COVID and CLL -- A little good news: I was... - CLL Support

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COVID and CLL -- A little good news

DylanPxxx profile image
13 Replies

I was diagnosed with CLL 2 years ago and ever since then the world has been engulfed with the COVID pandemic. The word has always been that CLL patients are particularly vulnerable and the outcome would be really bad for a CLL patient who caught COVID. As a result, I have been really careful, have had three rounds of the vaccine, don't go out mush and when I do I always mask up in public, etc. So, you can imagine my horror when I tested positive for COVID last week. And here is where the good news comes in. I have pretty much had no symptoms. I have been isolating for the last week and have three more days of isolation to go. But the only symptoms I have had have been a slight headache one day, mild exhaustion another day, and a little bit of a sporadic cough. None of these symptoms have been severe at all and, truth be told, had I not tested positive I wouldn't have thought anything of them. In fact, it is entirely possible that the headache and exhaustion were just a result of the stress of worrying about having COVID and not sleeping too well as a result.

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DylanPxxx profile image
DylanPxxx
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13 Replies
Walkingtall62 profile image
Walkingtall62

We like a bit of good news here. Thanks and well done!!!

Shedman profile image
Shedman

Do take it easy. Have you got a pulse oximeter to keep an eye on your blood oxygen levels? Can get one for £12-15Keep in mind that elimination of COVID can be slow.. the isolation rules don’t mean that an individual may not take longer to test negative, to clear the virus.. symptoms/harms can get worse in subsequent weeks. Sorry, just a cautious reality check.

Do your haematology team know you have tested positive?

I hope the course of illness runs smooth for you.

Newdawn profile image
NewdawnAdministrator

I’m delighted to hear this Dylan and I must confess that having now contracted Covid myself and not experienced the catastrophic outcomes some were predicting (hope I’m not tempting fate here), it’s taken the extreme fear out of it for me. When my husband told me I’d tested positive the day before Christmas Eve, I felt the room spin round me. Like you, I think the initial stress response exacerbated any covid symptoms.

I’ve still got a cough and am aware my body is under pressure (sudden inexplicable sweats) but I’ve had colds that have been much worse. Having said that, I was fortunate to get a monoclonal antibody infusion on Boxing Day. It’s the sheer unpredictability of adding Covid to CLL that is scary and I’m not being cavalier about this because I’ve had illnesses take me by surprise in the past. I’m just grateful this didn’t happen last year pre vaccination days because it really was a much more dangerous landscape then. I was on a COVID Ward receiving MABS a few days ago and it felt very different to last year when I was taken to hospital during the peak with something unrelated. The extreme fear factor and hysteria seems to have dissipated and a nurse even told me I could take my mask off because ‘she had hers on’. I didn’t incidentally.

However, this is in no way meant to underestimate the continuing heightened risk of Covid to some and the kicker is not knowing how any individual may react.

Great to hear you’re nearing the end of your isolation period and your post will be reassuring to many.

Newdawn

ninap profile image
ninap in reply toNewdawn

i'm so sorry to hear you have gone through this Newdawn, but what a mercy to get the monoclonal antibody infusion. and smart decision to NOT take off the mas on the ward! how are you feeling now if you don't mind me asking... my best wishes to you - Nina

Mtk1 profile image
Mtk1

Hopefully the omnicrom variant will be our saviour in the end, seems like a much milder illness thankfully.

cllady01 profile image
cllady01Former Volunteer

That IS good news! Thank you for sharing. I hope you are, after all the tests and delays of treatment, are doing well, now on Ibrutinib.

Reddg profile image
Reddg

That's brilliant news,thanks for sharing. It's lovely to have some positive news for a change 🙂

claree_ford profile image
claree_ford

Thank you for sharing that - and look after yourself - maybe it is mild but keep it that way!

Thanks for sharing the good news that you are sailing right through with Covid. Almost identical to our grandson and his symptoms. Best of luck. Sally

DanBro1 profile image
DanBro1

CLL for 2 years? Are you 'Watch and Wait'? Did you receive IV treatment? If so, what type?

DylanPxxx profile image
DylanPxxx in reply toDanBro1

I'm stage 4, on Ibrutinib and it is controlling the CLL well. Thanks

Astro617 profile image
Astro617

Thank you so much for sharing your experience Dylan! Wishing you a speedy recovery.

DylanPxxx profile image
DylanPxxx

To follow up, I did a PCR test today and it came back negative. I'm clear

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