Hi all,
I was diagnosed Chronic lymphocytic leukaemia (CLL) at the beginning of the year and I am currently at 0 and the rai scale. I just wanted to get opinions on what we should be doing as a blood cancer community regarding 5th covid boosters. I had my 4th jab on 1 March 2022 and booked online for my 5th booster which I went in for today. When I got the there, I was utterly humiliated in front of a pharmacy full of people with the pharmacist going into detail about my condition and insisting that I am not eligible for this as I am āonly 0ā on the scale and not receiving any chemo. They also insisted that I should be called by my GP for this and should prove this to them by producing an invite letter from my GP (I did take a hospital letter as prove of my Chronic lymphocytic leukaemia (CLL) which they informed me did not make me eligible). I have attempted to get advice from my GP about this, but they have referred me to the covid phone number and said it is a matter for them to deal with.
I did direct the pharmacist to the below link which he read fully, and informed me that it was a āgreyā article.
In the end I just left and was followed out by a complete stranger who had overheard everything, who asked if she could give me a hug as this had been a difficult conversation for me.
I am very upset by this experience and wonder if I have done something wrong and if anyone else has had similar experience, and what they have done afterwards.
I donāt feel this is correct and there seems to be confusion in the medical profession about this.
Thanks x
Hi @Vicki. Iām so sorry you had that you had to go through that today. It really seems to vary across the country. Iāve read about lots of positive experiences on here but also lots experiencing the same difficulties as you. I also went armed with documents and wasnāt asked for anything. I think it would be really useful to give the helpline a call. They will be able to advise on next steps. I know a lot of people have contacted them regarding the 5th jab.
How lovely that you were offered a hug. I can imagine you really needed it. Iām sending a huge virtual one to.
Please keep us updated on how you get on.
Here is the support line number.
Oh @Vicki I want to give you a (virtual) hug as well, what an absolutely horrible experience to go through, you must be so upset and I would have cried buckets when I got home.
At least professionally the pharmacist should have taken you somewhere private to discussed the situation.
I also have Chronic lymphocytic leukaemia (CLL) and I have been on watch and wait for 18 yrs and I had my 5th vaccine at my GPās when they were holding a clinic. @Nichola75 has given you good advice and you take lots of care of yourself xx
I was not aware of RAI scale with Chronic lymphocytic leukaemia (CLL) but what I would say is with a Chronic lymphocytic leukaemia (CLL) diagnosis, and you having 4 vaccinations already there is a recognised immune system deficiency so to be petty and jobsworth regarding the 5th vaccine is poor.
Hi my 76 year old dad was in hospital for 3 months then spent 2 weeks in rehabilitation to help him walk and build his strength up after having covid , he finally came home a month ago and he saw is Chronic lymphocytic leukaemia (CLL) team who were very pleased with him and said they would put an hold on chemo at the moment as the blood tests they did showed improvement , he was sent to have is 5 th jab 2 weeks ago he was fine after it then on Sunday he felt weak and tired by Tuesday he was confused couldnāt get an appointment with his gp so took him to A and E he as been admitted on a covid ward after testing positive again !!! 3 months after being seriously Poorly with it , he seems to be responding well to the antibiotics on a drip and fluid drip Iām just praying he as it mild, Iām not sure if the 2nd time you catch covid if the symptoms are milder I really do hope so itās such a shame he needs a break .
Oh @Ac28 Covid seems to know no boundaries and it is not fair that some people get it more than once and others not at all.
I am so glad that you took your dad to A&E, good thinking.
Yes, your dad needs a break and so do you, he is being looked after so please look after yourself as well.
Gosh a that has been a rollercoaster of a few months! Iām really hoping that this time around isnāt as bad for him. He is in the right place. I hope you are looking after yourself to x
I had similar with my 4th but checked with Blood Cancer UK and eventually got an apology. However, I did get an uncomfortable reaction from my 4th Moderna (Iām told I can only call it serious if I go into anaphylactic shock or similar). So I paid for an antibody test which was 3 weeks after 4th and it was highest value. Took an antibody test again when they called me for my 5th. Still in highest range but GP advised I had it but avoided Moderna. Had Pfizer and again had uncomfortable reaction., similar to Moderna namely wiped out for about 48 hours then rash around neck. It has made me wonder whether some of the strategies for those with more developed blood cancer are not needed by some of us. As always Blood Cancer UK were so helpful with prompt informed replies when I was initially refused my 4th. It isnāt just the embarassment in the vaccine venue, it is the fact that you start to feel very confused by contradictory advice at a time it is hard to see/ access your GP. So you may have had an escape from a reaction? But I hope we get some clearer advice soon. Not sure why there isnāt more research about our reactions to vaccines if we are to be offered them more frequently.
