FLU VACCINE

[Marisa]

I am in the UK on Venetoclax and have just spent 5 days in hospital with COVID. Is it safe to have the flu vaccine and is it hit or miss whether the vaccine is actually for the strain of flu which is going to be around this winter

[cajunjeff]

My general understanding is that folks with cll are encouraged to take their annual flu shots. New varieties of flu shots are developed each year to best match up against anticipated flu strains.

There is no guarantee that a flu shot will protect anyone from whatever the flu-de-jour is in a given flu season. Those of us with cll are at a greater risk of the flu vaccine not working for any flu strain because as a group, we have sub-optimal responses to most all vaccines. Based upon the experience with covid vaccines, it’s reasonable to suspect that those of us with cll who are currently treating our cll are even more less likely to fully benefit from the flu vaccine.

Like any other large group of people, there are a number of people with cll who distrust all vaccines and who will not take flu vaccines. Their lives, their bodies I say. It’s a choice. In general though, people with cll who do not take vaccines are doing so against their doctors advice.

Even though for those of us with cll who are thought to have suboptimal responses to flu vaccines, a “suboptimal” response can be better than no protection at all. Our Cll doctors evaluate for us the risk of side effects from a vaccine vs the risk of a bad case of flu that might have been avoided or made less bad by a vaccine. A serious case of the flu can be fatal for those seriously immunocompromised from our cll and have zero vaccine protection.

All of my comments are general comments and not meant to be medical advice. I think before taking any vaccine, we should each consult with our doctors, as there very well might be a particular reason a particular vaccine is not recommended for a certain person. A doctor might also want to suspend cll meds the week of a vaccination to give it a better chance to work. Coincidentally I have recently communicated with my cll doctor through the patient portal to confirm she recommends I take a flu shot and covid booster, and to see if she wants me to suspend my calquence the week of my vaccines. I hope to hear back today.

[Marisa in reply to cajunjeff]

thank you. Will try and get hold of my hospital doctor in the first instance. Thank you for the advice.

[Sanders9]

Sorry to hear Covid put you in hospital. This is one of my biggest fears for my husband who has CLL. I hope you are better now

[Marisa in reply to Sanders9]

Yes. Had very high temperature of 39 degrees and was given antibiotics and fluids etc. fortunately, I didn’t require oxygen or anything like that. Although in a separate room, the nurses precautions with me went out of the window. No masks, gloves or gowns! Came home with a five day course of Paxlovid. Everything ok now.

[Sanders9 in reply to Marisa]

Horrendous that the nursing staff didn't wear masks with you having Covid. No wonder people are catching Covid in hospital. Glad you are better and back home

[CLLerinOz Administrator Volunteer]

I've not seen much advice leading up to this year's flu season about how long to wait after having COVID-19 before getting your flu vaccine. Last year, the advice for immunocompetent people who were recovering from COVID-19 was to wait until they felt fully recovered, which was about 10 to 14 days, before getting their flu vaccine. For the immunocompromised, the advice was to wait until they had no moderate or severe COVID-19 symptoms and had cleared their isolation period. covid19treatmentguidelines....

That's where it gets a little tricky. In a reply to a recent post about how long you should isolate, I shared the still current CDC recommendation that those who are immunocompromised should isolate at least 20 days, regardless of severity. healthunlocked.com/cllsuppo...

Given a strong response to the flu vaccine could take up to two weeks, that means that someone contracting COVID-19 just ahead of a flu wave might have to delay their flu vaccination until there was quite a bit of virus circulating in their community.

On top of that, as an immunocompromised person, your response to the flu vaccine, like other vaccines, might not be as strong as someone who is immunocompetent although, as cajunjeff explained having some protection is much better than not having any.

Encouragingly, infection control precautions like mask wearing indoors and in crowded outdoor public places, good indoor ventilation and air quality, social distancing and good hygiene can add an extra layer of protection, especially during the winter months when some viruses like the flu tend to be more prevalent.

It's good to hear you're home again after your unwelcome hospitalisation. I hope you continue to improve so you can get your flu vaccine soon.

CLLerinOz

[Marisa in reply to CLLerinOz]

Thank you for this info. I have tended to avoid the flu vaccine mainly because I experience quite a reaction to it and because my husband tells me that it is not really effective against the virus because flu viruses are so different yearly.

[Livingwith67 in reply to Marisa]

I find I react to the vaccines a lot too and have a similar view point as your husband. I think you know your own body better than anyone else.

Sorry to hear you were in hospital with covid, can I ask if your on current treatment for the CLL?

[Marisa in reply to Livingwith67]

Yes. I started Rituximab last June I think and then went on to Venetoclax. I have another 10 months of these pills to take

[Livingwith67 in reply to Marisa]

Thank you, I’m on venetoclax too and also have covid, I was wondering if you had to stop the venetoclax whilst recovering?

[AussieNeil Administrator in reply to Livingwith67]

If you have been prescribed Paxlovid, then you may need to stop or reduce the dose of some medications. Drugs.com lists strong interactions.

Neil

[Marisa in reply to Livingwith67]

When I was in hospital receiving treatment , Venetoclax was stopped, then when sent home with Paxlovid was told I could restart V which I did the next day. They also told me I had to,check my Levothyroxine levels as they could be reduced,, and am awaiting a blood form, which still has not arrived.

[Livingwith67 in reply to Marisa]

I was prescribed paxlovid but pharmacy wouldn’t give it to me because of interactions with other stuff, they initially told me to stop venetoclax to take it. Such confusing information. I’ve not stopped the venetoclax as I can’t get an answer for getting the paxlovid and now it’s most likely too late to have it anyway. I’m starting to feel much brighter too and I hope you are feeling much better too now?

