Hi has anyone with ET been invited for a 4th vaccine? A friend of mine has been invited for a 4th covid jab because of medication that compromises her immune system - I’m on permanent chemo but I’ve not heard anything about this ?
Hi @desmum I haven’t got ET, but another blood cancer, and I have not heard either, but I was at my GP’s today for something else and they have booked me in for a 4th/booster Covid vaccine clinic on the 20th.
I have heard of others getting their 4th/booster via their hospitals.
I have heard of others getting letters from their GP’s to state their eligibility and need and going to a walk in clinic.
Others have got success via ringing 119.
Others have taken their Gov letter of offering them a 3rd vaccine to show their eligibility
I believe the 4th/booster vaccine will not be offered until 3 months after a persons 3rd.
You might also like to ring the Blood Cancer UK support line for guidance as I am certainly not an expert on the subject, good luck.
Hello @Desmum. My experience has been that I haven’t been invited for my fourth vaccination (my third one was arranged by the hospital early in October) so I found the nearest walk-in vaccination centre and went yesterday. I had to show them a letter from my haematologist confirming my diagnosis, my NHS number and a box of my haematology medication. Everyone was very kind and after quite a bit of checking all the information I gave them, I was given my fourth vaccination. Very grateful. It seems we have to be proactive for this fourth one rather than waiting to be invited. Hope this helps you and you are successful. Warm wishes. Willow
Hi @desmum Hope you’re doing okay.
Adults and children aged 12 and over who are severely immunosuppressed should have three primary doses of the covid vaccine, followed by a booster dose (a fourth dose). This advice covers the whole of the UK.
This is different from the rest of the population, who will have just two primary doses of the vaccine followed by a booster. To summarise:
People who are immunosuppressed (including people with blood cancer) should have:
- 3 primary doses of the vaccine
- 1 booster dose, 3 months after their third primary dose.
The rest of the population will have:
- 2 primary doses of the vaccine
- 1 booster dose, 3 months after their second primary dose.
You might find our webpage here useful to read through but if you want to talk it through please do give us a call on 0808 2080 888 - How to book a covid vaccine if you have blood cancer | Blood Cancer UK
This blog might also be useful as it contains some frequently asked questions - Why am I being invited for another Covid vaccine? - Third doses and boosters | Blood Cancer UK
Well done @Willow but we really shouldn’t have to lug a suitcase on wheels of our medications as proof !!!
Look after and be kind to yourself
So I thought I would my experience of trying to get the 4th vaccine. So on Saturday armed with all the leaflets from blood cancer website and my letters from consultant proving I had non Hodgkin lymphoma I went to a walk in centre. Evidently I am not quite cancerous enough as I am not get any treatment as I am on watch and wait! I showed her the information from blood cancer website and the JCVI but not no she didn’t have non Hoskins on her list. She did however have indolent lymphoma and when I explained that’s it her reply was it’s different. So she gave me a letter to take to my Gp asking for proof that I was entitled to the golden 4th vaccine. Having just come back from the GP I have been told no go have nothing to do with it. So everyone who has been before me I understand your frustration. Somehow I need to try and contact my consultant secretary and ask them to write the letter or wait until my next appointment which is on 7 March.It really should not be this difficult should it.
Hi, I poked my GP about it and then got a text message saying to turn up at a vaccine centre without an appointment and tell them I came for my fourth vaccine which happen last Saturday. The were no fuss. Just make sure you have your NHS numbers with you.
My immune system has has been compromised when I was treated for leukaemia 25 years ago. Currently I am been treated for bladder cancer.
Ask your GP if you are on the NHS vulnerable list.
Hi @Mandi713 and @Normand_Howison
@Mandi713 what a battle again just to get our 4th vaccine.
Yes, perhaps a letter from your consultant might be the way forward, please let us know how you get on.
@Normand_Howison you really show how it is a 'postcode lottery. We believe that the Clinically Extremely Vulnerable group have now been reclassed as ‘High Risk Covid’, which I cannot comprehend why and why we were not informed. I have reams of NHS paperwork till in my case last autumn.
Good luck @Mandi713
Anyone else want to contribute to this subject?
Hi, my consultant wrote to my GP surgery and asked them to arrange a 4th booster.
Hope this helps x
Hi @moonchild a great big welcome and you have already helped others by sharing your experiences, thank you.
I really look forward to hearing more about you, look after yourself.
Thank you Erica I have had ET for a long time, since 1996 to be precise. Always interesting to read about all the different experiences and issues on here and follow the latest updates and info which are so helpful.
What might be interesting to others is that following my second jab and then my third, my consultant arranged antibody tests for me. Both showed zero antibodies which of course was a big concern.
