flu vacsinations

[brad7]

I would very much like to know if seasons flu vacsinations are safe for w&w CLLs

[AussieNeil Administrator]

Vaccinations are recommended by medical professionals on the basis that the risk for the population associated with the vaccination is (generally far) less than that associated with getting the disease. People who should not have vaccinations because the risk/reward ratio is not in their favour are generally spelt out in the official information regarding the particular vaccination.

As far as I know, flu vaccinations are as safe for us as for the rest of the population. In Australia, the free government vaccinations are specifically recommended for people with compromised immune systems - including when caused by leukaemia. You may even have less of a reaction than usual due to your immune system not working that well because of the CLL. I've had one every year since diagnosis and only notice some tenderness in my upper arm (usually when I roll on it at night), for about a week after the vaccination. Thankfully, I haven't had the flu since diagnosis and that's what I really dread. Your risk of secondary infections - possibly leading to death and a much longer recovery than what you had before CLL are very real risks if you contract the flu.

Neil

[Cllcanada Top Poster CURE Hero]

Yes, annual influenza injections are usually recommended, but NOT the nasal spray. It is a live vaccine.

There is also a high dose version, but you need to discuss this with your CLL doctor first.

~chris

[Myrddin]

Certainly worth having for what help it might give - follow link for more on vaccinations. cllsupport.org.uk/cll-sll/l...

[alexmcg48]

I was basically told to get one by my specialist Dr when I was first diagnosed back in Oct 2014 & told to keep getting them from here on in, although from subsequent info it appears the one I had wasn't particularly effect, so maybe a good idea to discuss with your Dr before actually having it.

[AussieNeil Administrator in reply to alexmcg48]

The influenza virus comes in different strains and is well known for changing its outward appearance by which our immune system recognises it. Each year an educated guess is made on what varieties are likely to be circulating among the community in the coming flu season and the vaccine is made accordingly. It takes time to manufacture, test and distribute the vaccine, by which time the strains circulating may have changed, making the vaccine less effective. That's what happened last year. The Australian government provided flu vaccine was delayed a month this year, because they decided that they needed to change the mix to better reflect the likely circulating strains. There are already concerns that we are in for a very bad year - even worse than last year, which was the worst for many years where I live. The free government provided vaccine covers 3 of the likely strains but you can also pay for an alternative that covers 4 strains.

This plot shows flu related search queries for Australia which correlates well with the incidence of flu. You can see that it is trending above the past 6 years results:

google.org/flutrends/au/#AU

Consider this analogy of how our immune system works and how different vaccines work. You're a tribesman trying to teach your young child to avoid leopards, so you can:

a) show your child a leopard skin - the equivalent of us having vaccines that contain parts of the 'viral coat' that we want our immune systems to recognise, like the flu vaccine

b) Show your child an old leopard in a cage - the equivalent of being vaccinated with an attenuated (live) virus. Get too close to the cage and the leopard can still lash out.

c) Let your child play in the jungle without warning your child to be on the lookout for leopards - going unvaccinated

Leopards don't change their spots, so they say, but unfortunately, cold and flu viruses do.

Neil

[shezsam]

Yes Neil 3 new strains in the Fluvax are California, Phuket & Switzerland.

Scheryl

[Cllcanada Top Poster CURE Hero]

It is important to understand that Northern and Southern hemisphere vaccines are usually different

Here is the Southern 2015...

biocsl.com.au/docs/347/764/...

[HappyDave]

I had my first flu jab last October. I never even had a cold over winter. My wife contracted flu at Christmas and was quite poorly. I was waiting my turn at being infected as the flu vaccine in the UK was not that accurate. I was surprised that I did not become infected. From my perspective it worked. I also had the pneumonia jab as well. It seems to have protected me.

[PaulaS Volunteer in reply to HappyDave]

Sorry to hear that your wife had a bad bout of flu last Christmas, HappyDave, though it was good that you never caught it, maybe due to your flu jab.

Had your wife had the flu jab too? Spouses/partners/carers of immuno-compromsed people can also be given flu jabs on the NHS in the UK. They will get more protection from the jab than we CLLers do (as their immune systems work better), so they will be less likely to catch flu and pass it on to us.

My hubby always gets the flu jab, as well as me. He's over 60 now so I think he could get it anyway. But a few years ago when he was under 60, he was given it on the basis of being married to me! He had to ask though - it wasn't automatically offered.

I realise that flu jabs are different every year, and vary in their effectiveness, especially for folk with CLL. But I always reckon it's best to try and get as much protection as we can.

Best wishes,

Paula

[HappyDave in reply to PaulaS]

Paula

Thanks for your reply.

My wife did not have the jab.

I am afraid the relationship with our GPs are not good.

Getting an appointment is virtually impossible. The last two times I have needed to see the Dr I have been seen by the triage nurse with little joy. On each occasion she did not even know that I had CLL. The NHS is under huge pressure and I do not blame the staff and doctors. The blame lies at the top of government in my opinion.

I no longer use my GP's surgery and there is little alternative choice locally. I pick up my prescriptions and see the nurses.

At the Oncology unit things are not much better I have been seen by four different doctors over two and a half years. Each has said different and contradictory things.

Despite my moral objections I think I may have to pay to see a private consultant to get an authoritative version of where I am.

I do hope things will change but I am not optimistic.

Hope things are better where you live?

Regards

Dave.

[PaulaS Volunteer in reply to HappyDave]

Hi Dave,

The setup with your health care sounds extremely inadequate – especially with your GPs. I would not be a “Happy Dave” at all, in that situation. At my GP surgery, there is often a week or two's wait for a set appointment, but there are “drop-ins” twice a week, where anyone can turn up and be seen eventually (though we may have to wait an hour or so). If we say something is urgent, then we can usually be seen on the day that we phone.

If you can’t get an appointment with your GP when you need one, and the triage nurses give no joy, then it sounds like you need to find another GP. You say you’re not optimistic about things changing, so you probably need to do the changing yourself.

Re the oncology unit, it’s not unusual to see 4 different doctors over 2 years, and to be told different and contradictory things. The same has happened to me. There are so many different opinions amongst CLL doctors, and treatments are changing all the time. Also, because CLL is such an unpredictable disease, it can be very hard for any doctor to give you an “authoritative version” of where you are, or how things will progress.

However, if you don’t have faith in your Oncologists, you’d be better off getting a referral to a CLL specialist – especially as you mentioned a few months ago, that you may need treatment soon, due to falling platelet counts. You should be able to do that on the NHS, rather than paying to see someone privately.

I live in Sheffield and have had good care here. But because I wanted to get onto a trial with the new non-chemo treatments (rather than have FCR), my haematologist has referred me (still on the NHS), to Prof Peter Hillmen in Leeds. I am very happy about this, so I can at least see what options I might have. There are lists somewhere on this site, of CLL specialists in the UK, so you can hopefully find one near you.

I do hope things work out better for you soon. Let us know how you get on.

Best wishes,

Paula

[HappyDave in reply to HappyDave]

Paula

Thanks for your email and advice.

I will try and contact the Oncology Dept and seek a referral onwards.

In respect to my GP set up there is little I can do. I have checked with people who use other local surgeries and the situation is similar. Primary care is pretty poor here and on speaking to a locally based paramedic he claimed to be picking up lots of work that should be dealt with by GPs.

Regards

Dave