3rd dose COVID vaccination for MPN patients - MPN Voice

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3rd dose COVID vaccination for MPN patients

Mazcd profile image
MazcdPartnerMPNVoice
44 Replies

PLEASE NOTE WE HAVE UPDATED THIS INFORMATION, SEE FURTHER DOWN THE PAGE AND ALSO THE SEPARATE POST healthunlocked.com/mpnvoice...

As you will be aware the government has launched a 3rd dose of COVID vaccination for selected patients who may not have mounted an adequate response to the first two doses. Separately adults over 50 years and those in original vaccine groups 1-9 are to be offered a so-called booster dose. The type of vaccine (Pfizer or Moderna) will be the same but the terminology is different and the current plan seems to be that those who had a 3rd dose will be offered a booster 6 months later.

The clinician community advising MPN Voice have discussed and agreed that patients with MPN of any subtype regardless of whether they are treated or not, should seek and accept a 3rd dose COVID vaccine. There is no current evidence that any particular type of vaccine (eg Pfizer or Moderna) is better.

MPN Voice has produced a MPN specific letter which you can use in conversation with your GP, and NHS COVID vaccination booking to obtain a 3rd dose vaccine.

You can download and print a copy of the letter here

mpnvoice.org.uk/wp-content/...

Working with Blood Cancer UK and The British Society of Haematology, a similar but not MPN specific document has been produced which you can find here

mpnvoice.org.uk/wp-content/...

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44 Replies
Cakeface profile image
Cakeface

Thank you for the information but I'm unclear, do we contact our surgery to arrange a booster immediately, or is it the same as all over 50's inasmuch that it has to be 6 months after the second dose?

Mazcd profile image
MazcdPartnerMPNVoice in reply to Cakeface

Hi Cakeface, 3rd dose is minimum 8 weeks after 2nd and will be followed by a booster.

Contact your surgery or local vaccine centre eg for Guy's and St Thomas' local 3rd dose patients can walk in.

Hughley profile image
Hughley

Thank you for that information Maz I have rang the GP and the receptionist informed me that they are in the process of sending out texts to everyone over 80 and they are not aware of a third jab and even though I explained about our conditions I was told we will have to wait our turn I forwarded them your e mail so will just have to wait and see. My consultant who I had had my appointment phone call with also advised me to contact the GP to arrange the third jab.

azaelea profile image
azaelea

Thank you for this information Maz. I’m at a loss to know what I should do. I have already made an appointment for a booster dose through the NHS , according to their letter I received. I enquired at my GP’s but they are not taking part in the Vaccine programme. My appointment is on Monday 4th October at a Pharmacy nearest to me, but only for booster. Should I take this letter to the Pharmacy appointment? Regards, Fran

Edinburgh1953 profile image
Edinburgh1953

The type of vaccine (Pfizer or Moderna) will be the same but the terminology is different and the current plan seems to be that those who had a 3rd dose will be offered a booster 6 months later.

This paragraph is somewhat confusing me with the wording ‘those who had a 3rd dose’. Should it not read 2nd dose?

CurlyKale profile image
CurlyKale in reply to Edinburgh1953

I think it is saying that we should get a 'third dose', which is different to a booster. Then 6 months after having the third dose, we should get the booster.Haven't heard of this at all, so I suspect if I phone the GP they will think I mean booster!

Mazcd profile image
MazcdPartnerMPNVoice in reply to Edinburgh1953

hi Edinburgh1953, to clarify: 3rd dose is minimum 8 weeks after 2nd and will be followed by a booster.

Contact your surgery or local vaccine centre eg for Guy's and St Thomas' local 3rd dose patients can walk in

Cindy12 profile image
Cindy12

As an over 80, I have already had the booster. I suppose this will mean we miss out on the 3rd dose.

Helpatlast profile image
Helpatlast

Thanks Maz to you and all involved in providing such a clear and concise letter for us all to use to obtain the third primary dose which should be a big help! I will give it a try at the weekend with the city vaccination centre - Tehe if I can find some petrol before then 🤣🤣🙄🙄 Many thanks again to MPN Voice for this

piggie50 profile image
piggie50

I got nowhere with my GP or the vaccination centre regarding a primary third dose. I even sent the JVCI letters. I have just received a text asking me to book the booster, I have booked that for Saturday. I understand the actual dose is the same, so my thinking is better to get a booster than not be called for the 3rd dose. I’ll worry about the additional booster in 6 months time when I get there.

jointpain profile image
jointpain

I had my flu jab on Saturday, and asked the GP when my wife would get her third covid jab, he said that she would be contacted by the Welsh government as to when and were she will get it. He also said that the medical centre wasn't doing them anymore. So there is no point in contacting anyone over it.

