Don't forget your flu jab.: Hi everyone It's... - CLL Support

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Don't forget your flu jab.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Hi everyone

It's that time again. Your GP may be taking bookings for your annual flu jab. Time to get yourself jabbed.

Although CLL patients may not get the full protection from vaccines, it is recommended that we are vaccinated.

Influenza vaccine - is recommended annually before the influenza season.Check other vaccinations are up-to-date.

CLL patients are immune compromised and should not receive live vaccines therefor The shingles vaccine a live vaccine should not be given to CLL people..

PS thanks Brisol City Council for the image and the HU system picked the tags without me needing to edit them!!

25 Replies
HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

I forgot to mention Herd Immunity and how vaccinating those living under the same roof with healthy immune systems may prevent the introduction of the virus into your household.

We never know just how much protection our own vaccination may provide us Winter still seems a long while off but the kids and their mates are already coming down with bugs.

Neil posted some useful information about CLL and how it affects our immunity and herd immunity is discussed ii the thread.

I guess it's time to start twitching on the train again?


Mines booked for Thursday along with the wife.

Just updated this post after a change of heart, and thanks for all your posts everyone, and sorry I haven't replied to so many (need to give up the dreaded work)

So, managed to put my guilt aside and go for a flu jab after some discussion with the GP - first flu jab for me.

Background: I'm a generally healthy, mid 40's watch and wait (3 years) patient, with lymph count in the 90's now, that has rocketed a couple of times. So I've no idea yet when treatment might start, but open minded - I think treatment is coming. I do now consider this year my thermostat is starting to go wonky.

One thing that swung the decision to get jabbed for me was the opportunity to get the Pneumonia jab done at the same time, the protection lasts for 5 years, and I don't think I'll be watching and waiting that long. I got the Pneumovax2 version (understood they tend to give the Prevnar to infants - sorry there is a difference which I don't understand)

Aside: With familial experience of CLL, Pneumonia that is a very real threat in my mind, the flu I can't understand, never having experienced the proper stuff. I put the "man flu" to one side . . . :-)

Got the good work done at the GP, and they were aware when I turned up about avoiding live vaccines e.g. shingles, but I'm sure it's best to ask to help spread the word.

So I think Nick's advice is good, and thanks for sorting me out and clearing my thinking on this subject.



Cllcanada profile image
CllcanadaTop Poster CURE Hero

Not sure about the UK, but there are two flu shots in the U.S. and Canada, one is for 3 strains of influenza, the other is for 4 strains. You may want to consult your doctors as to which one they think you should get...

Also in the US a new vaccine made from caterpillars so people with egg allergies can use it, however, it is only approved for people under 50 years old... see FLUBLOK

Finally there is the super 4 dose vaccine, again see your doctor...

The nasal flu spray is LIVE VACCINE not for CLL, and kids using it may be infectious for up to two weeks...

Single use vaccines are preservative free, multiuser are not...

Nothing is ever simple in CLL!


MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to Cllcanada

It seems around here the 4 strain variety is what people have. I had asked about the super flu vaccine a couple of years and my hematologist recommended the regular one. Going to my doctor's office is such a hassle and I found out last year that my fabulous pharmacist offers them - single dose variety as well. Easiest jab I ever got. I guess I'll be heading his way this week. I used to get fairly bad reactions to any shots. Last year I had just a minor one, which I hope means that my immune system was mounting a little fight!

@Ernie, I learned it the hard way.

My season started two weeks ago with this seasons first infection and trip to the hospital for IV antibiotics.

Even though we also has a nice indian summer here in DK.

Unfortunately the flu shot starts in october here.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

The vaccine is in with Wales GP;s now. I called in today and am on the list for this coming Saturday. This was after a cancellation was found as the first available would have been second Saturday in October. not soon enough for me as I have a few train journeys ahead.

PaulaS profile image

We (hubbie and I) had our flu jabs done yesterday, here in Sheffield. Glad that's done. When I checked that shingles wasn't included, they said we weren't on the list for that, as we're under 70 years old. When I asked about pneumonia vaccs, they said I'd had one 5 years ago (I'd forgotten that), and it should last me for life. It was Pneumovax not Prevnar, so I may contact the GP later and ask re Prevnar.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin in reply to PaulaS

Thanks for the update Paula - yes the concern must be for the over 70 CLL patients that may have inadvertently been added to the shingles list.

MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to PaulaS

The Center for Disease Control in the US recommends a second dose of both pneumonia vaccines 5 years later. What is confusing is that the wording implies that maybe they mean every 5 years. I wish they'd get their act together.

PaulaS profile image
PaulaSVolunteer in reply to MsLockYourPosts

Right... thanks pkenn. I think I really do need to talk to my GP (not just the nurse), about having another Pneumovax, as it's been 5 years since my last one. And about having the Prevnar as well. I wish we could just leave/trust the medics to work everything out for us, but it seems not. I realise these vaccinations probably only give partial protection, but anything seems worth having.

Rogerb profile image
Rogerb in reply to PaulaS

The perceived wisdom in the USA is that Prevnar is preferred to Pneumovax for elderly CCllers (like me). However, my GP would only sign me up for the (much cheaper!) Pneumovax!

So I had the Prevnar privately, and then. 80 days later (min recommended interval). I had Pneumovax. Time will tell (maybe)... none of these vaccines is thought to be very effective ibn the elderly immuno-compromised, but, IMO, it's worth a try.... and it's only once per 5 years!

PaulaS profile image
PaulaSVolunteer in reply to Rogerb

Hi Rogerb,

There's been a lot more discussion on the Prevnar/Pneunovax issue more recently. See the link below.

In my case, my GP did eventually agree to give me Prevnar then Pneumovax (on NHS not privately). He was going to give them 4 weeks apart, until I told him it needed at least an 8 week gap (thanks again CLLCanada for telling me that).

My haemo consultant said he wished ALL his leukaemia patients could have both Prevnar and Pneumovax, but it was up to GPs to decide, as it was expensive. I find it hard to understand a system where a consultant can recommend something and a GP refuse to give it, because of cost. (I live in the UK).

Also, I believe the cost of Prevnar is about £49. It's not astronomical... The cost of treating Pneumonia would be much greater. (Yes I know none of the vaccines are as effective as we'd like them to be, especially later in our CLL journey, but surely every bit of help is worth it)

Anyway, I'm glad you did get the Prevnar in the end, Rogerb, even if you had to pay for it.


Although I had corresponded with my surgery about the shingles jab, they still sent me a letter advising I had it. On the plus side, at least there was a tick box questionaire asking if one had a weakened immune system, and advising not all folk should have it.

Now just have to wait until the 14th of October for the flu jab and try to avoid the bugs until then. Perhaps I can borrow ygtgo's diver suit. RE: CLLand Fatigue.

ygtgo profile image
ygtgo in reply to

..... Sorry Bubnjay ...... it's got a puncture ....... I only discovered it this morning when I was in the shower !

Oh no ! Do you think a bicycle tyre repair kit will do the job ? :-)

Oh I'd better get back on topic. Please remember all, stay as safe as you can, book your flu jab if you have'nt done it already.

Hope you are starting to feel a little better ygtgo.


Mine is booked for this Saturday 29th Sep Wife is booked in too.

I will check it is only Flu when I get there and no shingles.

The surgery were a bit reluctant to give it to my wife because she is under 60 and has no conditions but after speaking to the nurse and explaining I had CLL they said she could have it :-)


I had the pneumovax last Oct on the recommendation of my haematologist. I did as I was told despite CLL friends telling me that their doctors said it didn't work. I was not aware of the alternative Prevenar until the CLL support group meeting in Southampton this year. When approaching my GP recently I was told that Prevenar cost £40 as compared to a few pounds for pneumovax and the attitude seemed to be why should I expect the surgery to fund that.

Not sure what to do now and if it is possible to find out if I have any immunity or not as a result of the pneumovax and if not, if it is possible to access Prevenar privately here in the UK.

Has anyone else been faced with this dilemma and found a way through?

Good luck to all in avoiding all those nasty winter bugs and thank you CLL community for the warning about the combined shingles and flu vaccine, my surgery was not aware that they were being combined!

We do indeed have to take responsibility for our own health

Rogerb profile image
Rogerb in reply to

As I mentioned above, Prevnar IS much more expensive (here in Spain, it's about 76 Euros versus 11 for Pneumovax), so you can see why the NHS is reluctant to splash-out for Prevnar. Again, here, one can get Prevnar administered privately, but, if you have both, you must allow 80 days between the two. How effective? who's to say? ...see my previous comments. ... it's 'insurance', as quite a lot of elderly folk die from pneumonia..

