Hi I’ve recently topped up my covid 19 booster as I have Polycythaemia vera ('PV') and am Jak2 positive and I was invited to attend but I see so many mentions of ‘oh what’s the point’ people saying to me why are still doing that it’s a conspiracy anyway - it’s all quite unsettling. I wondered what fellow Polycythaemia vera ('PV') sufferers are doing?
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My diagnosis wasn’t Polycythaemia vera ('PV') but Myelofibrosis.
I had a donor Bone Marrow Transplant last year.
I’m getting all my childhood vaccinations as immunity wiped as a result of transplant.
I was offered and took advantage of the summer COVID booster as it hopefully gives me another bit of protection.
Also avoid large gatherings and wear a mask when shopping or going for hospital appointments.
I guess it’s personal choice at the end of the day and no right or wrong choice
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Hi @ChristopherP I have Chronic lymphocytic leukaemia ('CLL') and I have had every vaccine and Covid booster going as I have a weakened immune system.
We are very unique people with blood cancers, but we all have our medical challenges and, in my opinion, I need all the help I can get. I keep away from the internet as much as possible.
It is very much personal choice, but perhaps have a word with your medical team or the Blood Cancer UK nurses on 0808 2080 888.
The main thing is to take lots of care of yourself.
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Hi @ChristopherP @DuncanB and @Erica I have a different, but associated Myeloproliferative neoplasms ('MPN'), Essential Thrombocythemia, and was diagnosed back in 2018, some 6 months after my first, to date, heart attack. I still have my Covid-19 jabs, although somehow managed to miss one in the early years of Covid. I had my most recent one in May of this year.
As it is a personal choice, and we are more vulnerable than most, I carry on with them. It can take a bit of “artful juggling” with booking dates so as to avoid having the Covid jab around the same time as Pegasys injections, and they do like to administer the Autumn Covid jab at the same time as the flu jab, which tends to “knock me around” a bit.
Still, we are still here to talk about it all.
As always, my Forum Friends, take care, stay safe, keep on smiling and be kind to yourselves.
Best wishes,
Jimbo165
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Hi there,
Thank you all for your answers and with regards to my haematology team there advice is simply do what you think best. I would prefer it if they said you should have it and I guess with my diagnosis my immune system may be more at risk than others so I will continue.
Blood test next week and I feel like my levels will require a venesection. I’m certainly used to needles now so a covid jab is easy!
Best wishes,
ChristopherP
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I’ve been having venesections about every four weeks since start of the year @ChristopherP
Trying to get my iron levels down to an acceptable level. Number of blood transfusions during Transplant reason for higher iron levels.
You certainly get use to them pretty quickly.
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I was diagnosed with Polycythaemia vera last October and was offered the spring Covid booster a few months ago. I hadn’t had a booster since 2021 so I thought why not. Some protection is better than none and I was offered it whilst others aren’t so let’s try to be safe.
I told my consultant (as I was having the booster after my appointment) and the nurse who was there pulled a face and said ‘why bother’ which bearing in mind she is a health professional I thought was a bit poor. But each to their own. Just do what you think is right for you and taking care of yourself is a must so if this helps you to stay safe then that’s a good thing 
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Hi all, just popping in briefly - really glad to see this conversation, and it sounds like you’ve each made your own decisions.
One thing I wanted to add - if any of that “what’s the point” chatter is playing on anyone’s mind, our Healthcare Professional Advisory Panel has looked at this and continues to recommend people with blood cancer take up boosters when offered. Might be worth a read if you want something concrete to weigh up.
Take care all, and good luck with the blood test, @ChristopherP. Do let us know how you’re getting on.
Ceri - Blood Cancer UK Support Services
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Thanks for sharing this really good article @Ceri_BloodCancerUK
Hope you enjoyed your Conference
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@DuncanB thank you, it was interesting (though London in a heatwave is not my favourite thing I must say)
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Bit late to this @ChristopherP, but like you and @nict I live with Polycythaemia vera ('PV'). My haematologist has told me that my immunity is weakened due to the Polycythaemia vera ('PV') and its treatments and so keeping up to date with vaccinations like COVID-19 can help protect people like us.
In my case I have never had COVID-19 and only a couple of rubbish little colds since diagnosis so I do think vaccinations have helped. I even had the pneumococcal vaccine and was questioned by the nurse about it as she thought I was too young!
Trust the science I’d say, like in that link @Ceri_BloodCancerUK kindly shared above, which has great information should you want to share it with any conspiratorial folks.
Glad you’re finding the venesections tolerable @ChristopherP—like you, I’m used to needles these days. Hope the blood test goes well next week, do please let us know.
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