Antibodies and vaccines

[kitchengardener2]

I was interested in the post from Aussie Neil regarding Antibodies and Vaccines.

Since Covid started I have had two Covid jabs prior to starting Acalabrutinib and then another three. I was advised by my Consultant Heamatologist to have whatever jabs I was offered. So in addition to the above, I have had two annual flu jabs with another booked for the end of September, two Shingrix and two pneumonia.

I do understand that my body will remember infections and vaccines prior to CLL/Acalabrutinib do wonder if there is anything to be gained from a private antibody test. I haven't done this at all but my Covid antibody level has been negative with every test done via the National Office of Statistics Covid19 Survey. My husband who doesn't have CLL is always positive!

We are still being as careful as we can, wearing masks and avoiding crowds and visitors. I was hoping that Evosheld might be approved but this is looking unlikely, certainly this year.

[Walkingtall62]

Could you ask your consultant to fit this is to regular blood tests. Results take a day or so longer to come through. Interestingly my results via the consultant were in line with ONS. Only done just recently via the consultant. All the best

[mrsjsmith in reply to Walkingtall62]

Sadly that is down to the consultant. I have asked twice and I have been told it’s not hospital policy. I have also raised a question as to why so little information is given about vaccines in general. I actually had to ask a consultant a few years ago to write to my GP saying which vaccines are suggested. I have been told the question will be asked of the team.

Colette

[Walkingtall62 in reply to mrsjsmith]

We cant be far apart! I was also told it wasn't hospital policy (now you have reminded me!) and lo and behold there it was at my next visit!! Meanwhile I had told my nurse (who is much more proactive) of my results from the Birmingham research! I was also told many years ago that the consultant had no idea what vaccinations I needed - I asked him straight after he told me to bring all vaccinations up to date! - and the GP and their staff didnt know which Pneumonia vaccine to give first - and at the time I wasn't 'with' this CLL group and couldn't find the answer on google!! Imagine having to look there!! I only had the vaccinations for Shingrix because of this group. I checked with my nurse first of all if it was ok to go ahead. I listened to a blog recently, on this site, from Dr Lamanna in the States! Seems a lovely lady!! I think this group is 'the best team' we have!!

[mrsjsmith in reply to Walkingtall62]

South London.

I had my pneumonia vaccines back to front because the practice nurse refused to give me the correct one even though I quoted the Green Book to her. What concerns me is I know we don’t always get a good response to vaccines. A friend recently changed hospitals and was astonished that all her antibodies to vaccines were checked in the new hospital. This is something I am pushing for now. Next week I am speaking to my GP to ask if she can arrange, or is this something for an immunologist. As pneumonia is the highest infection killer I would like to know how good mine are, or not !

I am also in a cancer group in my hospital and I do think this is something that should be discussed with all patients before treatment. Until I joined the CLL Support I didn’t know we shouldn’t have live vaccines. No clinician has ever told me that. This is an issue I am getting on my soapbox about.

Colette

[kitchengardener2 in reply to mrsjsmith]

I only knew about live/dead vaccines because my friend was a senior oncology nurse. It's like having a private nurse because she checks everything for me. When I was first diagnosed I was given a nurse specialist, she was connected to Macmillan and in the beginning was wonderful. She answered my questions and sourced information for me but I don't know what's happened but she isn't as keen to reply now and sometimes doesn't. I feel a but letdown. Thank goodness we have this group.

[JerrysGirl3 in reply to kitchengardener2]

I'm sorry to hear that about your nurse specialist. Maybe getting too personal ? I had a similar experience with a nurse specialist. We had a great first phone conversation! I was like, she really and truly understands me!! Two weeks later she was totally professional. Weird. I really feel like I have nothing to say now.

[Walkingtall62 in reply to mrsjsmith]

West London. Was told by my consultant (I think) about live vaccines. Just tried to access my vaccinations with my GP but it isn’t a great site. I am liking the fact that your friend has recently had all her antibodies checked re vaccinations. I think it is brilliant that we can do this. My specialist nurse is excellent! Thanks for the info

[mrsjsmith in reply to Walkingtall62]

I knew it was possible I just didn’t know it was routinely done. Someone here mentioned tetanus, and how often do we walk on rusty nails, but certainly knowing the efficiency of the pneumonia vaccines would be useful.I am lucky and there is one particular doctor in the surgery that I always try to see or speak to. She is excellent and always reads latest letters and tests before speaking to me.

Colette

[kitchengardener2 in reply to mrsjsmith]

My goodness you are lucky! Did I tell you that I have finally managed to get a cardiologist referral? My consultant did that and also arranged for an Echocardigram followed by a 24 hours ECG tape. The scald has more or less healed now but I am still taking the Apixaban and still not happy about the dizziness.

I really don't like this aging business 🤣🤣

Take care, Alice x

[mrsjsmith in reply to kitchengardener2]

Yes I am very lucky.

Good news to add to your list of ‘ologists ‘ I have a very low pulse but not sure I want to further add to the list just now.

I have been going to a balance clinic ( brilliant online physiotherapist ) and I saw the Professor in charge of the department this week and she mentioned that the Lacidipine I am on for high BP ( Ibrutinib ) can cause dizziness if I get up quickly, but the benefits outweigh the negatives and I will just be more careful.

Hope the cardiologist will help.

Colette

[Shiresboy in reply to mrsjsmith]

I was given all recomended vaccines in the green book, my consultant also wrote to my gp re vaccines. My specialist nurse run anti body tests for response to covid vaccines, came back positive, but she still recommends precautions where necessary, I live in Oxfordshire

[mrsjsmith in reply to Shiresboy]

You are very lucky with your hospital. I have asked twice for Covid antibody testing and quoting various eminent professors who are offering to patients, but all I got was a smirk and told it’s not hospital policy.

