Newly diagnosed with CLL after tissue samples from my basal cell skin cancer came back. Has anyone in the Uk had the Shingrix vaccination? I understand it’s not available on the NHS. The only clinic I can find is HH Pharmacy, Hampstead Heath, London? Not getting much joy from the hospital I’m under. Took over a month to inform my dr and that’s only because I made a nuisance of myself. When I needed to ask a question with regard to holiday vaccinations they told me to contact the CLL support group. Maybe you could help me out here - should I be insisting I have flu, pv 13 and pneumovax 23 and meningitis vaccinations. I know I’m on “watch & Wait” (well, until they’ve discussed my case and tested my bloods) Any advise on questions I should be asking?
Would like to be boring but just starting out! - CLL Support
Would like to be boring but just starting out!
Jane,
Please don’t panic. Shingrex is not available on the NHS and I doubt in the near future. Next flu vaccine should be out September ish. Where are you in the UK.
Colettex
I’m in East Yorkshire, trying to research, whenever I have the time. Everyone seems so knowledgeable about their bloods etc. Difficult absorbing all the relevant information all at once. I guess I will be a pro in no time!
Thank you. Looks like I will have to do some overtime as it’s £500 over here, plus travel and overnight stay.
Hi Jane,
Greetings from another Yorkshire dweller. A great place to live!
As a newly diagnosed person, you might be interested in the following article. It’s a collection of “29 Things We Can Do" to help our journey with CLL. These are not complicated things– just practical suggestions based on the collective experiences of different people on this site. Many people have said they wish they’d had this info when they were first diagnosed, but still find it a useful reference now.
Not everything will be relevant to you, as we’re all very different, but I hope you'll find some useful points there.
healthunlocked.com/cllsuppo...
I see that you're asking about vaccinations. I would certainly ask your GP for the two pneumonia vaccinations (Prevnar 13 followed by Pneumovax), meningitis vaccines, and flu (though this isn't the season for flu so it might not be available now). This post gives more details. healthunlocked.com/cllsuppo...
The earlier you get your vaccinations, the better, as our responses to them get worse as the disease progresses.
As others have said, Shingrix is relatively new and not yet available on the NHS. Some folk have got it from the Hampstead Heath pharmacy. Even in America, some people find it hard to find, and there seems to be a worldwide shortage. Some doctors are happy for CLL patients to have it now, but some would rather wait for more research to be done on it.
Wishing you all the best, as you learn to live with CLL,
Paula (in Sheffield)
Hi Paula
Thank you for the information. Basically, I am researching as much as I can about CLL in the hope of being better prepared at my second appointment. The first was a blur, an unexpected diagnosis and sent home with a handbook to read and we will see you in 3 months.
The other vaccine pushed in the US is the DPT - diphtheria, pertussis (whooping cough), tetanus - as we have had outbreaks of whooping cough over the last few years.
I will add this to my list of questions for when the dr’s secretary calls me back regards other vaccinations.
Hi Jane.
Welcome!
CLL support is great here and Leukemia Care. Other Sources exist too. Many.
I can assure you, holiday vaccination advice is very much the domain of your GP, especially given you have CLL. You cld find that yr GP may be uncertain and wish to defer back to yr CLL Haematologist. They should be helpful!
Vaccination are very important. Never have a live vaccination.
Do keep in touch too!
All best wishes.
Jig. UK.
Hi Jane
It sounds like we may be having a similar journey through CLL and I hope my experience may help.
I was diagnosed in 2016 following pre-op blood tests for a Basal Cell Carcinoma which was successfully removed. I am still on Watch & Wait for the CLL with appointments every 6 months and I have Dermatology check-ups every 9 months.
I had been having free annual Flu jabs from my GP for a few years when I was working in health and these continued after I retired and had the CLL diagnosis. My husband also gets them (as may anyone else in the household at the GPs discretion) as I am “immunocompromised.” A useful label to use when seeking a GP appointment!
Unfortunately I was given the 2 Pneumonia vaccinations in the wrong order, but had the PCV 13 about year after the PPV 23 without a problem.
The current advice is TWO Pneumonia vaccines –
First Prevnar 13 (PCV 13), then at least 2 months later –
Pneumovax 23 (PPV 23 - also known as PPSV23).
In March I had a very sore hot rash around my ribs and felt very run-down and tired, so I went to see my GP who did not think it was shingles. It lasted a few days but I still feel very fatigued. When I mentioned it to the CLL consultant he was more concerned and we discussed Shingrix and the fact that it is available at a local pharmacy. He said it ought to be available on the NHS to anyone that needed it but that the research was inconclusive for CLL. I am now on Acyclovir anti-viral for life!
