Third primary dose

[amhann]

Hello people - just found a printable gp letter on the bloodcancer uk site - if you go on the site + put in a search ‘document for gp third vaccine’ kit comes up with 1 result (how to get covid vaccine) - scroll down + there is a third dose for blood cancer patients icon - I’ve just printed it to take when I go for my flu jab next week - May help for those of us I have no doubt will be ‘sidelined’ when it comes to a third primary dose (as opposed to the booster) - best to all Anne-Marie x

[mhos61]

Thanks so much for for this Anne Marie. This will be of enormous help to many. This forum and the contributors are so helpful.

I don’t know if I’ve got the will to navigate the system that I came up against at my GPs the first time around though. I kind of accepted waiting to be called for the ‘booster’ but at the same time I’m conflicted as to pursue a TPD🤔.

Mary x

[amhann in reply to mhos61]

I know what you mean Mary! - having been pretty much ‘left to it’ for the last 18 months + my bloods not being exactly where I would like them to be, I think I’ve decided to shout loudly for a TPD (who knows, it might prod someone to action)! very best to you, and continue to take care. Anne-Marie x

[mhos61 in reply to amhann]

Go for it, and I wish you the best of luck.

[Paul123456]

Has anyone on this Forum been offered a third Primary?

Reading the guidance it appears that low Lymphocytes are a key criteria (less than 1).

In general, MPN patients are okay on this score?

Also the guide includes those on JAK2 inhibitors such as Ruxo but I assume not Pegasys since this is actually meant to ‘turbocharge’ T cells?

I have very low Lymphocytes (under 0.5) but my local practice seems unaware of the third jab. I believe the third jabs are meant to be being implemented now, pre the booster roll out.

[CalL1981 in reply to Paul123456]

Yes I received a text message on Friday. No specific reason for the invitation was given.

[EPguy in reply to Paul123456]

That's helpful that UK offers guidance on WBC numbers to be considered immune compromised. USA just includes in effect "any blood cancer patient".

For us USA residents, are there more details in the UK guidance we could have to help our knowledge?

I got Pfizer vax #3 today.

[amhann in reply to EPguy]

Hello ETguy - good to hear you’ve had a 3rd jab - I’ve not really kept up with ‘what and what isn’t’ deemed as immunocompromised - just know my whites, neuts + lymphs are not where I’d like them to be - have not had the opportunity to participate in any antibody studies. I just happened on the letter on the bloodcancer site but don’t think it’ll make them race to give me a 3rd jab! Shouldn’t have to wait too long for the booster though. Very best Anne- Marie.

[EPguy in reply to amhann]

If you think there is any other interesting info on the blood cancer site you found, could you provide the link?

Thanks

[amhann in reply to EPguy]

Soz I’m absolutely rubbish with tech + no idea how to post a link - however if you google bloodcancer.org.uk and search jcvi Coronavirus, there are various topics to have a look at. Not sure if it’s quite what you’re after, but there’s probably more knowledgable bods on this forum (also the MPN voice website has lots of topics covered) Anne-Marie.

[lizzziep]

Thank you for that. My GP said the vaccine is nothing to do with them, my husband (different GP) was never sent for for the first 2 , despite being 70, and ended up just going to a vaccine hub and asking for the vaccine both times. My GP said if I was vulnerable - he doesn’t think I am - that ‘someone’ would send for me.

[Jynx93]

I’ve just had a text to make an appointment on Saturday for my 3rd booster jab

[beetle]

Thank you for posting the link to the letters for GPS. I read it just before a telephone appointment with my GP for something else. I think she was quite taken aback that I seemed to be so knowledgeable about the vaccine situation! She had no idea that third primary vaccines were in existence nor that mRNA vaccines were being recommended. Apparently our practice has a ‘Covid Coordinator’ who, according to my GP, “knows all there is to know about Covid” and she will ask her! That remains to be seen. How many times do we remind each other that we need to be knowledgeable about our own conditions so we can be our own advocates?! It certainly seems as though recognition of our so called orphan diseases is not generally improvingStay safe everyone

Best wishes, Jan

[amhann]

Have to say I just happened to see the letter icon which does say it’s in association with prof Harrison + Guys - though to be fair it does seem to be more a ‘plea’ to include all blood cancer patients at whatever stage or treatment for a 3rd primary jab (only thought to have a search round given that nothing ‘our leaders’ have said or the information given on line have even mentioned 3rd primary jabs) - will see what comes of it, though fully expect to be told ‘we know nothing, trot off+ wait for the booster’! Anne-Marie x

[DJK12]

There is certainly a deafening silence in Scotland about the third vaccine and I note that the helpful letter is only addressed to English GPs. There is a lot in the Scottish press today about boosters being started, but nothing about the third vaccine. After a lot of searching I found this on the Scottish NHS Inform site under "Who is being offered the coronavirus vaccine":

"People aged 12 and over who have a weakened immune system are now eligible for a third dose of the coronavirus vaccine. Your clinician will decide if you should receive a third dose. There's no need for you to take any action - your health board will contact you to arrange an appointment."

In early August I got a letter from NHS Scotland regarding anyone over 12 living with me or a carer being eligible for the vaccine as I was "coded as having a condition that leads to immunosuppression" (I'm on ruxolitinib), so I am reasonably hopeful that a blue envelope, (which is how we hear about vaccines) will appear if I'm eligible - nothing today! My GP contacted me and did my original vaccines purely because I was in the shielding group but perhaps that isn't going to happen this time. Everyone else under 75 went to vaccination centres or at least did so in Edinburgh.

Diana

[Bluesloth1]

Thank you. I spoke to both my Haematology nurse and my GP surgery and neither had heard anything about the third primary vaccine! I’m not optimistic and tempted just to wait for the booster now. Negotiating health care in the UK is getting increasingly difficult and stressful with the added effects of COVID. Good luck to all who are bravely plodding on. Xx

[piggie50]

Thank you for this link Amhann,

I have e mailed my Drs surgery and attached the letters from Blood Cancer UK and the JVCI , highlighted with the parts I feel applicable to me. What I found interesting reading was, if we have the third primary dose now we can then have a booster in 6 months time. Also, one can have the third dose just 8 weeks after the previous 2nd dose.

We will see what reply I get 😆

Judy

[piggie50]

Well, I’ve had a reply already….

We will only be doing booster Covid vaccines when we are made aware of our delivery date.

We would suggest that you enquire through the mass vaccination centre for a 3rd dose by contacting 119.

Oh well! Onwards and upwards 😃

[piggie50]

Okay…. I’ve called 119 they know nothing of a third primary dose. I read part of the JVCI letter and he said we are not doing that, there is no third primary vaccine.

Guess I’ll just hibernate for the winter!

[amhann in reply to piggie50]

Thanks for letting us know - am guessing we’ve probably got no chance then! (mmm not sure why I thought we might - wishful thinking) - I’ll still pass on the letter (if only to make a point) xxx

[CalL1981]

I received a text message on Friday saying I could attend a walk in clinic for a third vaccine. Perhaps try your luck with a walk in clinic.