Flu Vaccine: Hi dears.. I am CLL and on... - CLL Support

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Flu Vaccine

AshGS
AshGS

Hi dears.. I am CLL and on Ibrutinib now for 4 months. All my Drs have advised that I should tale the Flu vaccine. Yet all the people I know - who are not CLL - had some fever and much fatigue for at least couple of days.

So I am afraid that it would affect me badly given my low immunity.

What are your views and which brand you would recommend (as I am assuming that maybe brands would have different effects)

Thanks in advance!

Cheers

34 Replies
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I had the flu vaccine and had no side effects at all and I was worried like you as I had a really bad reaction to a Prevnar13 vaccine just a month before that. I think it's probably very individual.

I heard one professor talking about vaccines on Question Time last week and he said that people always worry about the side effects of vaccines and they seem to forget what the actual disease can do to us. A bad reaction to a vaccine is still nothing compared to the disease itself. Don't worry and have it done.

AshGS
AshGS in reply to Poodle2

Thanks dear :) Will do

Stay safe!

AnneHill
AnneHill in reply to AshGS

I have had flu jabs for years and never had a reaction. Makes my arm a bit tender so is best on the arm that you dont lye on in bed.Like you I take ibrutinib and I have introvenus immunaglobulin every 4 weeks for low immunity. You also need pneumonia jabs. Anne uk

I had the flu jab around 2 weeks ago, no side effects or symptoms...Go for it x

No side effects here and I agree with Poodle. I've had the flu and I don't want it again. Laid up for 2 weeks with headache, body aches, and fever . Thankfully it never went into pneumonia. Get the shot and keep yourself safe! And the shot does not cause the flu!! Make sure to get the non-live vaccine.

Natchez
Natchez in reply to albie58

Amen! If you’ve ever had a true influenza you NEVER want to go through that again!

albie58
albie58 in reply to Natchez

Natchez...I couldn't believe how sick I was!! Never, ever do I want that experience again!! Ill take a few side effects from the shot VS being laid up for almost 2 weeks!!

Natchez
Natchez in reply to albie58

Same and I was only about 25 or 26 yrs old at the time. I remember getting short of breath walking down my basement steps to put a load of laundry in! I was off work 2 weeks as well! Never again!

I got the flu shot and I get any other shots my Dr. recommends as long as it's not a live one. So far I have had no problems with any vaccines. I have not had the Shringrix shot yet as the verdict is still out on it for CLL folks and My Onc/Heam. hasn't said to get it as of yet.

janvog
janvog in reply to rcusher

I got the first of the two Shingrix shots. Very little increase in temperature and arm pain for two days. It is to be 90% effective. I had shingles: It is terrible and can become very dangerous. It left me with "post herpetic neuralgia" on the right side: Irritated skin nerves.

albie58
albie58 in reply to rcusher

I attached a link to recent research about the Shingrix vaccine.

urmc.rochester.edu/news/sto...

They are not Ibrutinib symptoms but they are a couple of covid symptoms, get a test

I have had flu shots twice since starting ibrutinib with no problem other than some mild, transient pain at the injection site. Getting the flu with an impaired immune system would be way worse than any short term reaction to the flu shot to me.

I have had four flu shots since my CLL diagnosis. The first two caused nothing more than a slightly sore arm for a day or so, the last two have had a little more in the way of side effects. Last year a sore arm and a couple of days of very slight headache and feeling a little warm, this year sore arm leading to a bruise, feeling warm and a little tired for a couple of days and some node discomfort. I take comfort from the fact that the slight side effects probably indicate an immune response. I had flu years ago when I was young and healthy and it was grim.

Horatio2
Horatio2 in reply to Ghounds

Ghounds, it is ironic that you mention the bruising after your shot. The last pneumonia and Shingrix shot I received both caused bruising. Is that something that is common with us CLLers? I'm used to a sore arm, but the bruising made me worried.

Ghounds
Ghounds in reply to Horatio2

I don't know, this is the first time I have had a bruise. I put it down to the nurse seemingly being in a hurry and pretty much just stabbing me.

