Hey just wondering if anyone’s on here with hcl,
I had it in 2012 then relapsed in 2015. It’s a type on blood cancer that can keep reoccurring. I have regular checks at the hospital to check for signs of it coming back.
I’m unsure if I need to shield for the next 12 weeks.
The government advice says * people with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment.
What does any stage of treatment mean, would that include me? Hcl will reoccur that’s why I have regular checks.
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Hi @HCL, a great big welcome to our supportive forum, no, I do not have HCL, but perhaps others can share, but a member of your medical team might be able to help. What I have found, and even more so at this time, we all seem to share similar fears, thoughts, feelings and practicalities. Personally, I think we all might have compromised immune systems and the main thing is that we keep ourselves safe. There is also our wonderful support line, the details are above. How are you?
Hi @HCL welcome to the forum. Hope you’re doing OK. It’s totally understandable that you’ve got questions around this, it’s a confusing time for a lot of people. Did you receive a text or letter regarding whether or not you’re high risk? Regardless of whether you received this text/letter, if you have questions or need clarity around how to keep yourself safe at this time, I’d really encourage you to get in touch with your health care team in order to discuss what steps you should be taking and what guidelines to follow. Are you able to do this?
Take care of yourself and please remember our support line is here if you want to talk this through further.
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Hello hcl! I also have it, and am also in remission. However, I’m conscious my lymphocyte dropped below normal for two yrs after remission, finally hitting the cusp of normal in nov 2019, but hitting 1.0 means it doesn’t take much to be BAck below normal. All other counts are good. I’ve not received a letter or text, but nhs website says not to contact gp or hosp unless you’ve not heard snd think you should’ve done. So what do we do? And how long do we wait for letter to be sure we’ve not been swept up already? What does ‘any stage of treatment mean? Does it include remission? Remission isn’t cured. The guidance isn’t very clear. Hope everyone keeping well x
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Hi @HCL and @MissP143 
I’m currently trying to find out if there’s a deadline that this letter or text is to have gone out by and I’ll let you know.
As you’ll know, depending on the type of cancer and treatment, it can take from a few months up to a year for the immune system to recover. However, we have also spoken to people who say they pick up infections more easily more than a year after treatment. If you find you generally pick up colds and infections easily, then you may want to be more cautious and follow the advice for people within the high risk group to shield yourself for 12 weeks. If you have been in remission for over a year and are generally fit and well, you may choose to just follow the advice for the general public, but please do contact your treating team if you are unsure or need any clarity as they will absolutely have the best advice for your individual circumstances.
Take care of yourselves!
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According to NHS England, they’re sending letters/texts to those who are highest risk, by 29th March (this Sunday). However, if you don’t receive this but are confused as to why, or feel you should have received this, we really encourage you to get in touch with your treatment team.
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I believe the deadline is 29 March
Leukaemia care website advises al leukaemia people are swept up
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Hi @HCL just checking in to see how you are doing? I hope the information from my colleague, Alice, helped you?
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I received my 4 page NHS letter today and I had a very odd feeling in my stomach, I felt tearful and it really brought it home to me that I might not be invincible. Staying safe is really important, we are all very special people.
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Hey thanks for the information everyone, still haven’t had a letter yet i live in Wales, so not sure if they are sending them or if I fall into the high risk group. Left a message with my drs to see if I can get anymore info.
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Stay strong Erica. I’ve not had letter. Not convinced I will, as I’m in remission and doing well. I think. But of course we never know what’s going on inside!
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@HCL hello there, we did get confirmation that letters will be sent to people living in Wales and Scotland too, though as England was the first country to start sending out this letters, it’s possible if you do get one, it might take slightly longer to get to you. Hope you are doing okay otherwise?
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@Erica how are you doing? it’s sound like it was understandably tough for you receiving this letter, hope you are doing okay?
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@MissP143 hi there, I hope you are doing okay? there can be variation for people living in remission. And healthcare teams will instruct letters to be sent out taking multiple factors into account, such as; if someone has any other underlying health issues, using guidelines from the NHS. So they are very much judging it on an individual case by case basis, if this make sense?
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Thank you! Who makes the decision though? Hospital or Gp? My Gp doesn’t even know 3yrs on what hairy cell leukaemia is! The hairy cell leukaemia foundation in the USA advises that with HCL after treatment with cladribine or pentostatin on average it takes 4yrs for the cd4 count to normalise
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@MissP143 no problem at all! This is decided by your consultant and healthcare team at the hospital overseeing your care, they take into account you an individual as well as they use a criteria set by the NHS, and from there they make a decision. I hope this helps?
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Hi ya my husband has hairy cell. We’ve spoken to two gps and the hematology department at the Western General and they have no knowledge of letters being sent out in Scotland. My husbands employer says he needs the letter to go of work and sheild himself. He works as a funeral operative so will definitely come into contact with covid. Is Scotland getting the letter?
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Hi @SuBloodcancerUK I am doing fine and getting into a good routine now. I am very lucky as I love the flat we live in and I am rather enjoying spending more time here, having my lovely music playing, the days are flying by, mind you I cannot remember which day it is !!
@Jac I hope you are doing okay? I’m so sorry to hear this, this must be a really worrying time for you both. We have been informed at Bloodwise that the NHS in Scotland will be sending out letters, to people deemed at high risk though we don’t have an exact time frame as to when this started rolling out, as we do with NHS England. Have you been able to speak to his consultant at all about his risk? If it helps, he is welcome to share our information with his workplace and we’re happy for you to share our contact details with his workplace, if they’d like to talk to us about our guidelines
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@Erica haha I know what you mean about the days! I have to keep checking my calendar to remind myself! hope you’re enjoying the music?
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