Confusion over vaccine efficacy for MPNS

[amarylis]

A headline this morning seems to be focused on the dangers to people with immune deficiency and the lack of protection afforded to this group. Blood cancers seem to be singled out when discussing this group. I recognise that there is a huge difference between people with an MPN and those with leukaemia (for example). However, Blood Cancer UK have included MPNS as people who are likely to be in danger from COVID19 even after being fully vaccinated. I have lived with ET for over 25 years and have lived a full life with very little in my life having been impacted, save the 3 monthly monitoring and daily dose of aspirin and 500 mg of Hydroxycarbamide. I am fully vaccinated. But am I safe? How can people like myself discover whether they are protected or not are all MPNS the same when it comes to protection from the vaccine? At the moment it feels as though I’m in a never ending game of Russian Roulette.

[WeylandYutani]

Hello amarylis,

I will copy & paste what I wrote in another thread first:

As far as I understand it heavily depends on whether you are already on some kind of cytoreductive medication (and so influencing/suppressing your immune system) or not.

In case you are doing watch and wait I wouldn't worry at all.

As you are taking HU it might be a good idea to have your antibodies checked (this would also ease your mind with respect to the Russian Roulette).

Take care!

[MaggieSylvie]

Yes, we are all in the dark. How can we even explain to our families that we may not be safe to mix the same as the general population?

[Whitehair51 in reply to MaggieSylvie]

I know what you mean about explaining to family. I live in Vermont and my 88 year old brother died last month, he lived in Wisconsin. I didn't go to the funeral and feel so guilty about not going. I'm on hydroxy urea so I'm unsure of my immunity. I'm hoping to get a spike protein antibody test.

[MaggieSylvie in reply to Whitehair51]

A month ago there were few restrictions lifted. At that distance I doubt you were the only one who didn't attend the funeral. They should understand and you should not feel guilty. It's a long way to go even without the pandemic.

[amarylis in reply to Whitehair51]

We’ve had very similar situations whereby we were unable to get to funerals due to the pandemic. No guilt should be felt as the choice has been stolen from us by the pandemic. But deep sadness is completely understandable at not being able to attend. x

[Lena70 in reply to MaggieSylvie]

Explaining anything about my MPN to my family is difficult and frustrating. I’m realizing I’m stuck in the “invisible illness” trap.

[amarylis in reply to Lena70]

I know can be tough 😥