These are CLL Ireland’s latest news posts from Twitter and Facebook
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These are CLL Ireland’s latest news posts from Twitter and Facebook
Recent webinar from CLL Society Inc.
Recorded May 22, 2023
Each person who is diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL) has a unique set of genetic biomarkers that make their type of the cancer unique to them. Biomarker testing will give you and your healthcare provider a better understanding of what treatments will work best for your disease type (predictive factors) and help to determine how aggressive your risk of the disease might be over time (prognostic factors).
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CLL Society Education On-Demand: Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL
cllsociety.org
CLL Society brings ASH 2022 to you! The American Society of Hematology Annual Meeting had important research presented and now Drs. Sameer Parikh and Brian Koffman will highlight findings that you sho...Comment on Facebook
Amazing Shirley from Leicestershire is a CLL patient and does a skydive for her 90th birthday.
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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.Comment on Facebook
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/ ... See MoreSee Less
Comment on Facebook
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/ ... See MoreSee Less
Comment on Facebook
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*
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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 LeukemiaComment on Facebook
EU webinar at 12 30 pm today.
This will be of interest to the immunocompromised communities who are still impacted by Covid.
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Welcome! You are invited to join a webinar: The impact of COVID-19 on immunocompromised patients and the lessons learned. After registering, you will receive a confirmation email about joining the webinar.
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...Comment on Facebook
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.
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HSE to begin spring Covid-19 booster programme
www.rte.ie
Comment on Facebook
Some good news from the UK with the approval of #venetoclax plus #ibrutinib as a new first line option.
This treatment has the potential to give patients a deep durable remission.
cllsociety.org/2023/02/ash-2022-dr-tahla-munir-on-predicting-responses-to-combination-ibrutinib-p...
Great advocacy from CLL Support, Leukaemia Care and lymphoma Action to add the patient voice to the submission.
The CLL Ireland team is working on our local submission at the moment and hopefully we get a similar result in the coming months. ... See MoreSee Less
Leukaemia Care successfully campaigns for new leukaemia treatment on behalf of CLL patients
www.leukaemiacare.org.uk
Page last updated on: 21st April 2023 Leukaemia Care is delighted to share the decision by the National Institute for Health and Care Excellence (NICE) to approve the combination treatment ibrutinib w...Comment on Facebook
Laboratory studies show the antibody, called AZD3152, neutralizes all known variants of COVID-19 and AstraZeneca has support from regulators to make the treatment available by the end of this year, Iskra Reic said in a recent interview.
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AstraZeneca confident new COVID antibody protects against known variants
www.reuters.com
AstraZeneca is confident that its new version of COVID-19 antibody treatment could protect immunocompromised patients against all known virus variants, its vaccines head said.Comment on Facebook
The continuing Covid impact on the immunocompromised is highlighted in this article.
CLL patient, leading advocate and Chair of CLL Advocates Network Nick York represents our CLL and other immunocompromised communities. "The immunocompromised are treated like an “invisible underclass” and essentially forced to remain in isolation. “There's complacency in larger policy decisions that ultimately affect immunocompromised individuals and a lack of funding for critical protective measures that help achieve vaccine equivalents. We feel like we are being left behind.” ... See MoreSee Less
Protecting the immunocompromised
impact.economist.com
To effectively fight COVID-19 we must remain committed to protecting the immunocompromisedComment on Facebook
Happy Easter from all of us at CLL Ireland ... See MoreSee Less
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Photos from Leukaemia Care's post ... See MoreSee Less
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