Hi there! I’m new here so not sure whether this has been asked before but I’m getting a bit panicked.
I’m 35 fit and heathy (except follicular lymphoma, stage 2 on watch and wait) I started feeling a bit rough yesterday so did a LFT which came back positive, I’ve also just had a positive PCR come back. I’ve heard that covid isn’t that bad now but I feel absolutely terrible today, I ache, I have the worst headache that paracetamol won’t touch, I can’t eat. Is this normal? Has anyone else had it?
I’m really worried because of the blood cancer. If anyone can share any experience I’d be really grateful.
Hi @Danielle I am so glad that you have found us just when you needed us.
I am not medically trained but personally I would advise that you either get hold of someone at your medical team or ring 111, if you get worse and it is an emergency 999) as soon as possible and make sure they know your medical history so that you can get anti viral medication or other treatment, if appropriate, asap.
Of course you are really worried and hopefully this will put your mind at rest,
Look after yourself and please keep posting.
The Blood Cancer UK support line will be open in the morning.
Hi @Danielle and welcome to the forum. I’m at the same stage as you and on watch and wait. Fortunately I haven’t had covid as yet.
I can completely understand what a worry this is for you and as @Erica has advised, give your team a call. The Blood cancer UK support line is really useful as well so maybe give them a call in the morning so they can advise you as well.
Was you sent a priority PCR test? I was just wondering if you would receive a call about the antibody treatment?
Please keep us updated on how you are doing. This is a great place to receive support so keep posting.
Sending special wishes your way X
Hi @Danielle I hope you’re doing okay. Have you spoken to a member of your healthcare team as it’s really important they’re aware so they can discuss any next steps with you.
You may find this page useful - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK, particularly the ‘What you Need to Know’ grey box. Here’s a section of what it says (this is advice for people with blood cancer in England but there’s advice for Scotland, Wales and NI on there too) -
If you get covid symptoms and you have a priority PCR test, take the test and send it off straight away. Also tell your doctor what is happening.
If you haven’t got a priority PCR test and you get symptoms, tell your doctor straight away and ask about the quickest way to get a PCR test result. You will probably get a faster result by going to a testing centre, but you can also order a home PCR test by calling 119.
If your PCR test comes back positive, tell your doctor straight away. You will need a telephone assessment to access the new treatments. If you used a priority PCR test, you should be automatically contacted by the NHS within 24 hours of your positive result for this assessment. But if you didn’t get sent a letter about the new treatments, then you might not have been picked up automatically by the system, so you will need to proactively contact your GP or 111 - tell them you need to be referred for a telephone assessment with the CMDU. Your hospital team can also refer you to the CMDU for the assessment. Whoever you speak to, tell them you are immunosuppressed and you think you’re eligible for the new treatments, and show them the links below.
Hi! Thank you all for your responses and your kindness.
I had a terrible night so I was in a bit of a state this morning called 111 and they said to contact my GP, contacted my GP who had never heard of antibody or antiviral treatment and that I would need to contact my oncologist? I explained the letter I’d had with a priority PCR and they said they had no knowledge of this.
I then had a call from a lady from the nhs referral team who said they’d seen my records and that they had identified that I was at risk, they were brilliant and they arranged for me to have the antibody treatment, I’ve just had it and feel fine from the treatment just looking forward to getting home to rest
I’m really not an ill person generally but I’ve never felt this unwell ever.
Hi @Danielle, Thanks for updating us all.
What an ordeal you have been through but i am so pleased to hear you had some great support and got the referral you needed. It sounds like test & protect have triggered a response from CMDU after your test was recognised as positive which is the ideal situation. Do however correct me if i’m wrong.
I hope you get back home soon and can rest up knowing you will hopefully in the next few days only begin to feel better.
Do Take Care, Lauran
I’m so sorry to hear you are feeling so unwell but so pleased that the system worked and that you managed to get the anti viral treatment as early as you did.
I hope you are taking good care of yourself. Have you got people checking in and supporting you?
Please keep us updated on how you are doing. Sending lots of special wishes X
Oh, @Danielle I had been worried about you so thanks so much for letting us know what has been going on for you in the last 24 hrs.
When you are feeling so ill you could do without a battle, but I am glad that it has worked out in the end.
Please look after yourself and keep posting
Hi Danielle
I have Hairy Cell Leukaemia and have just had covid,
I was contacted by the local hospital and had an infusion of Sotrovimab, this is one of the new treatments now being used by the NHS and I have made a full recovery,
Hi @Danielle, I’ve just read your post. It’s sad you’ve had to endure so much physical and emotional stress. We will all have different experiences with Covid and I hope you are feeling much better now
Hi Ian - I was very interested to read your message. I have Hairy Cell Leukaemia, which of course is rare, and I was wondering what symptoms you had when testing positive. Thanks Colin
Hi Colin
My symptoms were just the same as a cold with a few aches, slight headache, and sore throat. I did 2 LFT on Monday and both were negative so I repeated again on Tuesday when the second was positive. I then did my priority PCR test which triggered off the treatment.
Hope your ok
Regards Ian
