What is the advice if you have corona symptoms.

[Belfastbees]

I'm not aware of any specific advice of a w+w CLL patient if I develop symptoms of corona. Only recently diagnosed I intended to follow Dr's advice of putting it to the back of my mind. It's become apparent that wasnt the best advice as any CLL patient needs to be careful regarding any infection. I'm hopeful that the CLL will remain untreated for many years but you can never tell.

If I get symptoms of corona should I seek advice from my GP, my specialist team or like any member of the public, or isolate at the start and seek help if I feel i need it? recent study which is quite gloomy, specifically outcomes of those on w+w no more or less favourable outcome than any other CLL patients. ashpublications.org/blood/a...

[annmcgowan]

Hi I am in treatment on the flair trial in the U.K.

My understanding for CLL is in or out of treatment we follow the rules of the general public.

I would seek a test and if positive isolate and inform my CLL team.

If I was hospitalised I would further advise my team of this as well as informing the hospital if my CLL status and my CLL specialist team contact details.

Those of us on watch and wait are also required to follow the precautions set out for us if shielded and be extra careful when not shielded.

Let’s hope neither of us have to experience this.

Good luck

Ann

[lankisterguy Volunteer]

Hi Belfastbees,

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Many of us that are concerned about when to seek help from an ER (USA) or A&E (UK) are using this type of device to monitor our lung function. When our blood oxygen level drops well below 95% it's time to get emergency help:

en.wikipedia.org/wiki/Pulse...

clinicalguard.com/health-mo...

amazon.co.uk/Finger-Oximete...

amazon.com/CHOICEMMED-Blue-...

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Len

[Belfastbees in reply to lankisterguy]

Yeah, have a blood O2 meter, part of the home first aid box. It's certain we all have a testing time ahead and it seems it may be hard to avoid the virus.

[Coolerjoe]

Hello Belfastbees,

I was hospitalized for COVID in March while i was on treatment for CLL. 16 days in the hospital.. Developed a cytokine storm after beating COVID almost did not make it. They used a drug called acting a to shut down my immune response. Saved my life that night. Stopped treatment for 6 weeks till I was off oxygen full time. Restarted treatment at full dose and just finished..

Just follow the rules for COVID. Socially distance, wash your hands wear a mask.

[Coolerjoe]

Actemra was the drug. Damn spell check.

[Belfastbees]

Oh wow, a close call. I imagine we all have differing immunity issues with CLL depending on our own chemistry. Great to come out the other side and hopefully you have some immunity and confidence going forward.