Vaccinations post CLL diagnosis

FormerMember over 5 years ago

3 replies
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I was diagnosed with CLL in May and am now on watch and wait. I was given a booklet on CLL produced by Leukaemia Care. It stated "as soon as you are diagnosed with CLL you should receive vaccinations against the common chest bacteria pneumococcus and haemophilus influenza B and the meningitis causing bacteria meningococcus and the annual flu jab" I mentioned this to the specialist nurse at my last appointment and it she didn't seem to know what I was talking about! I did have a "routine" pneumonia jab last Nov which I asked for as I was over 65, so I may already be covered. Has anyone encountered difficulties in obtaining the recommended vaccinations or know what the routine pneumonia jab covers?

Tortola6 over 5 years ago

Welcome to the sad world of the total lack of knowledge about how doctors treat CLL…

There are TWO pneumonia vaccines and it is important that you take the correct ones in the correct order.. Most general practice doctors are NOT aware of the requirements for a CLL patient as they just do not see many of them during their routine work. I had to totally educate the staff in my GP’s office..

FIRSTLY…..VERY VERY IMPORTANT… With CLL it is important that you DO NOT accept the regular Shingles vaccination offered. This is a live vaccine and can cause you to get shingles since our immune system is not fully functional. ( There is a new shingles vaccine being tested on CLL patients called Shingrex, and hopefully available shortly. Some CLL patients have already tried it and no problems, but it has not yet been certified )

Suggest you google HealthUnlocked and join the knowledgeable CLL community where you will find much information that will steer you in the right direction. The ‘ Pinned Pages ‘ on the website have pages for the newly diagnosed and information about the safe vaccines we should take and the one’s we must avoid.

Come back here if you need more help, I have been active on the CLL forums since 2005 when I was first diagnosed.

Dick

FormerMember over 5 years ago in reply to Tortola6

Thanks for your very helpful reply regarding vaccinations and about where I can access more information. In 2005 I had breast cancer with surgery, chemo and radiotherapy which took over my life for a year. There was lots of information relevant to that which I found and advice forthcoming from professionals. With CLL I decided I wasn't going to let it take over my life as I needed to just get on with living. However on a practical level it pays to be a step ahead of the game and ask the right questions.

I'll have a look at HealthUnlocked which I hadn't heard of. Encouraging to know you are 14 years post diagnosis, hope you are well.

My next quest will be re travel insurance. My husband is just 10years clear of a bladder cancer diagnosis, so we thought, great reasonable travel insurance from now on, when CLL reared it's ugly head!