Hello @Vicki
I am so sorry to hear that you had the experience. You have not done anything wrong and I will take this matter forward. Are you able to give me the following information?
Name and NHS no.
Vaccination centre
You can send me this via direct message or support@bloodcancer.org.uk if that works better for you?
The Green Book ( https://bit.ly/3AWlkPV) page 28 regarding Spring Booster eligibility states:
ā individuals aged 12 years and over who are immunosuppressed (defined as immunosuppressed in tables 3 or 4).
Green Book page 16 Table 3 - Anyone with a history of haematological malignancy, including leukaemia, lymphoma, and myeloma.
So as you can see your are eligible even if in remission.
I do hope this reassures you and we are happy to talk this through if it would help? How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
Hello there @nelletap,
I am really sorry to hear about your allergic reactions to the vaccines. May I ask whether you ir your medical team reported the via the Yellow Card Site https://coronavirus-yellowcard.mhra.gov.uk/ as this would help in researching into such reactions?
I have also looked into the advice in the Green Book (https://bit.ly/3INIvOn) regarding alllergies on pages 38 and 39. This may be worth discussing with your Treatment Team or GP when considering further Boosters as there are allergy clinic available in some hospitals.
I do hope this helps and of course please do give us a call if you need any support: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
Thank you for your reply - Iām always impressed and comforted that replies occur on here at the most unexpected times. I didnāt report via the yellow card (I read the side effects for Moderna and rash was mentioned). I did consult with my GP and tell him and he didnāt suggest I report it. He did suggest I avoided Moderna for my 5th and that I had the shingles jab which I am now eligible for. As I say I also had a rash after the Pfizer and I may have taken photos of one or both. The Pfizer (5th) was 29th June 2022. Do you suggest I fill in a yellow form for both? The Moderna was Feb 11th.
Hi @nelletap, Iām sorry to hear of your experiences with side effects and I do hope youāre doing okay. Itās lovely to hear youāre finding comfort in this community.
I would suggest itād be useful to report both of these reactions, as the information can only be helpful in the understanding of them.
In case itās helpful to you at all, as you mentioned the Shingles vaccine, our webpages on staying safe have some information on vaccines including Shingles- Blood Cancer UK - Staying Safe.
Please donāt hesitate to reach out if thereās any more we can do to support you, (0808 2080 888).
Hi @Vicki do you have a Clinical Nurse Specialist? I was allocated one when I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018. She arranged both my 4th and 5th jabs. I would ask your hematology team for assistance.
Hello @Vicki Iām no expert in this and I donāt want to rub salt in your wounds, but at my last appointment with my Health and Psychology Dr I brought the subject up as to how patients can be treated differently depending on where they live. She said that every trust is different to the next?? I live in Gloucestershire, the Drās surgery rang me for a cancer care review, and everything thatās available to me. I was invited for my 5th jab at the end of May.
Just to say that Iāve anticipated something like this happening to me (fortunately it hasnāt) so I always print out the eligibility list from the JCVI (Joint Committee on Vaccination and Immunisation) to demonstrate my eligibility.
Interestingly when I went for my 5th jab (as a long term Chronic lymphocytic leukaemia (CLL) person on watch and wait and no treatments) there was absolutely no check as to my entitlement. The pharmacy just took it at face value. If anything I felt that was too lax from a tax payer perspective as Iād booked it on line and the GP had no involvement in referring me.
Its time for medical professionals to have authorised access to our health records so that they know our conditions, medication and allergies without having to rely on our fragile memories!
Oh @Snellybob you were all armed and prepared and the pharmacy took your eligibility and you were not checked.
Yes, it is a bit worrying isnāt it, never mind eh.
Look after yourself
My husband has been on WW for nearly three years. He had his fifth jab two months ago. The first chemist politely said he had not been informed of a fifth. I rang a larger chemist who invited him attend asap. There was no need to belittle you in public, it was extremely rude and unprofessional.
Regarding 5th Covid vaccination (also called 2nd booster for the immunocompromised etc) I booked my husbands on the Gov website at the start of the Spring booster campaign as āa second boosterā, able to book it but date had to be so many weeks after the 4th dose. It was very straight forward just had to answer some questions regarding eligibility & add NI number. Not sure if they checked NI number against any list of eligible people or not. He had the jab at a Covid vaccination hub. I have always been very pro active regarding the vaccines, I found out that 5th dose booking was available on Gov from this forum.
He has Chronic lymphocytic leukaemia (CLL) & ET but only ever been on watch&wait.
