Cll Ireland Is a Patient-Led Advocacy Group.
Our goal, is to ensure that anyone affected by Chronic Lymphocytic Leukaemia (CLL) can gain access to the information, advice and support they need when they need it!
Important Information
Latest News
Amazing Shirley from Leicestershire is a CLL patient and does a skydive for her 90th birthday.
Watch: Woman skydives for 90th birthday
www.bbc.com
A woman with leukaemia has jumped out of a plane to mark her 90th birthday for charity. Great work from CLL ADVOCATES Network to help produce this White Paper on the immune challenges of patients with CLL.
The Covid19 pandemic has highlighted many of the issues for patients and the work on this paper will help to focus attention on a real unmet need for them and their families.
Our own Jan Rynne was part of the working group to add the patient voice.Cast your minds back to the early stages of the COVID-19 pandemic – to the fear you may have experienced, the uncertainty and the isolation as you were locked down and were unable to meet with your friends and family. Remember being scared about the potential of catching an infection that could have serious consequences for your health, and how this affected the way you had to cope throughout the pandemic.
These feelings and challenges can be a part of the day-to-day reality for people living with chronic lymphocytic leukemia (CLL) who are often vulnerable to infections and related complications – even in times when there is no threat from a pandemic.
CLLAN in partnership with @ AstraZeneca set out actions needed to achieve improved management of the broad immune challenges that may be experienced by CLL patients. Read the white paper here: www.clladvocates.net/whitepaper-CLL-immune-challenges/
This important White Paper highlights the immune challenges for patients with CLL.
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. This area has long been overlooked in CLL management and care, despite infections being a leading cause of mortality in people with CLL. There is currently no consensus on what ‘good’ immunocompromised management looks like for people with CLL.
The words of Nick York advocating for our community.
"Cast your minds back to the early stages of the COVID-19 pandemic – to the fear you may have experienced, the uncertainty and the isolation as you were locked down and were unable to meet with your friends and family. Remember being scared about the potential of catching an infection that could have serious consequences for your health, and how this affected the way you had to cope throughout the pandemic.
These feelings and challenges can be a part of the day-to-day reality for people living with chronic lymphocytic leukaemia (CLL) who are often vulnerable to infections and related complications – even in times when there is no threat from a pandemic.
Despite a compromised immune system being a key challenge for many people with CLL, patients often feel that it is not well known or understood by clinicians.[1] Information and guidelines on diagnosis and classifications other immune challenges is often not consistent and this creates a significant unmet need for people with CLL.[2] Continuing to improve both survival and quality of life for people with CLL must remain a focus in cancer treatment and care. Identifying meaningful strategies to managing immune risk is the difference between being able to live a full life and having to avoid physical interactions.
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. I am incredibly grateful to all the individuals and organisations who have contributed to this piece of work. It is only by bringing together the insight of patient representatives and the expertise of clinicians that we can make practical and tangible recommendations that will help people with CLL to come out from behind the protective shield and live as full a life as possible.
I hope that this is a powerful and thought-provoking white paper that broadens your understanding of the unspoken experiences of people with CLL and moves you to consider your role in transforming care for people with CLL facing immune challenges."
Nick York
Working group member
Chair, CLL Advocates Network
www.clladvocates.net/whitepaper-CLL-immune-challenges/
The results of the clinical trial CLL13
CONCLUSIONS
Venetoclax–obinutuzumab with or without ibrutinib was superior to chemoimmunotherapy as first-line treatment in fit patients with CLL
This treatment is now available in Ireland
Great work from Prof Patrick Thornton Barbara Eichhorst, M.D., Carsten U. Niemann, M.D., Arnon P. Kater, M.D., Moritz Fürstenau, M.D., et al., for the GCLLSG, the HOVON and Nordic CLL Study Groups, the SAKK, the Israeli CLL Association, and Cancer Trials Ireland*
First-Line Venetoclax Combinations in Chronic Lymphocytic Leukemia | NEJM
www.nejm.org
Original Article from The New England Journal of Medicine — First-Line Venetoclax Combinations in Chronic Lymphocytic Leukemia EU webinar at 12 30 pm today.
This will be of interest to the immunocompromised communities who are still impacted by Covid.
us06web.zoom.us
The COVID-19 pandemic highlighted the unmet needs of 13 million immunocompromised EU citizens, including organ transplant recipients, severe CKD patients, patients with haematological malignancies, am... The Health Service Executive (HSE) is to start a spring Covid-19 booster vaccination programme for specific groups.
The programme is for people aged 70 years and older, residents of long-term care facilities for older adults and people aged five years and older with a weak immune system.
Those eligible can get a booster vaccine from a participating GP or pharmacy or at a Community Vaccination Centre (CVC).
Those eligible must wait at least three months since their previous Covid-19 vaccine, or since they have had a Covid-19 infection, before getting the booster.
Amazing Shirley from Leicestershire is a CLL patient and does a skydive for her 90th birthday.
Watch: Woman skydives for 90th birthday
www.bbc.com
A woman with leukaemia has jumped out of a plane to mark her 90th birthday for charity. Great work from CLL ADVOCATES Network to help produce this White Paper on the immune challenges of patients with CLL.
The Covid19 pandemic has highlighted many of the issues for patients and the work on this paper will help to focus attention on a real unmet need for them and their families.
Our own Jan Rynne was part of the working group to add the patient voice.Cast your minds back to the early stages of the COVID-19 pandemic – to the fear you may have experienced, the uncertainty and the isolation as you were locked down and were unable to meet with your friends and family. Remember being scared about the potential of catching an infection that could have serious consequences for your health, and how this affected the way you had to cope throughout the pandemic.
These feelings and challenges can be a part of the day-to-day reality for people living with chronic lymphocytic leukemia (CLL) who are often vulnerable to infections and related complications – even in times when there is no threat from a pandemic.
CLLAN in partnership with @ AstraZeneca set out actions needed to achieve improved management of the broad immune challenges that may be experienced by CLL patients. Read the white paper here: www.clladvocates.net/whitepaper-CLL-immune-challenges/
Looking for more information about CLL?
We’ve produced a handy booklet explaining all about CLL. We cover such topics as:
- What is CLL?
- Signs & Symptoms of CLL
- Staging
- Treating CLL
- Complications of CLL
- Living with CLL
- Talking about CLL
and much more! Click on the button below to open the file – it’s a great resource and we’re delighted to share it with you!