White Paper recommends steps to improve the care and support of people with Chronic Lymphocytic Leukemia who face immune challenges

[CLLerinOz]

". . . despite advances in therapy, infection remains a major risk in CLL and is a key challenge in CLL management. People with CLL face varied immune challenges – in addition to infections – along the patient pathway, which form a major part of managing day-to-day life with CLL."

The SARS-CoV-2 pandemic has put additional pressure on those with CLL. On the flip side, during the pandemic, more people have become aware of some of the challenges facing those who are immunocompromised.

"Given the spotlight the COVID-19 pandemic shone on immunocompromised people, the CLL Advocates Network (CLLAN) and AstraZeneca wanted to build on this public recognition to positively impact the care and support offered to people with CLL."

So, they produced a White Paper titled "Compromised: Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia" which was released this week (15 May 2023).

clladvocates.net/wp-content...

The White Paper highlights 4 key recommendations:

"Creating global clinical guidance for monitoring and managing immunosuppression in people with CLL

Ensuring that immunocompromised status is flagged in the patient health records of people with CLL

Instigating education and awareness raising activities amongst healthcare professionals, especially primary care physicians

Making shared decision-making and personalised approaches commonplace in the management and care of people with CLL"

It notes that:

"Further work is required to ensure that national haematological bodies recognise and adopt similar standards of immunocompromised care; the International Workshop on CLL (iwCLL) may be well placed to develop more specific guidelines and work with national champions to ensure effective implementation."

As well as highlighting the role health professionals can play, the report acknowledges that:

"Empowering people with CLL to take an active role in the management of their disease could also be beneficial"

It explains that immune-related challenges can impact the social life and mental health of someone living with CLL and discusses measures to prevent specific infections including pneumococcal, flu, Covid-19 and shingles while acknowledging that "consolidated practice guidelines for infection prophylaxis in CLL should be developed."

It also discusses autoimmune complications (AICs), the risks of severe COVID-19 and the risk of secondary cancers in those with CLL.

"Elevated risks for secondary cancer have also been reported in people with CLL, including non-melanoma skin cancer, melanoma, sarcoma, and lung, renal, and prostate cancers."

"Additional cancer rates are relatively low in people with CLL, but awareness of the possibility can help to monitor and reduce the likelihood that a potential additional cancer becomes challenging to treat. People with CLL have an impaired immune system, and this may partly explain the increased incidence of secondary malignancies."

As well as reading the full report, you may also wish to visit or revisit our pinned post about vaccinations for those with CLL: healthunlocked.com/cllsuppo... and our pinned post about immunity that is maintained by   AussieNeil : healthunlocked.com/cllsuppo...

Enormous thanks to the White Paper working group: Nick York (Chair), Pierre Aumont, Rita Christensen, Lea Koren, Jan Rynne and Raymond Vles. The paper was commissioned and funded by AstraZeneca and co-developed and reviewed by CLLAN and AstraZeneca. "CLLAN representatives did not receive any financial compensation in relation to this white paper." "The working group’s thanks also go to Professor Paul Moss, University of Birmingham (UK), and Professor Clemens-Martin Wendtner, München Klinik (Germany), who kindly acted as non-compensated reviewers of this white paper and provided input on content."

clladvocates.net/whitepaper...

Note: this is an open, unlocked post so that it will reach more people.

CLLerinOz

[Pinkdark2018]

Thank you for posting this. I haven’t read it yet but will do in due course.

[annmcgowan]

Hi thank you for this post very good. I have browsed through it and will read in depth later. Does this apply to Australia only?

Ann

[Jm954 Administrator in reply to annmcgowan]

No, it's worldwide, an international organisation.

[annmcgowan in reply to Jm954]

Brill so pleased to hear that. I will give it a more thorough read.

Thanks Jackie

Ann

[Jm954 Administrator]

I also received this report and it's definitely worth a read, lots of good work done by the working group.

Jackie

[Sushibruno]

” additional cancer rates are relatively low in people with cll” this is one of my concerns having this disease. Though reading this made me take a deep breath.

[SofiaDeo in reply to Sushibruno]

IMO it's more about noting the possibly, and aggressively ruling them out when any symptoms pop up. Instead of waiting months or years to mention it/see a doctor about it. Medicine nowadays can catch/cure if not manage, things when caught early enough. Especially when we insist skin things or other things be tested/biopsied, because we do have an increased risk. Like me, I was coughing and my lungs were clear, but a CT showed lesions. I was referred to a pulmonologist urgently to make sure it wasn't a secondary malignancy. It wasn't. I have a good doc, who will rule out malignancy sooner rather than later, which is something I prefer. I don't want to "wait and see if it goes away".

[Sushibruno in reply to SofiaDeo]

I agree Sofia.

[JigFettler Volunteer]

Excellent post. Very valuable information. Thank you. Jig

[UK-Sparky]

I should mention CLL Support is part of the network and helped craft the paper .

[CLLerinOz Administrator in reply to UK-Sparky]

Sorry that I left out that very important detail. Thanks!!

[UK-Sparky in reply to CLLerinOz]

No worries you are doing a cracking job!!

[CLLerinOz Administrator in reply to UK-Sparky]

😀 Much appreciated.

[Concerned99]

Thank you for this post. I made sure in 2019 that my husband got all these vaccinations. We were able to buy all off them. When the doctor administered these he noted that my husband (1949) should have his childhood vaccinations again. We paid for those as well. He was the only one who ever told us this. Not our GP or his Hematologist.