Latest COVID-19 guide for immunocompromised blood cancer patients from the International COVID-19 Blood Cancer Coalition (ICBCC)

[CLLerinOz]

The latest Patient Impact Statement has been released by the International COVID-19 Blood Cancer Coalition (ICBCC).

Titled "Navigating a post-pandemic world: A guide for immunocompromised blood cancer patients", it aims "to help you navigate and manage the risks arising from the combination of a compromised immune system and possible COVID-19 infection". The recommendations may also "be applicable to other types of infection".

It explains that, "While COVID-19 has become a less significant issue for most people, some groups like certain blood cancer patients remain at elevated risk with profound effects on their lives. If you belong to this cohort of patients, you may live with a weakened immune system due to your illness or the treatment you receive and can suffer from frequent or severe infections that do not go away easily. Even a simple cold or flu could last longer and hit you harder than others. You may also be more susceptible to infections that others can fight off without much difficulty. If you find that you have frequent colds or flu and catch infections more easily than before your blood cancer diagnosis, it is likely that your immune system is not working well due to your blood cancer or your treatment. For this reason, a possible COVID-19 infection could remain a risk for you. What is more, your immune status may continue to have a negative impact on your psychological health and wellbeing due to the need to continue to balance risk when carrying out activities of daily life."

The guide offers "practical tips and recommendations to help you to live a better quality of life and empower you when making decisions".

It covers the following topics:

I. MANAGING RISK

1. RECOMMENDED SAFETY MEASURES

Vaccination

Booster vaccine shots

Access to post-exposure prophylaxis and antivirals

Continued masking and personal protection

See the statement for detailed advice about each of the above.

2. A LAYERED APPR0ACH TO MANAGING RISK

Activities with higher risk

Advice about ways to reduce your risk and

Encouragement to continue practising safe behaviours, even when those around you don't:

"Asking others to wear masks can be difficult but there are some situations where others can or will do so upon request. For example in healthcare settings or at hairdressing appointments."

"Unfortunately, it can be difficult to continue wearing a mask when others aren't. You may be harassed or feel you are being socially excluded, which can have a negative impact on your psychological well-being. However, don 't let this distract you! It's in your best interest. Your health is your responsibility, and you know what is best to keep you safe. Remember you are not alone."

See the statement for detailed advice about ways to manage risk.

II. IMPROVING OUTCOMES

Act proactively

"Even before a potential COVID-19 infection, a few simple measures in coordination with your doctor can help reduce the impact should you become infected."

See the statement for recommendations about treatment plans.

III. STAY VIGILANT AND RECOGNISE THE SYMPTOMS

See the statement for detailed advice.

IV. WHAT TO DO IF YOU TEST POSITIVE FOR COVID-19

See the statement for detailed advice.

"Do not, under any circumstances, use unlicensed and unproven medicine to treat your COVID-19 infection. This can seriously damage your health! Don’t trust rumours, anecdotal evidence, or information obtained from questionable websites – you are responsible for your health and know best how to stay safe."

V. PSYCHOLOGICAL SUPPORT AND MENTAL WELLBEING

"Your mental health and wellbeing are just as important as your physical, bodily health."

"Psychological support services can play an important role in reducing this burden – particularly for the immunocompromised who need to continue shielding and physical distancing despite the relaxation and removal of public safety measures."

See the statement for advice.

VI. STAY INFORMED: RELIABLE SOURCES OF INFORMATION

A list of reliable sources is provided

See more at: icbcc.info/news/

Download a copy of the 2024 booklet:

icbcc.info/wp-content/uploa...

For information about last year's 2023 ICBCC Patient Impact Statement, visit:

healthunlocked.com/cllsuppo...

CLLerinOz

NOTE: This is an unlocked post

[veteranoak]

Thank you CLLerinOz, a really useful document to have.

This mainly confirms that what I'm doing to still be able to do things is OK, which is reassuring, but good info too on timing of testing that's useful to have and to rely on.

Having a yearly report helps one keep a reasonable perspective.

[Unglorious]

Thank you for this post. It reminds of us of how careful we have to continue to be if we are immunocomprised. Still living the life of being a border line hermit. I realize if I don't I will have to pay the price.

[Shooey]

Maria Van Kerkhove of the WHO says we’re still in the pandemic, I do wish they’d stop using post pandemic!!

[JigFettler Volunteer in reply to Shooey]

Pandemic... thought it was officially over!

[Shooey in reply to JigFettler]

I wish Jig !

Three hospitals within my area have declared critical incidents but aren’t allowed to mention the C word although one has adopted mandatory masking in A&E.

Not alerting people doesn’t make it go away unfortunately.

Shooey

[JigFettler Volunteer in reply to Shooey]

coronavirus.data.gov.uk/

Really! I see you are UK based. Me too!

I use the above link which can drill down to your local hospital, admissions and inpatient counts.

I had a 7 week monster respiratory infection from July last year. Convinced it was Covid. I did 4 lat flows, all neg, I got my infection antibodies tested. Negative!!

Other respiratory infections exist.

Stay safe. Stay in touch.

Jig

[Shooey in reply to JigFettler]

twitter.com/ShaunLintern

Thanks for the link Jig.

CUH and JPH have been reported by Shaun this week. Yes, I appreciate that there are loads of respiratory viruses circulating at the moment but if we’re not testing routinely how can we differentiate?

So sorry to hear of your seven weeker and in July, don’t expect that in the summer do you.

Ah well, I shall keep on doing what I’m doing, masking etc and I hope I’m not tempting fate but I haven’t had it yet!!

Best wishes

Shooey

[Skyshark in reply to JigFettler]

It not been updated since last year.

New dashboard is here.

ukhsa-dashboard.data.gov.uk/

Hospital data isn't quite as accessible .xlsx spreadsheets.

england.nhs.uk/statistics/s...

[JigFettler Volunteer in reply to Skyshark]

Thanks that's useful! Thnx!

TBH I've ceased following numbers.

Assumed a defensive shield. No kissing, hugging, hand shaking especially is off-limits. Getting better at not touching face when out and about

Jig

[scryer99]

Good document to sum up how to manage with CLL. It's pretty much what I've been doing so nice to get some confirmation. And I have so far avoided COVID while managing to continue with much of life's daily activities with a few compromises.