Did you know that lymphoma has more than 60 subtypes and that treatments and outcomes vary wildly?
This year on World Lymphoma Awareness Day, we encouraged patients, caregivers, the healthcare community, and the general public to insist on subtype-specific identification when talking about lymphoma.
More than 1,000,000 people around the world live with lymphoma and 1,000 are diagnosed every day yet many patient organisations report patients are not told their subtype when they are first diagnosed.
This year, Lymphoma Coalition launched the Know Your Subtype campaign to:
Here are some examples of what our members did globally to help spread awareness about lymphomas.
On World Lymphoma Awareness Day, The Swedish Blood Cancer Association has invited politicians and important decision-makers within the Swedish health care system to a closed ”roundtable discussion” in Stockholm. The main purpose of the discussion is to talk about how they together can help create the ”lymphoma care of the future” in Sweden. Their aim with the meeting is to improve lymphoma patients’ access to Swedish health care in general, as well as access to the latest lymphoma treatments.
Buildings and landmarks across the globe were lit red on September 15 in honor of World Lymphoma Awareness Day and as part of the Foundation’s Light it Red for Lymphoma initiative. There were more than 50 buildings lighting including One World Trade Center (New York, NY), Taipei 101 (Taipei, Taiwan), CN Tower (Toronto, Ontario) and much more.
A full list of Lighting partners are available on the Foundation’s official Light it Red for Lymphoma landing page at lymphoma.org/LightItRed.
Find out more here.
Ambassadors of courage:
The stories of lymphoma survivors were prepared and published in the media (online,radio and TV). Stories include comments of medical specialists about innovations in lymphoma treatment and personal experiences from the patients.
Kraujas is also providing a special information kit for patients that includes disease and treatment information, material about psychological support, nutrition, physical activity, etc. The information kit is given for all newly diagnosed lymphoma patients.
LIPA hosted an education session for patients with lymphoma on September 15 in Belgrade to discuss experiences, side effect management, and therapy options.
LIPA also raised awareness in the general public though their "don't let your nodes tie you into a knot" knot tying competition, "Lymphorm yourself" video campaign, and "know your subtype" quiz competition.
On the 15th of September, the Lymfklierkanker Vereniging Vlaanderen vzw (LVV) spread the Lymphoma Coalition Europe (LCE) "Know your subtype" video among doctors, nurses and patients in all the hospitals located in the Belgian Flanders.
In occasion of its annual symposium about Lymphoma, LVV drew the attention of participators to the need to know their subtype by showing the LCE video.
France Lymphome Espoir (FLE) is celebrating its 10th birthday this year. Up until WLAD on September 15th, the organisation asked patients, family members, and anybody else to share the most beautiful things they've done during the past 10 years, posting pictures of their hands with a short message directly on FLE Facebook wall and on other social networks with the hashtag #FLE10ans.
In addition to that, FLE organised a nationwide media campaign (televisions, social networks, web, radios and movie theatres) focused on “It’s amazing what you can live in a decade”. Three videos with three public figures talking about lymphoma in a both serious and humorous way were also launched in occasion of WLAD. Last but not least, local events took place in hospitals to be close to patients, and several hikes were organised around France.
The Lymphoma Association organised a call on NHS England to carry out a lymphoma audit, they launched a Thunderclap https://www.thunderclap.it/projects/46221-typesmatter and a government petition as part of this.
They also launched a ‘What’s your type?’ survey on September 12th too, aimed at people with lymphoma, to help them understand their experiences and knowledge of their subtype.
The Lymphoma Association also hosted an event in London for patients and clinicians on 15 September at the Royal Society of Medicine https://www.rsm.ac.uk/events/events-listing/2015-2016/groups/public-engagement-programme/mmg06-medicine-and-me-living-with-lymphoma.aspx
If we are so demanding for certain things in our lives without apparent importance, such as order a coffee in a bar, how is it possible that many lymphoma patients do not know the exact name of their disease?
With this pretext, AEAL is launched an awareness campaign under the slogan: "Call things by their name". Using the comparison between the various types of coffee, AEAL wants to warn about the diversity of lymphomas currently classified, and to remind patients of the importance of being demanding when asking about their lymphoma.