Pippasue
Pippasue in reply to Ghounds

Hello. I have never gotten flu vaccines and am thinking of doing so. Did you get flu vaccines in your lifetime prior to your diagnosis? I was dx 2 years ago and am in W&W. I am curious if your numbers have stayed stable from diagnosis to now? I am so nervous to introduce anything new to my body that I wasn't doing before because I fear it could fast-track my time to treatment. No valid reason to feel that way other than worry. Any info is appreciated.

janvog
janvog in reply to Pippasue

Get all shots that your doctors recommend ! Their decisions are based on large scale evidence.

Ghounds
Ghounds in reply to Pippasue

Hello Pippasue. No, I only had the usual childhood immunisations and a tetanus booster prior to diagnosis. The consultant told me to get a flu shot so I did. I am not a medical professional but I can't see how a vaccine could accelerate your time to treatment. Together with my second flu shot I also had one for pneumonia in the other arm! No side effect other than a little soreness at the site.

I have had flu vaccine twice since being diagnosed. The only downside was that I couldn't lie on the side that it was done for 24 hours.

Hi, I’ve been on ibrutinib for almost 6 years and have always had the flu vaccination with absolutely no side effects. The flu can be much worse for us with CLL. Stay Safe xx

I am currently undergoing Venetoclax +Rituximab treatment. I had my flue jab the day after an infusion of Rituximab and only suffered minor side effects. My consultant ok’d having the jab.

I had the flu jab at the beginning of September and was fine. I had flu last year and was dangerously ill in hospital I don’t want that again.

My consultant said it was essential that I have the flu vaccine. Flu vaccines aren't live so you can't get flu from them. I have CLL and neutropenia and had no side effects. X

Hi there,Understandably concerned, I was as well as Im also allergic to eggs. I bit the bullet and ordered the cell based vaccine Flucelvax Tetra - which I had in October afterwards my arm obviously was slightly sore and for about 10 days on and off I felt as as if I had ‘hay fever’ symptoms - and around the the 5th day after I felt a bit lethargic for a couple of days - I took my temperature regularly and that was ok, but nothing other than that.

Ive been on Ibrutinib for 18 months and figured it was worth having against the reality of how flu can be.

I hope this is helpful but remember we are all different how we react to things and wish you well.

Stay safe

Brenda

AshGS
AshGS in reply to retired46

Thanks Brenda.. Stay safe!

Hello AshGS

I suspect that if you talked to your CLL doctor, doctor would recommend that you have flu shot. CLL is a cancer of the immune system. 50% of CLL patients die from pneumonia. Blessings.

I also take Ibrutinib/Imbruvica and I, personally, willnot be taking any flu, pneumonia, COVID-19, or other shots. That's because I have thesame concerns you have—concerns which are well founded, I might add. Good luck to you in making your decision.

janvog
janvog in reply to Pogee

Forgive me: You need a serious conservation with a physician about the need for all those inoculations !

AshGS
AshGS in reply to Pogee

Pogee.. I see your point; yet I tend to disagree to your inclination as after seeing the responses of our fellows, I believe we should go at least for the flu and pneumonia (I have taken pneumonia 3 years ago and it is once a life time). For the COVID.. well.. a ?Best of luck.. and pls go for the pneumonia at least!

Cheers.. Stay safe

I had the flu shot in October and was very nervous. I normally have had bad reactions with a ton of swelling that lasted for a couple weeks and sometimes traveled down my arm (once almost to my wrist!) I've been on Ibrutinib for 4 months (3 months when I got the shot) and I had almost no reaction. That hasn't happened in years. Don't know if it's because of Ibrutinib but was really relieved!

Flu vaccines are killed or inactive vaccines - they cannot cause the flu. If you’ve heard people say they got the flu post vaccine, it’s likely they had an exposure prior to it.

CLL weakens your immune system inherently, making it more difficult to fight off the flu or a secondary pneumonia, a common cause of death for CLL patients and flu sufferers.

Additionally, in this time of CO-VID, you DO NOT want to be in a hospital with a flu pneumonia and conversely don’t want to be further clogging up the hospitals with a largely preventable illness.

Do yourself a big favor and get a flu shot today.

💜😷

Like you I have CLL and take IMBRUVICA and my hematologist wants me to get the annual flu shot every year. I have never a reaction, or just too slight to notice. I now also got the SHINGRIX shot to avoid shingles: Only sore arm and a very slight increase in temperature for two days. I am 86.

had the flu & Pneumonia shots at the same time with no side effects at all and I was worried more than you but things was great 👍🏻

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