Fizzydog profile image
Fizzydog in reply to jointpain

I've contacted the Welsh Mass Vaccination centre today and they require an email from our Haematologist to book this 3rd vaccine for us. I've emailed my Haematologist department asking for them to email the mass vaccination centre approving my 3rd vaccination. I stressed that I needed it as I'm a front line police officer and I attached the letters from both MPN Voice and Blood Cancer UK. Fingers crossed they get in contact and agree it soon.

katiewalsh profile image
katiewalsh

Hi Maz, thank you for this but I think we all need clarification on one point. Should we wait a certain length of time before getting the 3rd shot? Some doctors say 6 months after your second shot. Can you please get the answer for us so we know what to do? The letters don’t tell us. Thanks, katie

Helpatlast profile image
Helpatlast in reply to katiewalsh

This is a third primary dose and can be had any time after eight weeks from your second dose, which for most of us is a long time ago now - the six month wait is just for the booster programme - so once you have had a third primary dose it's then a six month wait before we would get a booster.

katiewalsh profile image
katiewalsh in reply to Helpatlast

Hi. Can you please tell us which vaccine you had before? As you see below, some are told weeks and others told many months. Thanks

Helpatlast profile image
Helpatlast in reply to katiewalsh

The type of vaccine given previously or no makes no difference on the time period We are being offered a third primary vaccine as blood cancer patients who may well have had no immune reaction from the first two - it is hoped a third one may assist a reaction - the third dose could have been given from eight weeks after our second dose, but as for most of us the second one was some time ago invariably it will be much longer gap - the importance is to have the third vaccine to try and assist some immune reaction and hence protection

For the booster programme going out to all the pollution it is a six month gap from their second dose - this is because the general population will have had a good immune response from their two vaccines, will have good protection all these months so able to lead a fairly normal life and now they are being offered a booster to that reaction to tide them over the winter on protection - hence six months gap in between to assist now as we head into winter and potentially more Covid infection. It is hoped we will get a booster ourselves in six months from our third primary dose, in total four vaccines

Mazcd profile image
MazcdPartnerMPNVoice in reply to katiewalsh

Hi Katie, to clarify: 3rd dose is minimum 8 weeks after 2nd and will be followed by a booster

Contact your surgery or local vaccine centre eg for Guy's and St Thomas' local 3rd dose patients can walk in

katiewalsh profile image
katiewalsh in reply to Mazcd

Thank you Maz. Hope you’re well.

Joerp profile image
Joerp

I’ve been contacted and received my 3rd dose / booster (Pfizer like my first two) at guys a couple of days shy of 6 months from my second. I was under the impression all doses would be Pfizer no matter what you had before as it had been shown it still would boost antibodies and may even give a better all round protection. I think if you got an early slot last time you should automatically be contacted. I’m 42 so not in any age group. Just on the shielding list I guess.

Joerp profile image
Joerp

To clarify I have just re-read the message offering me the extra vaccine and it very clearly says 3rd Dose and only says it needs to be “at least 8 weeks after 2 lbs dose” so not the 6 months for a booster I guess. It also says it will be a mRNA type not just Pfizer. It also says it is part of the “primary course of vaccinations separate to a booster”.

So I guess I got a 3rd dose (albeit almost 6 months after second) not a booster and I will be Boosted in 6 months.

katiewalsh profile image
katiewalsh in reply to Joerp

Can you please tell us what brand your original dose was? Thanks

katiewalsh profile image
katiewalsh

Maz, as you can see above, there’s conflicting information on when to get a third dose so I’d appreciate your letting us know the answer. Including if the waiting period depends on which of the brands you received. Thanks Katie

Mazcd profile image
MazcdPartnerMPNVoice in reply to katiewalsh

hi Katie, I have replied further up the thread. Maz

DJK12 profile image
DJK12 in reply to katiewalsh

NHS Scotland sent out a leaflet with the appointment for 'a third dose for people with a weakened immune system ' and states 'The third dose should be given at least eight weeks after your second dose....'.. No differentiation mentioned for different brands.

Further on it says 'Advice on whether people with a severely weakened immune system will need a further booster dose after this third dose will be confirmed later'.

