get whatever is advised for fall.

I continue masking and with the extraordinarily poor air quality from the wildfires there is an uptick in mask wearing in my area, yay.