Vaccinations - advisability of having Shingles vaccination at stage 0?

[efun]

Just diagnosed with cll. I'm 55, female. In Jan. blood tests showed WBC 14. Showed the same in July 2015 so was sent to hematologist. Feel great. No other symptoms. Confirmed by flow cytometry that I have cll. White blood count is 14.4. Lymphocyte 7.5, CD38 negative. Hematoligist said it was smoldering cll. He said I should get the pneumonia vaccine. I asked him about the shingles vaccine if it was safe and he said it was safe at the levels that I have. Only info I can find is DONT get shingles vaccine if you have CLL. Can't get into see hematologist for three months to ask him more questions on the shingles vacinne. Does anyone have any info for me?

[AussieNeil Partner Administrator]

Hi efun,

I'm not medically trained, but Rick Furman, MD and CLL specialist based in New York posted the following to the CLL groups.io forum on Thursday Sep 18, 2014 ...."Since the varicella (Shingles - Neil) vaccine is a live vaccine, it is recommended that immunocompromised patients (all CLL patients), not receive the vaccine. With that being said, I have many patients who have received the vaccine without any complications, so the risk is likely low. The issue to remember though, is that we have no data that there is any benefit from the vaccine in CLL patients.

The varicella vaccine overall decreases the risk of shingles by about 50%, with the benefit being seen within 10 years of the vaccine's administration. There is also a reduction in the severity of shingles and the risk of post-herpetic neuralgia.

The best means for preventing shingles is anti-viral prophylaxis (acyclovir, valacyclovir, famciclovir). These are almost 100% effective."

By the way, I've changed your title so that others can easily find what must be a common question; I hope you don't mind.

Neil

[efun in reply to AussieNeil]

Thank you for the info Neil and also for changing the title. Although I spend hours surfing the Web for info, news, I have never posted on a blog. Kinda new at this. My hematologist basically told me to goggle CLL stage 0 on the web. Didn't really tell me a whole lot about it. He told me to remember the word CHRONIC. Go home. Not to worry. Might never need treatment etc. etc. Come back in six months. Easier said than done.

[PaulaS Volunteer in reply to efun]

Hi again, efun. I just saw your reply to Neil... So this is the first time you've posted... Good on yer, for getting started...

I don't think it was very helpful of your doctor to tell you to Google CLL Stage 0. All sorts of out-of-date (and wrong) info pops up on Google. It can be very offputting and confusing. And as you say, it's very easy for your doctor to say "go home and don't worry". But it's not so easy in practice...

Until I found this site, I had never joined an online group before and wasn’t sure what to expect. However, I was overwhelmed by the kindly support and encouragement of folk here. They answered my questions (usually very promptly), supplied all sorts of information, and are very understanding of the ups and downs that CLLers go through. I found it very reassuring.

I see that you are newly diagnosed. A few months ago I wrote three posts specially for newly diagnosed folk, that you might find helpful. They are collections of points that I’ve picked up from other people here, and from my own experiences.

I was prompted to write them, because I noticed when people are first diagnosed, they are usually NOT told about simple practical things that can do, to improve their prospects on the CLL journey.

Yet there ARE things we can do – things to improve our journey with CLL. I'm not talking about the complex medical stuff, just simple, do-able stuff. After I wrote the first post, many people mentioned points of their own, which I have added to my lists. So, the lists became quite long.. But I hope you'll find something there that's relevant to your situation.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Do feel free to ask any more questions.. And let us know how you get on, as you continue on your journey.

Wishing you well,

Paula

[efun in reply to PaulaS]

Thank you for taking time to reply to me. I feel a little more at ease after seeing all the support and great info from this online group. I'm feeling great and will just take it one day at a time.

Thanks again Everyone!😀

[Newcastle1962 in reply to efun]

I have just read your blog. I have recently been diagnosed. Age 54 same story told nothing w and w and told to go home not to worry and think about the word cronic. I have looked at this site and asked my Gp for flu vacine but no mention of any other. Perhaps i will ask for the pneuomonia vaccine.

[PaulaS Volunteer in reply to Newcastle1962]

Hi Newcastle1962, Yes it would be good to ask your GP for the Pneumonia vaccine. Make sure you ask specifically for the Prevnar 13 (PCV13) vacc. Many GPs just give the other Pneumonia vaccine, called Pneumovax 23 (PPV23), but it's not nearly as effective as the Prevnar13. You can have both vaccs, but it works best to have Prevnar first and Pneumovax at least 8 weeks later.

Prevnar used to be only given to young children, but the guidelines have changed and it's now recommended for adults with poor immune systems too. Not all GPs are aware of this.

While you're thinking about vaccs, ask your GP for the Hib vacc too, and MenC. Most CLL specialists recommend these for their patients.

I realise you're fairly new to the site, so a belated welcome to you. I can well sympathise with getting a diagnosis and being told nothing more than watch and wait and don't worry... Not very helpful. It was because of this, that i wrote a few posts that collected together things we can do to help on our CLL journey. Maybe you've already seen these, but here's the link.

healthunlocked.com/cllsuppo...

Wishing you all the best,

Paula (in Sheffield)

[PaulaS Volunteer]

Hi efun,

Welcome to this HU site.

I can see that the issue of shingles vaccs in very early CLL isn't straightforward, and different doctors may have different opinions on it.

