I have ET and wondered what everyone’s experience of being called up for jabs was like.
I had 3rd shot in November but haven’t had an invitation for the 4th yet. I asked the GP nurse when I went for regular blood test a few weeks ago, and she said they don’t send invites anymore, but the NHS will contact me direct (usually by text). I don’t think ET is considered an “extremely vulnerable” condition in Norfolk, I just wondered what everyone else’s experience was.
And some good news? After being diagnosed in September 2020 with platelets at 1176, at last weeks consult I’m told I’m now 436 and within normal range! Still have to take the tablets, but happy to be back in the green zone.
Hi@Shell33,Good morning,in response to your?I have MGUS not considered to be immunosupressed yet I was invited for a booster (4th)in April,I must be on NHS Scotland radar ,maybe its different in England.Thats good to hear you are back in the green zone though.
Stay safe
Bannanacake
Hi @Shell33,
What brilliant news about your blood results!! I am delighted for you.
Thankyou for asking this as I am certain you are not alone in your confusion with the vaccines. Hopefully our information can help but should you feel it easier to talk it through please do just contact our support line on 0808 2080 888 and we can talk it all through with you.
As you have a blood cancer you are entitled to a further vaccine and indeed it is likely you will be offered all available additional boosters, as your condition renders you as immunocompromised.
Please do have a look through our vaccine webpage here which explains more and shows a infographic of time lines in quite simple terms of when vaccines should be accessed.
Also do not worry that if you feel you have ‘missed’ the 4th, the most important thing is to get a booster booked now. We urge anyone to access a spring booster if it has been at least 3 months ( 91days) since their last vaccine.
Our webpages will explain how you can book this ( if in England) and also do note that there is a cut off for accessing the spring booster, which is next week ( 30th June)- so it is best to try and schedule this is soon.
Again should you wish to clarify anything, our phone lines are open until 4pm today- 0808 2080 888.
I too am confused about the entitlement to Covid Vaccines. I have igM Mugus and have had two primary doses and one booster six months ago. I have queried this with my Haematologist and she said I am not immunocompromised and are not entitled, but at the same advises getting a booster if I can (how would I do this?). Myeloma UK have a letter on their website saying MGUS patients are entitled to a third primary dose. Has this advice been superceded?
Hi Shell33,
I booked an appointment last night via 119 and had the booster this morning. I was asked why I was eligible and told them I had mgus amd explained it was a blood condition.
I had with me hospital letters and copies of page 25 of the Green book etc., but didn’t need to produce it. Hope this helps. Helen
I have a Non Hodgkin’s Lymphoma called Mycosis Fungoides and I have had my 4th booster a few weeks ago and the NHS sent me an email to book it.It wasn’t done at the GP 's but at a disused shop that the people who do the jabs had hired out.The first was done in a museum the NHS had hired during the pandemic (a good use as people couldn’t go to museums then!), the second and third more mundanely at a GP’s and this one a recently closed down electrical goods store!As I recall there where two categories of illness to get the jabs more urgently if you where under 70.Group 4, which I was, which was where the illness might be likely to result in death due to the underlying condition(s) and Group 6,where very severe illness might develop due to the underlying condition.As I understood it active cancer,no matter what type,was group 4 at the time but people in remission might be group 6?I think also that the remission bit only applied to Carcinoma and Sarcoma in other words solid tumour cancers and blood cancers is always regarded as active even if it’s not up to much mischief at the time which is why people who have had/have lymphoma, myeloma and leukemia can’t donate blood or organs as long as they live.
Hi I went through a bone marrow transplant 25 years ago and since I been on the list of the vulnerable group. Since the end of 2020 I have been treating for bladder cancer and I am currently on immunotherapy. I had my fourth vaccine in early January this year after inquiring with my GP. Few weeks ago I was invited by the NHS for a fifth vaccine which I had.
I live in Hampshire.
I hope this help.
Great to hear that you have had your 5th vaccine @Normand_Howison
You have really been going through it again, with bladder cancer this time, since the end of 2020, and right in the middle of Covid times as well.