I have taken from this that although what we actually get given is the same whether third dose/booster it is important to differentiate between the two timing wise and also to ensure we get picked up for a potential future booster. My husband (non mpn) wasn't given his booster with his flu jab as it was only 5 months from his second dose and as things stand I presume he won't get another booster 6 months from when he does.

I understood that we are all, whether third dose/booster, getting Pfizer or Moderna. I had AZ for first two. Also anecdotal evidence from large vaccination centre I'm due to go to is that they are giving Pfizer.

Hope this is helpful

Diana

DJK12 profile image
DJK12 in reply to DJK12

I see from latest update we mustn't have Moderna as third dose.

Joerp profile image
Joerp

Hi Katie.My third dose was Pfizer like my first two. I think the only reason I was 6 months from my second dose was that they have only just just started rolling out the third dose. As I said in my invitation it stated “at least 8 weeks from 2nd dose” so if you only had your 2nd dose 8 weeks ago you would still be eligible. However I assume most people being offered a third dose were in the early groups anyway so the gap will be much longer.

MCW22 profile image
MCW22

Is it just me? I can't get either of those links to work. I had a haematology telephone appointment 12 days ago and the Dr had never heard of the 3rd primary dose. He looked at the letter on blood cancer UK whilst talking to me and said he would mention it in his letter to my Gp. I've heard nothing since. Not even got my copy of his letter, which I always ask for

Inclement profile image
Inclement

Our local vaccination choice for booster will be either Moderna or Pfizer, but understand the dosage for the Moderna as booster will be half the full dose, so will the 3rd dose be the full amount?

And I am also finding I can't open either attachment for some reason?

MWxxxx profile image
MWxxxx

Thank you. It is useful to have the letter for clarification however, GP surgeries do not seem to know anything about it. I had already sent the blood cancer letter to my surgery and got a standard response. Haematology have told me that we have to wait for an invite letter addressed to the individual and then you can attend a drop in, as long as you have the invite and photo ID. The problem seems to be getting the invitation. No one seems to know where they come from and no one wants to enter into a discussion about it. I am now past 6 months (let alone 8 weeks) from my second vaccine and no sign of an invite for my 3rd or booster.

champ30 profile image
champ30

Thank you Maz...I was unaware of this. I will be in touch with my practice.

Devilgirl profile image
Devilgirl

I've heard nothing regarding the 3rd vaccine so have just called my GP Surgery who have said they are still discussing whether or not the 3rd vaccine should be given to anyone & they are currently looking at just giving the booster. Don't know where to turn now.

Hughley profile image
Hughley

I sent your letter to our GP but have just had a reply saying that I had my 2nd vaccine on April 8th and they are not allowed to do another one for 6 months which will then be a booster it’s so frustrating.

Mazcd profile image
MazcdPartnerMPNVoice

PLEASE EVERYONE NOTE: WE HAVE UPDATED OUR ADVICE WE ISSUED YESTERDAY:

UPDATE TO OUR ADVICE RE: 3rd dose COVID vaccination for MPN patients

Further to the advice we issued on 30th September regarding the 3rd dose COVID vaccination for people with MPNs. We are aware that many people are reporting issues with the rollout of the 3rd dose and that some GPs or treating teams haven’t been made aware that they should be giving people with blood cancer, which includes MPNs, a 3rd dose, and that they are struggling. You can contact your GP and your haematology team asking them to book you in for a 3rd dose, showing them the letters issued by MPN Voice and Blood Cancer UK (which includes a letter from NHS England).

See links below to download and print these letters.

It is really important that if you are called for booster dose and are offered the Moderna vaccine, you should NOT get that instead of your 3rd dose, this is because the Moderna vaccine is given as a booster dose, there is less of the vaccine in the vial than when it is given as a 3rd dose for the immunocompromised, you should elect to have the Pfizer vaccine. Blood Cancer UK have issued advice which we advise you read, click here

bloodcancer.org.uk/news/wha...

You can download and print the letters using the links below:

MPN Voice letter mpnvoice.org.uk/wp-content/...

Blood Cancer UK letter mpnvoice.org.uk/wp-content/...

