Vaccinations

[RockyKNX]

Ive had Cll for 2.5 yrs and its progressing. I may need my first treatment in one year. From peoples experience is it important to get vaccinations that will reduce the risk of getting bad infections and which ones? Some articles i read say so. Also Ive commonly had diarrhea/irritable bowel and wondering if this common in CLL patients?

[Cammie]

Important to get flu jab each year also check with your med team about pneumonia jab.

It's important however to avoid live vaccines always ask when getting inoculated.

As far as IBS is concerned this may not be associated with cll check your diet to find what is causing the symptoms .

[RockyKNX in reply to Cammie]

Thanks Cammie!

[Cllcanada Top Poster CURE Hero]

Here is an overview, generally follow the HIV recommendations

cid.oxfordjournals.org/cont...

NO Shingles vaccine in CLL

[Bubnojay]

Hi Chris

We loudly beat the drum trying to make sure everyone knows CLL..... NO SHINGLES VACCINE. However It would be interesting to hear if any of our community have had shingles as a direct result of the vaccine.

Although my surgery is well aware of my CLL status I still had letters inviting me to come in for the vaccine. This should remind our community that have not got the message yet, that this is one important fact you need to look after for yourself.

Bubnjay1

[Cllcanada Top Poster CURE Hero in reply to Bubnojay]

I have known perhaps a dozen CLL patients who received the vaccine, but only one who had shingles immediately afterwards... and this was 8 years ago...

There are still doctors recommending CLL patients get the Zostavax vaccine, which by the way, is only about 52% effective in a healthy 50-60 year old population...

Finally Merck has only recently updated their website and handouts to reflect the fact it should not be used in blood cancer patients... or those with leukemia and/or lymphoma, on treatment etc... it took what 8 years!

Unbelieveable

~chris

[PaulaS Volunteer]

Hi Rocky,

I thought I’d share my experiences with vaccs, because at first my GP was reluctant to give some of them, but later he did and they worked very well.

It’s sadly true that many folk with CLL don’t get good responses to vaccs, especially as the disease “progresses”. However, responses are unpredictable, and seeing as infections are the biggest killers of CLL patients – especially pneumonia, it seems worth doing all we can to protect ourselves.

It’s better to get the vaccs done sooner rather than later, because as our disease progresses, we get weaker responses to them. However, having said that, I got mine at quite an advanced stage of my disease, yet still got very good responses – including for Pneumonia. (This was shown by blood tests later, that checked the levels of antibodies formed). There are many strains of Pneumonia, and the vaccs don’t protect against all strains. But when I was in hospital last autumn and was at risk of pneumonia, I did NOT get it (though I did get another chest infection).

So, if your doctors are reluctant to give you the vaccs, don’t give up. My GP was initially reluctant to give me the Prevnar (one of the Pneumonia vaccs). But I printed out some official recommendations so he checked it out and then agreed. You might find it helpful to print out similar recommendations. Chris has given a link to very comprehensive and detailed guidelines on the subject. If you think a shorter article might be more appropriate to print out for your doctor, then look at this one…

cdc.gov/vaccines/schedules/...

Scroll down to the second chart, “2016 Recommended Immunizations for Adults: By Health Condition”. As CLLers, we all have weakened immune systems, so for us, the chart’s advice seems to boil down to:

1) Annual vacc for flu.

2) Two pneumonia vaccs - first PCV 13 (also known as Prevnar 13), then at least 8 weeks later - PPSV23 (also called Pneumovax 23)

3) Haemophilus influenzae type B (HIb). This is different from the annual flu vacc.

4) Consider Meningococcol vaccs. There are different vaccs for different strains. As soon as I had my spleen removed, the docs were very quick to give me vaccs for MenC and MenB, followed by boosters, without my asking.

5) Consider boosters for tetanus/diptheria/pertussis (whooping cough), if it's been over 10 years since previous vaccs for these. (I was given all these three in one jab).

6) Consider Hepatitis A and Hepatitis B (I didn’t have those myself, but it might be worth asking about them).

The first three on that list are those that are most commonly recommended by CLL specialists. The others are also worth considering – you can discuss these with your haematologist. For people who are in the middle of treatment, recommendations may be different. I’ve just noticed that HPV is also in that chart. I’m not sure about that - didn’t have it myself, but you can always ask about it.

It's important to make sure those close to you also have the flu vaccine, as the most likely source of flu transmission is people close to you. They will respond to a flu jab better than you will, so they are protecting you by having it…” (In the UK, spouses, partners and carers are entitled to have flu jabs on the NHS.)

Wishing you all the best on your CLL journey,

Best wishes,

Paula

[RockyKNX in reply to PaulaS]

Thanks so much Paula for that very in depth discussion of the topic of vaccinations. I appreciate that very much. Its more info I can take to my GP who knows very little about CLL.