Colette

[kitchengardener2 in reply to mrsjsmith]

That's about par for the course!! I am going to try my CNS but don't even hold hope out of getting a reply. Alice xxx

[JerrysGirl3 in reply to Shiresboy]

My docs have never even mentioned any of this to me!!

[kitchengardener2 in reply to Walkingtall62]

I asked for blood printout and reluctantly she did send it but clearly said that she doesn't have time to do it . She said ask the GP (there's a joke, can never get to speak to one). I just don't understand why things which are important to me are seemingly not so to medical staff.

[JerrysGirl3 in reply to kitchengardener2]

I feel you 🙁

[Walkingtall62]

Are you able to sign into a website called Patients Know Best. I used to always receive a hard copy of my blood results in the mail but now I find them on this site. No idea who invited me to join, but it is very handy. Saves paper and postage too. Don’t even know which hospitals use this

[Feestvarken in reply to Walkingtall62]

I have access to Patients know best, when t started to attend at Chelsea and Westminster hospital. Very useful.

[BallyB]

I have had a total of 5 Moderna COVID jabs and have developed no antibodies. I am taking acalabrutinib and this is a common issue. I have had Evusheld and will get another does in a month, as per the six month interval suggested by the FDA.

[kitchengardener2 in reply to BallyB]

You are lucky in the USA, the UK government are dragging their heels and somewhat ignoring the immunosuppressed!!

[Mtk1]

Hi Alice, I was interested to hear you had 2 pneumonia jabs, when I asked my haematologist about this he just said that it would probably not work for me, I had my last pneumonia jab 20 years ago and he seems happy to leave it there. Dave.

[kitchengardener2 in reply to Mtk1]

I asked my CNS to check for me and she came back to say that I would need two because of not being able to have live vaccines. The practice nurse gave me the vaccine used for children with I think a six week gap. My husband had the normal live vaccine. I was told, get it and even if it doesn't give full protection, it won't harm you!!

[FairweatherSailor]

Not sure where you are based but I am in Surrey (UK) and on W&W with the Marsden. They do not routinely do antibody testing but were happy to add it to my bloods when I asked. Came back positive but could not give a value. So I paid privately (Exeter Uni as I recall about £40 ) and it gave me the full count. I found it quite comforting. My consultant has also taken the line that I should have every vaccination on offer as it is always better than getting whatever it is protecting you from ! Good luck. Keith

[bennevisplace]

If you're willing to pay £39 monitormyhealth.org.uk/covi... provides a quantitative result based on the highly regarded and widely used Roche Elecsys S test.

It's still a question as to what to do with the figure you get, even though you will be able to see where you fit into the range of people who took the same test after vaccination, and how you compare with CLL patients in the Birmingham Uni study.

[AnneHill]

It was only reading on this site that I found out I could have a pneumonia vaccine every 5 years. I was told by the gp surgery that I needed a letter from my consultant. Thankfully he was happy to do it. We were going away in 2014 and to places that it was best to have extra vaccinations. The doctors knew I couldnt have live vaccines. It was mainly childhood boosters. I could have had these before if I had been told. Tetanus is a prime example.

I have ivig every 4 weeks. Im going on Tuesday. I havent had any bugs but I dont know how much I am protected. Anne uk

[kitchengardener2 in reply to AnneHill]

Anne, it was after travel vaccinations in 2018 that my CLL was diagnosed. I was given the usual live vaccines for childhood illnesses which caused bad reactions and raised lymph nodes. These didn't go down so further investigation was then done. The thing is why don't GP's check records properly. My friend was incredibly ill after being given tablets she was allergic to.

[AnneHill in reply to kitchengardener2]

I was lucky the nurse knew I couldnt have live vaccines. Years ago my doctor would give me antibiotics because my white cells were slightly raised. I was exhausted and had terrible headaches. Then I had 3 fits in 10 days.

The neurologist had also noticed the slight change in my blood count. He eventually asked me to have the test repeated. It took ages to be told I had cll. I thought I had leukaemia because my Dad died of cll in 1968. The nurse who took the repeat bloodtest was evasive when I asked why I was having it done. She mentioned raised white cells but wouldnt look me in the eye. I knew what that meant.

I needed surgery for a slipped disc and the surgeon had to ask the neurologist about the bloodtest. My GP said he was sorry but he didnt know that I had only found out the day before and nobody had arranged haematology.

I wrote to the neurologist and complained. He asked us to go and see him. I was in agony waiting for back surgery. He said he was dealing with patients with serious problems such as MS and other diseases. How could anything be more disconnected?

All different departments. The orthopaedic specialist had to request an appointment with haematology. My GP was the last to know. This was 2001.

This is confusing I know.

[skipro]

A couple of thoughts

I’ve had no antibodies from Pfizer but did with Moderna. Which type did you get?

There is evidence that drugs for CLL like Rituximab and Obinutuzumab within a year of most recent dose block antibody responses. Have you received any of these meds for CLL?

There is a way that a small physician group like mine could order 3 dosages of Evusheld directly from Astra Zeneca this bypassing the government processes. It’s about $1800.00 US Per dose. Check to see if your doc will order it. You’d have to find 2 other people who would be willing to pay for it so you could all 3 get it.

Which country are you in?

Beat of luck

Snowshoe

[kitchengardener2 in reply to skipro]

I am in UK but that sort of cost would be out of reach to me. Interesting what you say about Pfizer v Moderna. My first 3 were Pfizer and no antibodies, my 4th was Moderna and inconclusive for antibodies which made me think that there may have found some but not enough to call, my 5th was Pfizer again and and negative!!Thanks