Covid vaccine or No Covid vaccine

[Grizly]

Hi Guys

I have Primary Myelofibrosis. Bloods cells slowly going south platelets in the 60s red blood cells in the 90s. Still on the watch and wait treatment at the moment

I had 5 Covid vaccinations but the last 2 jabs. Moderna which gave me I’ll sweats and chills and generally feeling terrible. Didn’t get out of bed for 4 days. My last vaccination appointment I asked for Pfizer vaccine sadly very much the same outcome. Sweats, chills not being able to get out of bed for 3 days. I’m not sure if I want the autumn booster. I asked my Haematologist for advice and as usual she advised to take it BUT it would be my decision????

Anybody out there with the same dilemma

[EPguy]

Sorry to hear about your vax troubles. Has your Dr discussed long acting antibody treatments? Esp if your immune response may be low, this can be a preferred protection.

<<Evusheld long-acting antibody combination retains neutralising activity against Omicron variants BA.4 and BA.5, according to new study from University of Oxford>>

astrazeneca.com/media-centr...

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If you do opt for the mRNA vax, best to avoid Moderna since it is a larger dose.

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I saw your prior post that you may qualify for SCT. Has your Dr followed up with you on that? Are you otherwise not receiving any treatment?

[DJK12 in reply to EPguy]

Unfortunately Evusheld has not been approved for use in the UK and an earlier order for it cancelled.

[EPguy in reply to DJK12]

I looked into it a bit, very frustrating for UK cancer patients. I was UK approved last March but then they changed their mind, that explains the cancellation they did to you:

<<Authorized for use in many countries around the world, including the United States, AstraZeneca’s Evusheld is a one-of-a-kind COVID-19 product—with the rare ability to both prevent and treat infections.

But in AstraZeneca’s home country, it will not be available>>

<<Helen Rowntree, the director of research, services and engagement at Blood Cancer UK, told the BBC that people who have blood cancer and other conditions are “absolutely devastated” and are “not understanding why this is taking so long.>>

fiercepharma.com/pharma/uk-...

[Grizly in reply to EPguy]

Still unsure of having the Covid jab. I had another BMB last week awaiting the results. My haematologist has given a heads up to the transplant team. As yet no suitable matches sadly

[EPguy in reply to Grizly]

Good to hear you're authorized for SCT, look fwd to hear your progress finding the match.

You can see the details on the Evusheld, that explains why you've not heard about it.

[Scaredy_cat]

With blood figures so low, why is the haemo still on watch and wait?

[Grizly in reply to Scaredy_cat]

I must admit feeling a bit scared as there seems to be no real plan at the moment. Though my Haematologist has informed the transplant team but no response from them yet. Could be there is still no matches for me sadly. I have asked if there was any trials I could join and was told there was none at the present time. I do feel cast adrift but I have a super wife who won’t let me get too down.

[Scaredy_cat in reply to Grizly]

This situation seems awful. Has he/she not mentioned ruxolitinib ? The criteria for me was that platelets had to be below some figure. But the drug can lower the blood figs further. How much experience has your haemo got with MPNs? If you are in the UK perhaps a request for help from Claire Harrison at Guy's could be considered. On the sct, I have been forwarded to a different hospital and am yet to have an interview there but my own hosp has done a lot of the preliminary work like heart, liver checks

[AnBee]

Was there any information for informed consent offered by your doctor outside of it is your choice? There is a lot of data collected worldwide on this subject which there wasn’t earlier on.

[Grizly in reply to AnBee]

Not from my haematologist but will ask the question with the vaccination team.

[EleanorPV]

I had a heart reaction with my vaccine. Medical expert say I can’t have any further.

[Mwalimu]

I had a bad reaction after my 4 th dose recently. (Moderna which I had not had before.) I vomited for about 24 hours and had a lot of body pain. Finally crawled out of bed after 3 days. Currently have decided not to have a 5th dose but may change my mind. Like you I feel very uncertain. Sallie

[EPguy in reply to Mwalimu]

There are indications in some studies I've seen that continuing boosters with the same vax has diminishing returns so you're hesitation is understandable. I think I've posted on this before. I've not gotten the 4th. (but the early 2020 infection I had is a "vax" event by itself)

If you decide to consider another dose there's two things might be helpful:

-The current booster should be more useful than the prior ones since it is bivalent, including Omicron. Current thinking is a more different vax should provide deeper protection.

-To reduce odds of a reaction, (not eliminate of course) you can select Pfizer (30mcg) , it is a smaller dose than Moderna (50mcg)