CalL1981 profile image
CalL1981 in reply to Mazcd

Thank you for this letter. I went today to have my third vaccine. There was some confusion about whether it was a booster or not as it was almost three months since my second dose and not 6. In the end they agreed I should have the third vaccine but I think it wouldn’t have happened without this letter.

swimswam profile image
swimswam

I contacted my GP yesterday through their website explaining I have ET on Pegasys together with a copy of letter. Was given an automatic case number. Now received a standard reply from their admin saying case had been closed, no further action needed 🤷‍♀️

Bluesloth1 profile image
Bluesloth1

Hi Maz,

Thank you so much. Just had my 3rd primary. MPN Voice and Blood Cancer UK’s letters were so helpful. So grateful for all you do. Good luck to everyone. Xx

jointpain profile image
jointpain

Hi spent a long time today emailing my wife's consultant here in Wales, he knew nothing about third dose, just thought it was the booster, seemed happy to be educated, though asked me to see what the GP was going to do. The GP isn't doing anything, his rottweiler wasn't being told anything, never read the attachment to the email, and said they were only giving the booster to care homes. Would not listen to the fact the booster is different and the third vaccine is due after eight weeks. Tried calling the mass vaccination centre of North Wales, no body to actually talk with. Just numbers to press when I eventually got through. Then the phone cuts off.Re emailed the consultant hematologist and left the ball with him.

Do not get ill in North Wales they are not interested, they can live with the daily death rate from covid, as can this government, but if my wife dies from contracting this virus I cannot.

mhos61 profile image
mhos61 in reply to jointpain

Isn’t it strange that so many Consultants/GPs seem to be totally unaware of the JCVI recommendations for a ‘Third Primary Dose’ for their severely immunocompromised patients’?

I have posted the link below previously, as have others, but in case you haven’t seen it, it maybe helpful for your wife’s Consultant to peruse, as it clearly states Consultants have been asked to identify their severely immunocompromised patients. Look under ‘action now required.’

england.nhs.uk/coronavirus/...

mhos61 profile image
mhos61

The latest updated letter (30 September) suggests GP Practices should have identified their patients who qualify for a third Primary Dose by the 11 October!I think many of us will have had the booster by then🤷🏽‍♀️

I do feel for you trying to navigate your way through the Welsh NHS System. You are a terrific advocate for your wife. I hope you manage to secure what your wife is clearly entitled to.

janetmcg profile image
janetmcg

Hi MazI have been pushed from pillar to post trying to sort out this third primary dose!

Handed the letters to the GPs and they said we don’t do them phone 119. 119 said they don’t do them GPs do. GPs said they would look into it and cam back this morning saying Hospital specialists do it (‘rheumatology are at Nottingham’) and you have to wait 6 months before you have this dose and could not tell me if or when I would have a booster. I think she thought it is a booster, CONFUSED to say the least. My 6 months is up on 2nd November.

Can you give me any advice on what I do next. (I have messaged my cancer nurse.)

Mazcd profile image
MazcdPartnerMPNVoice in reply to janetmcg

Hi Janet, I am sorry you are having problems, hopefully your specialist nurse at the haematology department will be able to help, let me know what advice she gives. Best wishes, Maz

bruddery profile image
bruddery

Hi Maz just managed to read up on this and I have a general query (it’s probably been asked already!). I’m in Ireland and have been called to a vaccination centre for a covid vaccine, they don’t say whether it’s a third dose or a booster ? I have tried reading up on our HSE site and it seems that it’s either Moderna or Pfizer. I previously had two Astra zeneca jabs. Is there any guidance on which of these are the best to have with Astra zeneca and I have seen odd pieces on half vaccines, all very confusing. Anyway have you any ideas? Thanks Janice

Mazcd profile image
MazcdPartnerMPNVoice in reply to bruddery

Hi Janice, the best thing you can do is ask them when you get there to confirm which brand they are using and what the dose in the vial is, as per below, and please note the comment that the NHS will start using Moderna for booster doses in the next few weeks, this will be different for Ireland, so best to ask the people in the vaccination centre.

If you are struggling to get your third primary dose, but you are invited for a booster dose (which may be happen if you’re over 50 or have another health condition), you should take it. But ask the person giving it to you what vaccine you're having and what dose is being given. This is because if Moderna is being used as a booster in the general population, it is given as a half dose, and people with blood cancer should be given a full dose. You should check this with the person giving you the vaccine. Pfizer boosters are always given as a full dose. We have been told that Moderna is not being used for booster doses at the moment so it should not be an issue at the moment, but we expect the NHS to start using them for booster doses in the next few weeks.

bruddery profile image
bruddery

Many thanks Maz. Janice

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