Immunosuppressed

I have been invited as Immunosupprest for a further covid jab. This would be number 7! I had my last chemo 12 months ago and in remission, I have asked my consultant if I should take the jab and he recommends I do, however when I ask about my immunity he does not seem to be able to tell me if it has returned to pre chemo levels. If my immunity has returned it seems unnecessary to have this 7th covid jab?

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@KeithH I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses.
However that is the opinion of your consultant who knows your whole medical history.
I am not a medical person and have had my 6 jabs and have probably not got any/many antibodies and if I have got any I do not know what ‘quality’ they are.
Personally I am going for the 7th booster jab in the hope that any immunity is better than none.
I look at it like the flu jab I trot along every year and have mine in the hope that it might assist me.
I think the question of how many good quality antibodies we have is a difficult one and very personally I wonder if different types of tests give an accurate overall picture.
I stress this is very person, not medical, opinion.
Good luck the answer has to be yours ultimately, take care

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Thank you for your reply and I understand it’s your non medical opinion. I have booked the jab, but the invitation has opened up questions about how long will I keep having boosters? Will my immunity ever return to normal and who will be able to tell me.
I know so many questions :face_with_monocle:
Keith

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Is there any more people out there with follicular lymphoma who can reassure me on how life will go on for a long time. Im trying so hard , but this c word will not go away . :sob:

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That’s such a hard question @Pcox because each case is different. Can I ask what your consultant has said to you?
What I do know is that treatments - when or if you need them - are advancing all of the time!
I really try to think of it as a chronic illness (as advised by my consultant) which makes me think less of the ‘C’ word as it’s still a word I find difficult to use.
I can see others have replies on the other thread offering some great advice and good coping strategies. Have you seen them?
Remind me when your next appointment is? That will be the chance to ask all of your questions so make sure you have everything written down and take somebody with you X

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Hi @Pcox, thank you for sharing how you’re feeling and I’m so sorry you’ve been finding this tough. You’re certainly not alone, and Nichola has given you some good advice. I believe this is the thread she was referencing- Hi there im newly diagnosed for follicular lymphoma - Recent diagnosis - Blood Cancer UK Forum.

Do you have any support around you? Have you been able to share how you’re feeling with your team? Please do remember that our Support Team are here for you if you wish to talk things over (0808 2080 888). We’d be happy to support you however we can.

Take good care of yourself,
Best wishes,
Tanya.

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Hi @KeithH thank you for your post, and I do hope you’re doing okay? As Erica has mentioned when it comes to our own levels of immunity, it may well be worth speaking with your team about this as it’s so very individual. In case it’s helpful at all, we do have some information on our website about covid vaccine efficacy.

We do encourage people to have the covid vaccines that they are eligible for, as having multiple covid vaccine doses gives you the best chance of protecting yourself from covid, although it is of course a personal choice.

It’s very understandable to have questions around this and it’s not easy dealing with uncertainty. Should you ever wish to talk anything over, or need any support, please don’t hesitate to reach out to our Support Team on 0808 2080 888.

Best wishes,
Tanya.

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It’ll be jab no 7 for me too. I was a participant in the PROSECO vaccine efficacy trial for lymphomas (led by Univ of Southampton, part funded by Blood Cancer U.K.) so I know that the type of lymphoma, type of lymphoma treatment and timing of lymphoma treatment all impact how well each of us respond to the vaccine jabs. I didn’t get any response to the first 4 jabs but started to get a response from jab no 5.

Also my understanding from other trials (think UCL did one of them) is it’s not just about the number of antibodies produced in response to the vaccine but also the quality of the antibodies and the quality can also be impacted for some of us with blood cancer.
So my view is I will take any vaccine whenever offered it if my consultant advises me to. So I am all booked in for Jab No. 7 in mid April.

On your second point re overall immunity , it’s a question I wish I had more answers to too. Other than knowing my white blood cell count remains low (around 3.8 2 years after treatment for my lymphoma), and my immunoglobulins are low , I am not getting repeat infections so my consultant is happy and just says “the low numbers are a result of your treatment”, “I Wouldn’t suggest you go on crowded trains or crowded restaurants often, make it an occasional thing”. I’d love to have an immunology specialist tell me exactly what it means and how I should really live my life to minimise any infection risk but happy as long as I don’t have infections. But totally agree it’s frustrating not having more info on the immunity side of things.

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Thank you, it seems to be how long is a piece of string :upside_down_face: but I have taken on board all pros & cons and will have No.7 mid April.

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