V-Care hosted a panel with doctors patient representive and social workers with a question and answer session for patients and family members. V-Care also organised an entertainment program at Tata Memorial Hospital.
On 14 September, Linfovita organised a Press Conference on Lymphoma in Italy - The daily obstacles, the needs of patients, the value of time. On this occasion, the organisation will present the preliminary findings of its 2016 survey on the quality of life of patients diagnosed with lymphoma, as well as an awareness project promoted by the Italian Institute of Photography.
On 15 September, several events took place all day long in Milan (Italy). In the morning, volunteers (patients, survivors, caregivers, doctors, researchers) informed people and promoted awareness about lymphoma, offering them free checks of their health status in different booths. In the afternoon, a "Free Hugs Session" with music and entertainment brought hugs all around the city.
These events were organised by Linfovita in collaboration with the Welfare Department of the Lombardy Region and with the patronage of the National Ministry of Health.
MOHA celebrated the World Lymphoma Awareness Day by organising a Patients-Doctors seminar that took place in Debrecen (Hungary), launching a patient education film and releasing green balloons on 15 September.
In occasion of WLAD, Lymphoma Slovakia prepared a press release and a set of activities that support the global campaign #KnowYourSubtype. We explain the importance for patients of knowing their subtype, and we launched new patient services such as regional patient trustees, a permanent advisory office, and new subtype-oriented brochures:
Lymphoma Slovakia developed a social media campaign with news, photos and a facebook contest to raise awareness: https://www.facebook.com/lymfomaslovensko/
The organisation also shared two stories of young patients diagnosed with lymphoma. One of them is a young sportsman who decided to help lymphoma patients by joining the Lymphoma Slovakia team and managing the instagram account dedicated to information, interviews and motivation through sport.
An observational multicentre retrospective analysis of 404 patients with chronic lymphocytic leukaemia was undertaken to determine which patients gain the maximum benefit from first-line FCR (fludarabine, cyclophosphamide, rituximab). Patients (28%) who carried mutated IGHV but neither 11q nor 17p deletion were considered to be low risk. Of these low-risk patients, 71% continued to be free of disease progression following treatment and the risk of relapse decreased after four years after receiving FCR.
Read more here.
A phase II study was undertaken to evaluate the effectiveness of idelalisb plus rituximab in older patients with chronic lymphocytic leukaemia or small lymphocytic leukaemia who were treatment naïve was undertaken. Patients (n = 64) were enrolled in the study. The median age of patients was 71 years. The overall response rate (ORR) was 97% of which 19% were complete responses. In patients with del(17p)/TP53 mutations, the ORR was 100%; it was 97% in those with unmutated IGHV. At 36 months, progression-free survival was 97%.
Read more here.
The International Lymphoma Epidemiology Consortium (InterLymph) is an open scientific forum for epidemiologic research in non-Hodgkin lymphoma (NHL). Established in 2001, the Consortium is an international collaboration of scientists who undertake research projects that pool data across studies to better understand lymphoma risk factors. Although the main emphasis of the collaboration is epidemiology, InterLymph has expanded to include geneticists, pathologists, immunologists, clinicians and other scientists and now includes more than 100 members. InterLymph consists of four working groups (Immunology and Infection, lifestyle and environment, pathology and survival, genetics), and has evolved to include multiple large scale projects that operate across working groups. In 2014, several large pooling projects have been successfully finalized (see below).
The overarching goal of InterLymph is to identify patterns of commonality and heterogeneity in the etiology of NHL subtypes which may assist in illustrating mechanisms of lymphomagenesis. This knowledge has implications for understanding biology, etiology, prevention and control of these malignancies. The Consortium aims to achieve this by addressing research questions that are difficult to answer in individual studies, by sharing data and biological samples. The Consortium has established a central data coordinating center that is a repository of pooled, harmonised data from all recently completed international case-control studies of NHL. In recent years, the collaboration has also expanded to several international cohort studies.