He also referred me to the dentist within the Haematology department as I have 2 grumbling wisdom teeth which may be also be dragging me down. They are coming out on Monday.
In general, it seems that CLL changes how the immune systems responds and you may find that you can get an exaggerated reaction to some things such as gnat bites and a muted response to others. It is possible to have a sub-acute infection which can make you feel tired without the obvious symptoms and you may find you seem to get fewer colds.
It certainly makes sense to get your jabs and any minor things sorted out, but it’s bloody hard work!
Hi after watching a Cll conference, the main focus was the discussion on vaccinations and further more, the delay in communication between haematology and dr. Ideally, the clinic should deal with the vaccinations required by the patients. These should be administered after the initial diagnosis. However, according to statistics, very few patients had any at all, leaving a high percentage off CLL sufferers, vulnerable to infections. So far, I have spent the last 5 weeks chasing haematology just to inform my dr of my illness. The last 2 days speaking to my dr to refer me to a specialist, then giving a list to haematology of the vaccinations I should be having, which then has to be sent to my dr. Some patients may think that the “watch and wait” is just that, literally. Is this situation the same for everyone. Having to research and fight for your own survival or do I expect to much, too soon?
Unfortunately, your experience and otonal's is far too common as PaulaS can well verify, from all the feedback she has received in response to her posts about the importance of boosting our immunity via vaccinations, which she referenced above.
We need to be advised by our specialists to get our non-live vaccinations up to date as soon as possible after we are diagnosed and then have our GP/PCP maintain our coverage for vaccinations like pneumonia and the flu, where we need our immunity boosted or updated. What immunocompromised folk like us need is documented in on-line country health references, but the documents can be confusing and are updated regularly, so your primary doctor needs to keep up to date with these reference documents. It's a pity that often we need to get our specialist to push our doctors to provide these basic, but critical medical preventive measures - we aren't the only immunocompromised folk around.
Neil
Perhaps this area should be brought up in discussion at the Forthcoming CLL conference. Not all CLL Sufferers have internet access or the confidence to challenge these procedures. Isn’t it time to change, educate, retrain and make this standard practice. In our daily lives and at work, communication or lack of it is nearly always the issue.
Another problem in the U.K. Neil is that vaccinations in surgeries are often dealt with by the nurses. So when I asked for Prevnar a few years ago the nurse refused to give it to me, and quite frankly at the time I didn’t have the energy for an argument. Will start the process again next year but now it’s all on my notes as I discussed it with my GP at a later date.
Colette
I feel for you, that you were treated in this way, especially when you are fatigued mentally and physically. Take good care of yourself.
Thank you Jane.
Have been on Ibrutinib for over a year now and am doing well thank you.🤞
It’s sounds as though your hospital and GP are not communicating well. Your GP should be able to access all your hospital notes, but I have also played carrier pigeon and taken in letters from my GP as she thought they would get lost in the system.
Colettex
Jane and Colette,
There has been a program to educate GPs in the UK about early detection of leukaemia: leukaemiacare.org.uk/suppor...
It's the same situation in Australia, with nurses giving vaccinations, but your GP tends to be more involved. Definitely there's an education gap that needs addressing and that's an excellent role for our supporting charity organisations.
Our US members are benefiting from a CLL Society program to educate doctors through training sessions and this education toolkit: cllsociety.org/patient-educ...
Neil
Neil,
That’s a positive step. Back in 2007 I was given a website to look at after diagnosis as my Doctor hadn’t a clue ! They told me I had mumps !
I have recently got involved with McMillan at Kings on Patient Information and lack of communication before, during and especially after treatment is a common complaint. There just doesn’t seem to be enough ‘joined up thinking ‘ and sadly we have to be our own advocates. But having learnt the hard way I don’t stand for any nonsense now.
Colette
My lovely GP has limited knowledge of CLL but was extremely willing to answer any questions I had and those that he couldn’t, he found out. He was also willing to refer me to a haematologist early on at my request and then to a CLL specialist when I felt the need. The fact that he is so approachable helps me immeasurably. Makes all the difference.
Peggy 😀
Peggy you are fortunate. I luckily am in a large practice so I worked my way around until I found a doctor I like and she is brilliant, and I don’t have to run through a saga because she remembers my case history 😀
Colettex
Exactly Colette. Finding the right person is paramount to our wellbeing. 😀
I will keep searching for mine, he/she is out there, somewhere!
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