Im uncertain whether to have the covid vaccination.. can anyone help. I have Essential Thrombocythemia so does this make me vulnerable.
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Hi @jules64
Thanks for your question.
We have some information about getting vaccines with Essential thrombocythemia (ET) on our website here: Looking after yourself with ET (essential thrombocythaemia) | Blood Cancer UK
It says:
Getting vaccinated
Because your immune system may be weakened by the Essential thrombocythemia (ET), it’s important to get all the recommended vaccinations.
People with blood cancer shouldn’t have live vaccines, but luckily very few vaccines are live. None of the covid and seasonal flu vaccinations used in the UK are live, so they are safe for you to have.
If you are unsure, ask your GP or hospital team which vaccinations you should have. We have more information about vaccinations in general and also getting covid vaccinations when you have blood cancer.
You may also want to read our page about managing your risk of infection, as people with Essential thrombocythemia (ET) may be more likely to get bugs like colds, flu and covid-19.
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Hope this helps.
Kind regards,
Ali
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Hi @jules64 I cannot better @Ali_BloodCancerUK response.
All I can say is my own experience and I have Chronic lymphocytic leukaemia (CLL) with a weakened immune system and I have had every Covid vaccination available with no side effects apart from a bit of a sore arm for a couple of days.
I have personally not had Covid.
I have also always always had my flu vaccinations
Obviously it is personal choice, but personally again, medical advice from your medical team who know your whole medical history might help you make a decision.
Please do let us know how you get on.
Look after yourself.
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Thank you for your replies. I think you have answered my question and think I will definitely have the vaccine. Hopefully the side effects wont be too bad.
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Hello @jules64, just to offer another response but I have a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET), Polycythaemia vera (PV), and I’ve had whichever COVID-19, flu and now RSV vaccinations have been available with no issues.
After the latest COVID-19 vaccination I did have flu-like aches, a bit of a fever the day after, and an impressive bruise at the injection site a few days later, but nothing to write home about.
And since the latest vaccinations, blood tests show my blood cells are behaving normally and I’ve been to a bunch of concerts at indoor venues, masked up, and not come down with anything. So my case study of 1 shows good results!
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Thank you for the replies. Next question, had my results yesterday and my platelets have gone back up, i recently had a chest infection and was on antibiotics. My CNS said it could be due to the infection, so will do repeat bloods in 3 weeks, so do i have the vaccinations now or do i wait until after the next blood tests.
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Oh @jules64 I reckon that is a question for your CNS or GP.
It sounds as if your CNS is very efficient.
Look after yourself
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Well to be honest Erica, i decided to ring them today to ask, their reply was it was up to me. So i have booked it for a couple of days after my blood test.
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I may offer a slightly different view. I am the UK Head of Health for one of the big global pharmaceutical companies and chairman of another health company, so no tinfoil hat wearing antivax sceptic. Since my Chronic lymphocytic leukaemia (CLL) diagnosis i have been researching possible causes. Vaccines work by stimulating white bood cell activity. The more vaccines we have, the more we normalise the hyperactivity of our white cells. I am focusing my research on the effects of regular, multiple, repeated vaccinations on immunosuppressed people. There is a potential for the unintentional consequence of damage to our white blood cell systems caused by a relatively sudden increase in the number of vaccinations over the last 20 years. With Flu, COVID-19, Pneumococcal and RSV vaccines all widely available and their use insentivised by the pharma companies, it’s little wonder that conditions such as Chronic lymphocytic leukaemia (CLL) are on the rise.
I had to instruct my haematologist not to take blood samples the day after my COVID-19 and Flu vaccines last week, as the white blood cell results would have been haywire and i may have been given unnecessary treatment. Why I’m having to instruct them on the basics is a reflection of the current standards of care at modern facilities like The Christie in North Manchester.
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Thankyou dave for your reply. I’m sorry to have read your story on a previous page and of your diagnosis. I appreciate your post in relation to my question. I have booked my covid vaccine for a couple of days after my bloods are due, so hopefully it wont interefere and my bloods will be better save having to have an increase in the Hydroxycarbamide. I will then have the flu vaccine after.
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@Dave_Hazell hi! How are you doing? I read this post with interest as I’m heading into the Christie in Manchester soon for a stem cell transplant as I have multiple myeloma,have you done any more research into this subject? As I’m reluctant to get the covid jab as I had a bad reaction to the one Astra Zeneca onr I had
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Hello there @Byrnebaby, hope you don’t mind me popping in here but COVID-19 and its vaccinations have come up a lot around the forum, so much so that BCUK shared this: COVID-19 vaccines and blood cancer latest evidence | Blood Cancer UK
This part is pretty comforting and influenced my choice to have all vaccinations available to me since; “the current evidence indicates that for people with immunosuppression caused by blood cancer, including leukaemia, lymphoma, myeloma, Myelodysplastic syndrome ('MDS') and Myeloproliferative neoplasms ('MPN'), or its treatments, the additional protection provided by COVID-19 vaccines is very likely to outweigh the small risk of side effects or complications.”
As you had a bad reaction to the Oxford-AstraZeneca vaccination, I’d mention this to your specialists and perhaps ask for one of the others if you choose to have it. I believe the UK can offer Pfizer-BioNTech (Comirnaty) and Moderna (Spikevax) COVID-19 vaccines, plus Novavax (Nuvaxovid) is available for those who cannot receive the other two vaccines.
@Duncan thanks Duncan, that’s really informative, I’ll have a proper look when I’m home from the hospital 
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@Duncan that’s a really useful link. Thank you. I have had all vaccinations offered but I always make sure I have a day clear afterwards as I usually feel very sleepy and unwell for about 24hours. Then I’m fine. I do know people who won’t have any more because they didn’t feel well, but if our immune response is boosted every time we have a COVID vaccination that sounds like a good idea to keep having them, regardless of side effects. Thanks again.
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Oh you’re welcome @Spimula, glad to read you’re keeping well. I’m vaccinated to the hilt as well and I am surprised by how mild their side effects can be these days! Perhaps all the injections we experience help us tolerate the vaccinations too 
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