We continue our research investigating inherited genetic variants associated with risk of lymphoma and lymphoma subtypes. In addition to our prior publications for follicular lymphoma (FL), diffuse large B-cell lymphoma (DLBCL), chronic lymphocytic leukemia (CLL), and Hodgkin lymphoma, we published in 2015 our findings for marginal zone lymphoma (MZL). Specifically, we performed a pooled genome-wide association study (GWAS) that included in total 1,295 cases and 7,127 controls of European ancestry (Vijai et al, Nature Commun 2015; 6:5751). Two independent risk SNPs in the human leukocyte antigen (HLA) were identified. Thus in the lymphoma subtypes we have investigated to date, the HLA genetic region has been identified to be associated with risk for all the subtypes. However, the variants identified within the HLA genetic region differ across the subtypes suggesting still different etiologies. Ongoing genetic studies are being conducted in T-cell lymphoma, mantle cell lymphoma, and waldenstrom macroglobulinemia, as well as further studies in HL, CLL, FL, and DLBCL.
We are now moving forward with studies that evaluate the interaction of genetic variants and lifestyle with risk of lymphoma. In 2015, we have published two studies. The first (Kane et al. Cancer Epi Biomarkers Prev 24(7); 1061-70; 2015) investigated the relationship among obesity, genetic variants, and risk of B-cell NHL in 4,979 cases and 7,452 controls. We continued to show that obesity is associated with DLBCL and that this risk increases to almost two-fold for those who are both obese and have genetic variants located in TNF-α gene. However, for FL and CLL, no associations were observed with obesity alone or in combination with genetic variants. The second study (Wang et al. 2015 Am J Epidemiol 181:406-21) evaluates the relationship among autoimmune conditions, genetic variants, and risk of NHL in 8,692 cases and 9,260 controls. We continue to show that individuals with history of autoimmune conditions haven an increase risk of NHL, specifically in DLBCL, MZL, and peripheral T-cell lymphoma.
These increases are for those individuals with genetic variants within the TNF-α gene; the same gene identified with obsesity. Together these two studies provide additional insight into the biological mechanisms involved in lymphomagenesis. Further studies evaluating the interaction among genetic and environmental factors, including sun exposure and occupational exposures, are ongoing.
Arjan Diepstra, MD PhD gives a Pathology Update on lymphoma from the 2015 InterLymph Consortium Annual Conference.
John Spinelli, PhD gives a lifestyle and environment update from the 2015 InterLymph Consortium Annual Conference.
Anke van den Berg, PhD gives an update on Hodgkin Lymphoma from the 2015 InterLymph Consortium Annual Conference.
Vijai Joseph, PhD discusses genetic markers related to Lymphoma from the 2015 InterLymph Consortium Annual Conference.
Karin E. Smedby, MD PhD, gives a survival update from the 2015 InterLymph Consortium annual conference.
Roel Vermeulen, PhD MSc gives an immunology and infection update from the 2015 InterLymph Consortium annual conference.
Many Hodgkin lymphoma (HL) patients find changes in their quality of life the most difficult challenge faced during treatment and recovery. Trying to manage the process can take an enormous toll on patients’ and their care-givers physical, mental, and emotional wellbeing.
To support patients and caregivers, Lymphoma Coalition has developed the Lyfe app - the first and only mobile app dedicated to those with Hodgkin lymphoma. It also serves as a go-to resource for family and friends who might not always understand the challenges faced by HL patients. Reflecting its content and purpose, the name Lyfe is a combination of “lymphoma and life.” The app is free and available on the App Store and Google Play.
Patients and caregivers can share their stories, ask questions and connect with others who are dealing with similar circumstances - locally, nationally and around the world.
NEW: Translate conversations in the chat into four different languages; English, French, German & Spanish.
Find insightful articles providing practical tips designed to help during all stages of the patient experience. This section also includes information geared specifically to friends and family members who are providing help and support during this challenging time.
Some of the more popular topics are:
The Lyfe app contains links to additional information and resources, including Lymphoma Coalition’s member patient organisations so visitors may find a local resource dedicated to them. Lymphoma Coalition hopes the Lyfe app will support HL patients and their caregivers through their experience.
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