Mine booked for Monday, not booked wife in yet. Maybe I'm being a bit too cautious. Decided to do one then the other in case we both had bad reactions (years of DR plNning in IT - dont update all your resources at same time). Interestingly no side effects for me last year but wife had very sore arm for several days!

Recepionist had no idea if it was combined vaccine, will check, but unlikely.

I had to go into surgery yesterday to pick up this months drug supply, so decided to get my wife booked in for the week after me. Receptionist did not want to book her in at first as she did not qualify on the official list of recipients (over 65, registered carers, immuno-suppressed and i forget the rest). I suggested she checked my wife's records for last year. Potential problem fixed.


HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

I had mine two days ago.

The most comfortable ever, no pain in my arm after? I hope that's good and not me being unresponsive? My Wife and daughters have theirs on the second Saturday this month - that is the closing date at our surgery in Wales.

I asked about accidental inclusion of immunecompromised into the shingles prograamme for the 70&79 age group. In Wales that is being handled by a separate clinic. But as usual Wales is feeling the shortfall in vaccine as England apparently has the stockpile and the prograamme has been delayed in Wales.

I received a letter from my GP's surgery saying they were doing Flu jabs on the 12th October . I have found out that this date is 5 months after my last dose of Rituximab as part of FCR. I have read that vaccinations should NOT be given 2 weeks before, during and up to 6 months after rituximab treatment. Should I still keep the appointment?

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

I believe the wording in Current UK Guidelines on the diagnosis, investigation and management of chronic lymphocytic leukaemia


"Failure to achieve protective antibody levels following seasonal and HINI influenza vaccination have been noted in patients with CLL and lymphomas vaccinated 2 weeks prior to, during or up to 6 months post-rituximab. (Pollyea et al, 2010; Yri et al, 2011).

As a novice I think this translates as the vaccination may be less effective. I would check with your consultant for recommendations.


I did check and the Senior Nurse Specialist phoned back and said it is o.k. to go ahead.

Getting the flu shot……….

…….. isn’t about you.......

I see lots of different responses, some are happy to get it. Others are unsure, worried about side effects. Others plain old refuse.

Plain old refusal isn’t an option for me, not only do I not want to get the flu, …………

………….this isn’t just about me……………

It’s not that I don’t know that there might be side effects, or that it might not work. I know that. But the side effects are usually mild (like some muscle soreness or feeling a bit sickly for a day or two), and given that the flu can’t be counted on to be mild, I’ll take whatever protection I can get. Especially because……………….

…………. this isn’t just about me.......

This year, there are some new options when it comes to the flu shot. There are nasal spray versions for children as well as injectable versions too. There is also a version made without any eggs at all for those with severe egg allergies.

In fact there are remarkably few people over the age of 6 months who would not benefit from a flu shot. People with a history of an allergic reaction to the flu shot itself, or with a history of Guillain-Barre Syndrome (if you haven’t heard of it, you likely haven’t had it) shouldn’t get it. The nasal spray is only recommended for healthy young people who don’t have close contact with someone with serious problems with their immune systems, such as CLL.

It’s important for everyone who can - to get something — because…..

…… it’s not just about you………..

One year I didn’t get the flu shot and I had a miserable case of the flu, but the bigger problem was that I gave it to everyone around me. My brother came to visit, and ended up in an emergency room a few days later — as did his wife a few days after that. It took quite a while before we were all well.

And the thing was, we were lucky. All of us were basically healthy people, which helped. We were lucky enough not to get any complications of flu, which can happen even to healthy people. But we might not have been so lucky — and it scares me to think of all the people we might have infected, or did infect.

See, that’s the thing: every year, some people get really sick or even die from the flu. The people most at risk are the very young, the very old and people with underlying diseases like asthma or problems with their immune systems. Some of those people, can’t get the flu shot — and even when they do, it doesn’t always work. When everyone around them gets a flu shot, it helps keep them safe. When someone around them gets the flu, it can put their life in danger.

That’s why it’s really important to get vaccinated.

But please, if you are thinking about not getting it, remember:

...........It’s not just about you.....................

………( Abridged from an article by Clair McCarthy MD )

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