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Covid advice from 19th July

JennyDJennyD
in General advice

Hi everyone
I am 9 months post transplant for AML and doing OK generally. I came off my immunosuppressants a few weeks ago after pretty bad GVHD but I am still taking Gilteritinib as immunotherapy and I am likely to be on that for the next 6 months at least. I have had both Pfizer vaccines but only have 5 antibodies which is very low. I am pretty worried about the opening up on Monday and the current surge in cases. I do not have a problem following the advice of seeing people outside and avoiding people who have not been vaccinated - our son who is 16 has been vaccinated (because of me) but we also have a daughter who is 14 who cannot be vaccinated currently and is desperate to be. I do not want to make my health her responsibility and I do not want to restrict her life anymore than I have done already. Does anyone know whether there is likely to be a change in these rules? She has even suggested deliberately getting infected so she can be safe for me.
I would be grateful for anyone’s comments.

chelle_16
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Answers

  • chelle_16chelle_16

    Hello Jenny

    My name is Michelle and I am one of the online community champions along side some other wonderful individuals and a SCT recipient.

    You are still very early in your recovery but sounds like you have been making huge strides in relation to coming off immunosuppresants. It is in some ways reasuring your receiving immunotherapy as this will have some impact on the Gvhd.

    From that perspective, your immune system will still be vulnerable.

    Great to read your son was able to get the vaccine however I can hear your worries around restricting your daughter further as she is unable to get the vaccine currently.

    I live alone and 2 and half years post SCT and not faced with some of the uncertanties and anxieties you are facing. I can only advise that you do what you feel comfortable doing as a family. Which would include not feeling pressured to conform with the majority.

    Communicating openly, especialy with your daughter about the risks of getting the virus whilst not vaccinated verse holding on and playing it safe.

    If your daughter is struggling there are meassures she can implement, as i am sure you maybe encouraging, that would help ease anxieties and give some form of protection for all of you.

    Such things as;

    • if your daughter wants to go see friends asking them if they have been around others and trying to time it so there is a window between those she is exposed too. For example if your daughter wants to see a school friend who has seen family this weekend, plan to see them a week later when they havent seen so many people. I know this can seem harsh, unfair, challenging, but could reduce exposure.
    • regular lateral flow tests especially a week to 10 days prior to seeing someone and after (as this is when symptoms may show) although bare in mind the asymptomatic people.
    • if your daughter is desperate to go out but fears exposing you, consider a PCR test
    • lots of hand washing
    • lots of antibacterial gel
    • continue use of masks
    • continue to social distance

    Ofwhich all these things are still being reccommended for the CEV

    It is an anxious time for all CEV, if you are able to view the number of cases in your area this may help guide you through decision making on a daily or weekly basis.

    I hope this is somewhat helpful

    If you have specific fears or concerns about coping with the changes you can always seek additional emotional support via the Anthony Nolan Emotional Support Service.

    The online community is always here to support you as well.

    Best,

    Michelle

    Dieseldrinker62
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  • Tom_AnthonyNolanTom_AnthonyNolan

    Hi Jenny,

    I hope all's well - it's Tom from Anthony Nolan here.

    I totally understand the easing of Covid restrictions around the UK is likely to be a concerning time, especially for anyone whose immune system is at all compromised.

    Michelle's given some fantastic practical advice in her post (thanks Michelle).

    We've put the latest government advice for clinically vulnerable people in England on our Covid webpage: www.anthonynolan.org/covid

    There's also advice there for people in Scotland, Wales and N Ireland.

    You also ask whether the restrictions are likely to change again. At Anthony Nolan we keep across all changes to Covid restrictions that may affect stem cell transplant patients and their families. We are not currently aware of any further changes planned beyond 19th July in England, although governments can announce changes at short notice. (Scotland, Wales and N Ireland are easing their own restrictions in different ways at different times.)

    As soon as we hear of any changes to government recommendations, we'll put them straight onto our Covid webpage.

    It's also worth bearing in mind the government advice for clinically vulnerable people in England is just advice, it is not legally required. However at Anthony Nolan we recommend you discuss your own situation with your healthcare team before changing any of the precautions you follow. They have the most complete picture of your medical history and your vulnerability to Covid.

    I hope this helps. I'm sure other patients will respond too - but please feel free to call our helpline on 0303 303 0303 or email us at [email protected] if we can help any further anytime.

    All the best,

    Tom

    chelle_16
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  • Laulau1Laulau1

    Hi Jen

    So sorry to hear your going through this. I'm almost 12 months past my donor transplant and had both astrazeneca vaccines and have no antibodies showing to covid. It is really hard with the proposed changes tomorrow I feel.like I'm back to square one with shielding.

    Does anyone know if there is a campaign to help immunocompromised where you need 100000 signatures to get to government?

    I was thinking I know its on small scale if t-shirts can be designed to make people aware there is a large group of people who are immunocompromised and being forced to shield. From my knowledge of when I've been out people don't really understand the meaning of this, maybe it can be put in simple terms. Just an idea

    Lau Lau x

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