Covid Vaccination

[azaelea]

Hello all, I'm over 80 and have ET JAK2+ and will probably be one of the first, after NHS workers and care homes to be offered the vaccination. Does anyone know what the top Haematologists' views are on what effects it could have on MPN patients? Perhaps we might hear what Prof. Harrison's views are soon. I have great reservations as to how we could be affected, side effects etc.as some of us have enough to cope with already. Regards, Fran

[piggie50]

I agree with you azaelea.

It would be lovely to get Prof Harrison’s view. Even if it’s just a general view. It’s pointless saying discuss with your own consultant as mine didn’t believe I should be on the shielding list back in March! I shielded of my own accord.

Judy

[EleanorPV]

I think one point might be was there any MPN patients on any of the clinical trials for these vaccines? I would imagine not.

I'm personally pro these vaccines as I don't like seeing the 'fit and healthy' health workers who have died already.

[friendofpiglet in reply to EleanorPV]

I signed up as a volunteer, and I know a couple of others on this forum, on either side of the pond, did also. I've yet to hear that any of us were selected though. You'd think we were ideal subjects would you not?

[piggie50 in reply to EleanorPV]

I signed up as a volunteer as I am for the vaccine but didn’t hear anything.

[BeckyDing]

Hi It would be great to have some clarity around the vaccine! I also signed up for the trial when they were asking for people to sign up who are vulnerable but haven’t heard anything yet. I had a discussion with a consultant last week but wasn’t any of my regular consultants who said well you don’t need to worry being low risk! I said why have i been getting shielding letters since March then.. he said oh yeah, hoping one of my regular consultants ring me in 7 weeks for my next catch up. Any advice would be much appreciated.

[Stevesmum42]

I don’t think I will be rushing for this vaccine I will continue shielding and taking care until I have seen some of the longer term results . I don’t particularly like living like a hermit, it’s not that great for mental health but feel it’s the best way I can look after my physical health. I think we all ultimately make choices for ourselves to do what we feel is best , especially when the messages from the ‘powers that be’ are so very mixed. Take care all.

Love Sandy x

[Ebot]

Completely agree. It would be very good to have a clear (or as clear as can be) directive from the Prof.

The word from the inside is that the vaccines are safe for immunocompromised individuals but that each patient should take advice from their individual consultants. Easier said than done I suspect.

I’m totally for vaccines but I’d really like to be able to make an informed decision. Nothing is risk free but it would be helpful to be able to weigh up the risks and the benefits to me.

And certainly, even if I am vaccinated I’m not going to change my current defensive practices. Having the vaccine does not guarantee immunity. (And that might be exactly the issue for MPNers.)

[friendofpiglet]

If I were Prof Harrison, I'd feel between a rock and a hard place. I'd be cagey about saying 'yes, it's fine - go for it' and certainly can't recommend that anyone avoids the vaccine.

I won't be invited to get jabbed until group 4 are in line but will certainly share my experiences here once I do, and it would be great if anyone here who is further up the pecking order will do likewise.

I hasten to add that despite being vaccinated myself, I will continue to exercise due caution until the great mass of seemingly irresponsible youth no longer pose the threat of infecting me.

Andy

[PeterET]

At my recent Christie's appointment in Manchester I had this discussion with Prof. Somervaille's colleague.He was very much of the opinion that I should have the vaccine as soon as available and avoid the "3 household" Christmas socialising with family and friends as it was not worth the risk. I was also advised not to return to the gym/pool until spring even after having the jabs.

I hold their opinion in the same high esteem as Prof. Harrison's so will follow this guidance.

I'm a very fit 71 year old with ET CALr but will follow medical guidance as always.

Stay well (& hopeful!)

Peter

[Leonardo]

I am 83 , have ET and on Hydroxycarbomide - also on Warfarin having had 2 significant Pulmonary Thrombosis events.

I do wonder how I am placed ! Leonardo

[Cindy12]

As an over 80 year old with pre-fibrotic myelofibrosis CalR, I am pleased to be able to go for my first jab next Tuesday. At my age I feel I have nothing to lose by going ahead with it. It will be a welcome present for my birthday the next day! Take care everyone.

[Mollymag2 in reply to Cindy12]

Perfect words for how I feel. It's a personal thing. In my opinion, any questions asked of the hematologists, oncologists, any professional..well, this is an untried vaccine, they cannot say with any certainty in most cases what the effects will be..perhaps a better response than a go. I would feel ..or not, haha, stupid to not receive the jab than wind up with the disease. Hard sometimes to have faith, but sometimes required.

[Paul_1971]

When I am called forward (Group 4) I will snap their hands off.

The sooner we are all vaccinated the better for me, lets get back to normal.

[Cja1956]

I have been reading and listening to experts around the US. They are saying that the vaccine has not yet been tested on people with cancer and so they can’t guarantee the side effects of the vaccine. So now I’m even more wary of taking it. I guess I’ll be one of the ones who will wait until they do more testing. I also read that if your caregiver takes it, he should consult with his doctor and make sure that the doctor giving him the vaccine knows that there’s someone who has cancer at home. Someone who takes it that lives with you should still isolate because they could still give it to you within the first 10 days to 2 weeks after he takes the vaccine. There’s so much to consider.

[mhos61]

I do understand your concern Azalea. I hope that your haematologist or Professor Harrison can offer you some reassurance. Although, I imagine it’s impossible even for an expert to offer guarantees.

Personally, I have no qualms and will definitely be taking the vaccine when it is offered. I will also be encouraging my 94 year old Mother to take it. For me, the alternative poses the bigger danger by far.

The way I see it is if we want a Covid free future we have to suppress transmission. This vaccine is our best bet, even though it will be some time before we see a return to normality. I’m hopeful!

[Mazcd Partner MPNVoice]

Hi Fran, I have asked Prof Harrison and she has said - all are fine with vaccine in general, and she has also advised that all decisions regarding the vaccine will be taken, bearing in mind relative risk… vaccine V disease.

Best wishes. Maz

[EleanorPV in reply to Mazcd]

Thanks Maz and thanks to Prof Harrison for her reassurance.

[azaelea in reply to Mazcd]

Thank you Maz, and thank you to Prof Harrison for her advice. Regards, Fran