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Remission for 21 years after Hodgkins but now High Risk?

Hi all, I am new on here after looking for some answers regarding the NHS letter offering anti viral for high risk people, also the PCR test kit. I am wondering if anyone else who has been in remission for so long has been notified of this?
My background: I have been in remission for 21 years following a very strange year 2000 when I was 34 years old; I was diagnosed with a High Grade Hodgkins Lymphoma, Stage 3A, Nodular Sclerosing. After 7 months ABDV (though allergic to B within weeks), followed by Radiotherapy I was clear. Amazing Treatment by Professor Mint (Bournemouth), then Dr Illeadge (Southampton). I have not been previously been told to Sheild by Government but my employer Local Authority, and Occupational Health Team highlighted me as vulnerable since the beginning so I have worked from home mostly. Much of my work has been Covid work, operationally and strategically re testing and vaccination sites, emergency planning etc

It feels strange to be selected when I have been in remission for two decades. Has this happened to anyone else? Thank you.

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Hi @SarahSwan66 I am really glad you have found us and a very good question.
I was diagnosed 18yrs ago and I haven’t heard anything yet.
I look forward to hearing more about you and the replies from others.

Hello and a great big welcome to the forum.
I hope you can find some answers. It just seems to differ everywhere. I assume you no longer have regular checks so can’t consult your team? Has your GP given any advice?

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Thank you Erica and Nicola for the warm welcomes, I have not been under my consultant for almost a decade now although I do still have yearly mamagrams under the High Risk Breast Cancer department, this I believe is due to the links with the radiotherapy I had across my chest area in the year 2000; which subsequently was found to be a trigger for BREAST cancer. I don’t want to bother my GP as they are so busy in difficult times. So I just wondered who else had been selected and any information on the links between historic blood cancers and risk of severe Covid. My cancer was so long ago and I was very lucky to have received the best treatment and made a full recovery almost a year from diagnosis. Apart from a lump in my breast which was removed in 2015 (a papaoma) I have remained very lucky.

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I must confess that I haven’t done much research into Hodgkin’s Lymphoma just it’s Non Hodgkin’s relatives. but these things can damage the immune response so best to shield.Hodgkins is fairly simple as it’s just one malignancy with a few subtypes but the Non Hodgkin’s comprise about 80 types and then split between B and T Cell and lot’s of types of these too.Then subtypes of each type!

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@SarahSwan66
Hi Sarah,
I had my 13.5yr check up for my Stem cell transplant yesterday & my consultant explained that they had no input to the Government lists of who was classed as vulnerable. They believe the data has come from the GP system & anyone who has been/is immune suppressed or had a transplant gets flagged.
She said that I didn’t need to be classed as vulnerable because i was so far out.
Hope that helps,
Christine

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I think it’s so different in parts of the UK with conflicting information times. How have you been keeping @SarahSwan66?

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I assume this is because the official recommendations for who is considered vulnerable, as written in the government’s “Green Book” (available here) says that one of the criteria for being immunosuppressed includes

Anyone with a history of haematological malignancy, including leukaemia,
lymphoma, and myeloma.

It doesn’t have to be a recent history. Whilst a lot of cancer patients will be immunosupressed during chemo, blood cancers seem to create a lifelong weakness even long after treatment, which is why the Green Book includes this recommendation. I guess there’s a big spectrum though, and some people’s immunity will be fine.

As a Hodgkins survivor myself, I was given a bunch of stuff at the end of my treatment telling me that my immune system would be weakened, and have to carry a card around saying that I have to have irradiated blood products if I ever need a transfusion due to the ongoing risks. All the information is a bit vague though, and I’d love to see some detailed advice on what the long-term immune system picture is for Hodgkin’s patients both for covid and more generally.

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Hello @SarahSwan66 and thank you for joining the forum. I have mentioned your post to my colleagues as there does seem to be some inequalities on who is receiving the letter and PCT testing kit. We can presume that your GP records/NHS spine records show your diagnosis and it has automatically included you in the high risk category but that does not account for why you weren’t included in the initial ‘shielding list’. I would say that if you do have any symptoms do get a PCR test and isolate as per guidance and if you are called regarding the treatment an assessment will be made regarding eligibility. If I do find out anymore I will be sure to message you back. Kind regards Gemma

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Thank you Kevan, always best to air on the side of caution

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Thank you Gemma, much appreciated. Currently my 21 year old daughter has Covid following an outbreak at her work. We have been very careful and she is on day 5 with the rest of us still negative.

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Thank you, this was really helpful.

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Well that’s interesting. Thank you.

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Scary times @SarahSwan66, your daughters diagnosis is definitely too close to home.
Please let us know how you get on.

Hi, we have been incredibly careful and she is now on day 6 and she has tested negative today. She has remained in her room and only come out 3 times since Sunday to go outside, masked up. So far the other four of us have remained negative. She returns to work on Monday if she tests negative again tomorrow. So fingers crossed we have got through this by being stringent. She wasn’t too bad overall, mild flu type symptoms. Thankfully she is fully vaccinated. :+1:t3:

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Hi @SarahSwan66 I just wondered how you have all been doing this week

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