Take lots of special care of yourself and please keep posting
Sadly, the situation does still seem to be pretty chaotic. Being well the wrong side of 70, with ET, I’d been pestering various bits of the NHS about 4th jag/booster, with little apparent result other than “you’ll get a letter”. Wife got invitation for her’s, but I’d still not had any letter/email or anything, so gathered hospital letters and BGUK printouts, marched in to the local vaccination centre all ready for a good old row. Was waved through to the person with the computer, “Oh, yes, you’re eligible, would you like it now?”.
It just seems to be that “the system” is still in chaos. Just waiting to see what happens about the 5th/Autumn/whatever one.
Hi Michelle
I’ve had ET for about 6 years - originally platelet count of over 1,100, quickly reduced to under 400, currently 437.
I’m over 75 and live in London. Had my 4th jab in February this year and are being chased by the NHS to have my spring booster jab ie 5th jab. I’ve booked it at a walk in centre for a couple of weeks time.
I assume my age as well as ET brought this about.
Ray
Hey everyone, just wanted to say thanks again for all the info you shared. I’ve just had my 4th jab! When asked I just said I have a blood cancer and the check in person didn’t ask for any further info or documentation. I’m all jabbed up now!
Take care everyone.
I have Chronic lymphocytic leukaemia (CLL). Diagnosed in December 2021 but consultant referred me back to GP. GP’s not proactive with Chronic lymphocytic leukaemia (CLL) and to get 4th covid vaccine I went on line and booked it through NHS website. There were no questions as to whether I was eligible at appointment.
I now have Covid so waiting to see if NHS get back to me in 24 hours, otherwise advice is to contact GPs. As I am not with a consultant now, I must rely on GP ( at least the new one talks to me,)
Hi @Lulu1221 a great big welcome to our forum and my Haematologist referred me back to my GP to monitor my Chronic lymphocytic leukaemia (CLL) with the proviso that if anything went amiss that I would be fast tracked back to the Haematologist. I felt abandoned at the time.
We are here for you and if you want to ask me anything about my experiences please do not hesitate and if you would like to talk to someone the Blood Cancer UK support line is there for you
It cannot have been easy for you being diagnosed during Covid times.
I am sorry that you now have Covid and I hope someone gats back to you soon
Look after yourself and be kind to yourself…
My husband must be ‘lucky’ as he’s always been seen in clinic & since Covid by telephone follow ups 3-4 monthly. He has Chronic lymphocytic leukaemia (CLL) & ET, he is now followed up only by ET clinic as he’s on Hydroxy. for ET & only W&W for Chronic lymphocytic leukaemia (CLL). Diagnose about 11 years ago. He’s had x5 vaccinations but we have had to chase them a bit, I think he was one of the people whose clinical code for Chronic lymphocytic leukaemia (CLL) got missed off the IT system. Unfortunately he hasn’t responded to them and still has no detectable ABs. We live in an area that has a 24/7 Haematology Specialist Nurse on call so I’m hopeful that should he ever test +ve for Covid it won’t matter if it’s the w/e. I really don’t want my optimism to be put to the test though.
Hi @Lulu1221, thank you for sharing, I’m sorry to hear that you’ve contracted covid, and your Chronic lymphocytic leukaemia (CLL) diagnosis is quite recent still- may I ask how you’re doing?
I was just wondering whether you’ve heard back from the NHS regarding your positive covid test as yet? In case it’s useful at all, our website has information about covid antibody and antiviral treatments for people with blood cancer, and this includes a summary of the process of getting an assessment to determine if you’re eligible for these treatments, as well as the escalation process if you haven’t heard back. Please do let us know if you’re having any difficulties or haven’t heard from the NHS as yet. In case it’s helpful at all, you can also call us on our support line number (0808 2080 888).
Hi @LizB003 a great big welcome to our forum and I count myself as a very lucky girl.
I have had Chronic lymphocytic leukaemia (CLL), on watch and wait, since 2003.
I have had my 5 vaccines and probably have few antibodies, but I am lucky enough not to have had Covid.
My consultant referred my care back to my GP about 5 yrs ago.
My luck would be to be diagnosed late on a Friday afternoon as that is when I always get infections !!!
How are you and your husband?
I look forward to hearing more about you both.
Look after yourselves