[Marisa in reply to Livingwith67]

Sorry I think it must be my age, I think I started retaking Venetoclax after I had finished Paxlovid. Sorry for confusion. Am loads better and up and about doing stuff but my repetitive strain injury from over 25 years ago has reared its ugly head and is causing me problems.

[Livingwith67 in reply to Marisa]

Sorry to hear that, covid this time round seems to be hitting people weak spots too more harshly, hopefully things will tight themselves soon though for you

[Marisa in reply to Livingwith67]

Thank you. I seem to recover from things very quickly a/nd consider my health very good but the RSI is extremely painful right now, so have to be very careful

[CLLerinOz Administrator Volunteer in reply to Marisa]

Your husband is correct that the flu virus can change from year to year but the vaccines are also adapted each year to take this into account.

"The flu virus constantly changes, so different strains circulate yearly. The World Health Organization monitors the virus throughout the world and advises which 3 or 4 strains should be covered by an annual flu vaccine. Flu vaccination is offered annually because the previous year's vaccine may not provide protection against the strains that circulate in a new season and because immunity needs to be boosted each year even for the same strain." vaccineknowledge.ox.ac.uk/f...

The Australian health advice about flu vaccination explains that "Because the vaccine is not effective in absolutely every case, some people may still catch the virus after having the flu shot. But the risk of illness is still reduced.

Although most people who get the flu recover without lasting effects, the flu can be very serious in some people and may require hospitalisation. In some cases, it can even be fatal. It’s not possible to predict who will be severely affected.

Vaccination against the flu both reduces your chances of getting it and the severity of the symptoms if you do. So it’s still important to have the shot." healthdirect.gov.au/flu-vac...

You should discuss your previous reaction issues with your doctor to determine whether they might impact your suitability for future flu vaccination.

CLLerinOz

[Moma64 in reply to Marisa]

I haven't been getting the flu shot until this past year. I had a not so nice reaction to it, as well so I don't think I'll do that again. What I have gotten is the pneumonia shot.....I got thru Covid and a form of flu a couple of years ago. Thankfully, neither settled in my lungs and chest, but I was sick enough to realize that had I also contracted pneumonia, I would have had a difficult time recovering. Hopefully, the pneumonia shot will do the trick for me.

[Marisa in reply to Moma64]

I have had pneumonia and recovered well. Haven’t considered a pneumonia shot though. Will definitely think about that.

[mrsjsmith in reply to Marisa]

Marisa I am very surprised that your haematology consultant hasn’t advised you on the various vaccines that are recommended, ie. both Pneumonia vaccines and yearly flu vaccines. My CNS regularly checks these with me.

Colette

[Marisa in reply to mrsjsmith]

Although on Venetoclax, I have monthly telephone consultations with haematologist consultant and he has never mentioned it. I think it is up to me to ask!

[mrsjsmith in reply to Marisa]

Sorry I think it’s something your consultant/CNS should be checking with you. It’s also advised to check vaccinations before starting treatment.

Colette

[Marisa in reply to mrsjsmith]

Well, that certainly didn’t happen.!

[Poodle2]

So sorry to hear you ended up in the hospital but glad to hear you seem to be getting better. I still fear covid. Have you had it before and are you vaccinated? As for the flu vaccine. I would defo have it. I was on O+V last year (finished in June 2023). I had my flu jab in October and caught flu in January. I did recover quite quickly and didn't really struggle with the virus, my kids (vaccinated) were even better, husband (unvaccinated) was really unwell with fevers for 10 days (he agreed he would always have the jab in the future). I did end up needing antibiotics two weeks later as my runny nose turned into a sinus infection but I was also neutropenic at that point so probably a mixture of everything. I was glad I had the jab as I wasn't too sick and I didn't need to be hospitalised.

I would probably wait at least 4 weeks after you fully recover and test negative. You can have the jab in October, that should still be in time for the flu season.

Wishing you a speedy recovery.

Petra ❤️

[Marisa in reply to Poodle2]

Hi Poodle

this is the first time that I have had Covid. I didn’t have the last vaccine because the doctors didn’t want me to have it when I was having treatment with Venetoclax. I think there may have been a bit of misunderstanding between us. Anyway, my husband and I went to a Christian weeklong festival in Kent and Covid was obviously doing the rounds. So by the time I came back, my husband had got it and then two or three Days later I noticed my temperature was going up and was beginning to feel very unwell , so reluctantly took myself off to hospital. I worry about my husband because he has diabetes and is very susceptible to getting ill. It turns out that a few of my church friends that went to this festival also got it and even worsethe following second week of the festival was much much worse with many more people falling ill. I feel I got off very lightly with COVID and I praise my God in heaven for that. I understand that We are eligible for another vaccine in October which I think is being rolled out. I tested negative 3 days after I came out of hospital.

[Poodle2 in reply to Marisa]

I think when you have it first, it's the worst so hopefully you will be covid free for the next few years again...you just want to live normal life, it comes with risks...what can we do, we cannot just sit at home. I'm really glad you are already testing negative. I would wait for a month and have the flu vaccine then. Even if you react to the jab, it's worth having it. I didn't expect I would mount much of a response due to being on O+V but it did help. As for covid vaccines - I was told not to have it at this point as due to the treatment I was on, I wouldn't have any response - this came from my immunologist. I have had covid twice and three jabs. All the best to you.

[skipro]

I'm not sure but hoping you recovered from COVID