I am lucky enough to be able to work from home and avoid busy places and situations like we all have to. I decided on Christmas day I was going to go out with the family for lunch, we had a secluded alcove and were all very careful, but yes you’ve guessed it, I got Covid. Several members of the family were ill just after Christmas and tested positive. My husband and myself tested each day and were negative. Then I got what I can only say was like a horrible cold, felt generally crap and exhausted , other half got the same. Still testing negative. After the third day we got a new batch of tests and pow! Positive immediately. All I can think is that the old tests had gone out of date. By this point I had a very gruff voice, a chesty cough , cold symptoms and extreme tiredness. But on the plus side my body fought the dreaded virus off and I am doing ok . With no antibodies I am beyond pleased. I think if my tests had been positive at the start I would have been frantic but by the time I tested positive I was starting to improve.
I know this won’t be the same for everyone and my goodness the clinically vulnerable need to be recognised and taken care of NOW. But maybe its just a little bit of positivity amongst all the gloom.
I will have my 4th booster at some point, 28 days after my positive test , no idea what will happen after that, but will let you know x
Hi @moonchild gosh I bet things were very different for you in 1996, I was diagnosed in 2003 and I know they were for me.
I had no antibodies after my second vaccine and I haven’t been tested since.
I await my 4th/booster vaccine next week.
I am basically retired and what Sainsburys don’t deliver we do without.
My son, who is quite healthy tested positive just before Christmas and had similar symptoms to you.
We have only seen family once in the last 20mths as some of them have health problems and neither of us wanted to unknowingly give Covid to the other.
I don’t know about you but I can still replay the day I was diagnosed as if it were yesterday and I still get anxious before and during all medical tests and appointments.
Look after yourself and I think we are so lucky to have Blood Cancer UK campaigning for us and supporting us.
It’s crazy that this is so inconsistent around the country and people like us should have to prove our case for getting a vaccine. I really hope that this gets sorted out for all of you and like @Erica I’m grateful for the work that Blood Cancer UK do on our behalf and helping us to make sense of it all.
Hi I have Chronic lymphocytic leukaemia (CLL) & have had my 4th vaccination 2 wks ago. When I went for what I thought was my booster vaccination in Oct 21 at my doctors. I was told that this was my 3rd vaccination & that I needed a 4th vaccination which would be my booster, they weren’t sure if I would have it in 8 weeks or 6 months. I rang my doctors before Christmas & they asked my to go to the drop in service they provided after Christmas. Which I did on the 6th Jan 22, so I had a gap of 3 months between my 3rd & 4th vaccinations. All 4 of my vaccinations have been the Pfizer vaccination. I’m currently 3/4 the way through my targeted chemo treatment, I finish my treatment in April. I hope this helps you !
Hi Desmum I have ET too and had my fourth dose last week. No the invite didn’t come thro - I think much of the problem has been an IT one of the triggers for invites not working as at the time of the third doses the general IT couldn’t record it as a third dose, although I know the vaccine centre did a lot of individual notes for me - but if the general coding doesn’t get updated, we don’t get our invite
Anyway after my three months were up I emailed my GP surgery explained I had no 3 at vaccine centre, etc etc now due fourth, and within five minutes I had a call booking me without any hesitation.
So try your GP surgery if it is usually a good one
If not all the walk in centres are doing boosters for immunosuppressed
Or contact your ET consultants secretary and ask for a letter confirming you should be having it - MPN Voice have confirmed all MPN patients whether or not on treatment should have three primes and the booster
Let us know how you get on,
Like the 3rd jab, no. 4 is also turning out to be a bureaucratic nightmare. Phoned 119 as outlined in your response and spoke to a guy that did not know much. I also spoke to my local hospital where I had jab no. 3.
Both say that I should write to my GP and get a letter saying I have to have jab no. 4. The hospital nurse says my 3rd vaccination is down as a booster, but will be altered when I get a letter.
I have never received a letter about my condition from my GP or my Consultant, just a cc letter that my Consultant sent to my GP a few months after Covid started.
It is a month to go and hopefully I may even get a letter by then from my surgery, but not holding my breath. I only hope that what is sent to me is correct and is accepted by the hospital without further problems.
I was going to say that this government could not organise a p***-up at brewery, but that appears to be the only thing they can do, or at least at no. 10!!!
Take care xxxx
I have a similar situation but it appears they marked my 3rd primary as the booster so i have had to send a letter to our practice explaining i should have had a 4th jab as the booster, from my experience all the way with these jabs you have to be on the ball yourself and be prepared to explain to people where they go wrong
I have ET and I’m on Hydroxy and I had my 4th vaccine today. It was arranged by my local hospital, who called me before Christmas to organise that I had it 3 months after my 3rd Vaccine. My haematology department have been really good and seem on top of things after a bit of a shaky start with regard to Covid and MPN’s. It might be worth calling your haemo department and seeing if they can push things forward for you. Good luck!
So sorry to hear of your experience - I eventually got a letter from my doctor after making enquiries and have now had my 4th - he said it should have been generated automatically but the system is in a mess - so if you believe you’re entitled to it don’t give up
Thanks Jellybean - I eventually got my 4th jab last Saturday