However, the vaccinations that most doctors DO recommend as being beneficial and safe for CLL folk are

1) The HIB vacc (Haemophilus influenzae type B vaccine.)

2) Meningitis vacc

3) TWO pneumonia vaccs - Prevnar 13 (PCV 13) and Pneumovax 23 (PPSV23). If you haven't had any pneumonia vaccs before, it's recommended that you have the Prevnar FIRST, followed by the Pneumovax at least 8 weeks later.

4) Annual flu vacc. It's recommended that spouses, partners and carers also get the annual flu vaccs. If they don't get the flu, then they can't pass it on to CLLers they are in contact with (who won't get as much protection from the vaccs as others do). In the UK, such folk (spouses etc) are entitled to have flu jabs on the NHS.

My GP was hesitant about giving me the Prevnar vacc (one of the Pneumonia vaccs) at first, but he checked it out and then agreed to give it. So, sometimes you need to be a bit pro-active about getting your vaccinations. As well as asking your GP about all the above, you might like to ask about possible boosters for other vaccs (eg Diptheria, Pertussis/whooping cough, tetanus).

Wishing you all the best, as you travel the CLL journey...

Paula

[Quarry]

Hi efun

I am of a similar age and 3 years into CLL journey. I would always ask my CLL-specialist haematologist about vaccinations, as they understand the disease: I would not ask my GP, as they see so few CLL cases and thus have very limited knowledge.

I decided not to have the Shingles vaccination, having discussed it with my haematologist. (Pneumonia vaccination I did have.) As this discussion was around 2.5 years ago....I am struggling to remember the exact reason, but I think it was something around the hassle was not worth any potential benefit.

Bottom line is there is no rush: ask your haematologist at next visit.

And at you next visit, do ask questions (just noticed the bit about how he told you 'Chronic', come back in six months...very bad doctoring). There is lots of (good and true) info on this site - lots of other sites are wildly off-the-mark. It will help you formulate questions. In my first consultations, I used to take in 2 or 3 questions to explore (not too many, or answers are too short). The main things with this disease it that you will have many years (and many consultations) to get to understand the disease: and treatment might well be 10s of years off yet.

[andygm]

Hi efun, I'm newly diagnosed after a routine blood test. I was 18 in May, had another test 2 months later before my Haemo appointment and it had risen to 21. The same as you no symptoms etc. I have no knowledge about what you are asking reagrding inoculations, there are plenty of people on here who can help you with that advice. I just want to show support, as I understand how you may be feeling. My consultant said the sam as yours, just carry on and we will monitor, They see a lot of patients and some with much higher counts than ours. I thought that it it would take a while to get my head around everything, but apart from splashing out on a new motorbike (might be a midlife crisis there too!) I have carried on as normal and virtually put CLL out of my mind. It comes back to me sometimes, but without any symptoms I have no fear (at the moment!). Easy to say, but just carry on and be aware of what you do. This site is great for help, advice and a few calming words!

[june65]

Hi Efun, Just to put your mind at rest a little, I too was diagnosed with CLL about 12 months ago, the one thing in my favour, unfortunately, is that my husband also has CLL (10yrs) and as I have been through many ups and downs with him I know that there is no need to panic, things can seem very wrong and yet there seems to be plenty of time to make decisions and treatment choices. The best bit of information I have gleaned from this site is get a SECOND OPINION from a CLL specialist.

Take care

June.

[sun_flower]

Hi Efun,welcome to the gang,I have had CLL since 2006 although not diognosed untill the flo cymetry test last December,my numbers are very much like yours and havent moved much in all that time so yes Chronic is the word hopefully in your case too,I have recently had the vaccinations that Paula mentioned but not the Shingles because its live.I would like to send you good health and a very long watch and wait or worry as I call it,i always think of it as a parrot on my shoulder which rears its ugly head sometimes and just wont fly away,HU has been a source of comfort to me,its great to let off steam now and again.Maggiex

[SeymourB]

Hi, efun!

I'm not a doctor, either. But I know that vaccinations are all about antibodies.

I actually had shingles 4 years before I was diagnosed, and all my typical blood counts (CBC) were normal back then.

I am a 60 year old American. I am stage 0, diagnosed in 2010. My Absolute Lymphocytes are 13K, which is not that high. No swollen glands yet. Fatigue, chronic sinus, ear, and gut infections - and hangnails.

I see a hematologist and an immunologist.

I would recommend having your pneumonia vaccination results checked 4-6 weeks after vaccination to see how many antibodies you built up. That might give an indication of your body's ability to make new antibodies.

In my case, I had the PCV13 (13 pneumonia serotyoes) in 2012, and when checked, I only had adequate response to 1 of the 13 serotypes. We repeated the test the following year, and I had good response to 2 of 13, and 7 others were at the low end of adequate.

I would also recommend IgG, IgM, and IgA tests. My IgG is below normal, and IgM and IgA are low, but normal. If those are low for you, too, I can't imagine a doctor recommending even a weakened, live vaccine.

Despite the low antibody results, I still get the annual flu vaccination, because I still build up some response, and it's not a live virus. I don't experience any discomfort other than the stick.

[Peggy4]

Hi efun. Nothing to add to the great replies already posted. Just to say Hi. Here you will find lots of good advice from some very knowledgeable people. Let us know how you get on. Peggy

[StupidPlanet]

I'm at Stage 0 and received vaccines for shingles, and yellow fever so I could could travel to Ghana. I had no issue.