The Truth of it VideosDeveloped in collaboration between the Canadian Partnership Against Cancer and the Health Design Lab, part of the Li Ka Shing Knowledge Institute at St. Michael's Hospital in Toronto, The Truth of It features unscripted interviews of Canadians sharing their personal experiences with cancer.
By providing candid accounts of the personal impact of cancer, the video series serves as an educational resource for health care professionals as well as patients, survivors and others with a personal connection to cancer. The series includes both patient and caregiver stories.
Link to Video
9th Canadian CLL Meeting Report - Winnipeg, MB, October 3-4, 2013The annual high-level science meeting brings together oncologists, hematologists, researchers and trainees across Canada to hear about CLL clinical trials in Canada, and basic research on CLL. The poster session, initiated last year, gave trainees and researchers an opportunity to present their findings and selected posters were presented orally.
The keynote speaker was Dr. Nicholas Chiorazzi from Karches Center for CLL Research, The Feinstein Institute for Medical Research, New York. He spoke about his research with growing primary CLL cells in immune deficient mice (mice that lack an immune system). This research will allow scientist to investigate human CLL cells in an animal system. Indeed, Dr. Chiorazzi has made observations that would have been impossible in the classical research setting just using patients’ blood samples.
Clinical Trials: An overview of clinical trials for CLL in Canada and a review of the CLL11 (GA101/Obinutuzumab) study results were presented by Dr. Carolyn Owen, Alberta Health Services. Dr. Versha Banerji, from Manitoba Institute of Cell Biology updated the group on A Phase II Study of AT7519M, a CDK Inhibitor, in Patients with Relapsed and/or Refractory Chronic Lymphocytic Leukemia. One challenge for this clinical trial is recruitment of patients. Dr. Lilian Amrein and Dr. Sarit Assouline from McGill University talked about research with BKM120, a pan class I PI3Kinase inhibitor and their findings suggest that BKM120 should be tested clinically in CLL. Dr. Christine Chen, Princes Margaret Hospital in Toronto presented her findings on patients using Lenalidomide for CLL greater than 5 years. It was found that toxicities experienced with Lenalidomide could be controlled with a lower dose. Unfortunately, Dr. Mohammed Farooqui was unable to attend the meeting due to the debt crisis in the US and the restriction on travel for NIH staff. Dr. David Spaner filled in with a presentation on Glucocorticoid resistance and JAK inhibitors in CLL. During questions, it was raised that Canadian Centres need to coordinate the clinical trials they take on to maximize patient enrolment and potential benefit to patients.
An exciting experience for those attending the meeting was to meet the gracious and famous Dr. Kanti Rai, who talked about Future treatment in CLL. He predicted the use of bi-specific monoclonal antibodies against CLL specific markers could be the next big advance in CLL therapy. He also talked about the excitement over ibrutinib as a therapy for CLL patients.
Clinical features: Highlights of the international world CLL meetings were presented. Focus was on long-term control, small molecule inhibitors, MRD detection, the role of stem cell transplants and evaluation of co-morbidities. A very interesting talk by PhD candidate Sara Beiggi discussed the clinical characteristics and outcome of patients referred to a CLL site- specific clinic. It seemed that patients that were referred to a CLL specialized clinic had better overall survival. The reasons are not known and are the focus of further research. Dr. Cindy Toze discussed unexpected and unusual infections in CLL – don’t take chances if you think you have an infection. Dr. Mitchell Sabloff is studying a genetic approach to predicting chemotherapy toxicity in CLL and has some preliminary results suggesting there might be genetic factors to predict toxicities to Fludarabine treatment.
Intellectual history: Dr. Marti of the National Institute of Health has not yet written his book about the history of CLL and was encouraged to do so by all those he met at the meeting. This year’s update from him was the history of iwCLL. He showed a photo of Jacques-Louis Binet and Kanti Rai, who were given a special tribute at the recent iwCLL meeting in Cologne, Germany. Drs. Kipps and Hallek were the winners of the Binet/Rai medal for outstanding contribution to CLL. Michael Hallek was also presented with the Galton Lifetime Achievement Award.
Patient Advocate: Deborah Baker gave an update on the CLL Patient Advocacy Group activities of the past year, including information about associate membership in the Canadian Cancer Action Network, the patient submission to the pan Canadian Oncology Drug Review for Bendamustine and other initiative for Rituximab coverage in Ontario. She also encouraged the researchers and clinicians to check out the websites of CLL Patient Advocacy Group (CLLPAG) , CLL CANADA and CLL Patient Power Advocacy Group . She closed by telling those present that CLL research provides us with HOPE as patients.
Basic Science was presented on Friday morning. Researchers studying at the cellular level presented their findings as they look for novel ways to understand the CLL microenvironment and how they might use this information for new drug treatments. It was interesting to see the interaction and sharing of ideas during the presentation question periods. The next meeting will be in September 2014 so that attendees can tour the Museum of Human Rights which is scheduled to open around that time. It will also represent the 10th anniversary of this meeting. Dr. Keating has agreed to be the keynote speaker for the meeting.
Submitted by Deborah Baker
Reviewed by Dr Spencer Gibson
Financial Hardship of Cancer in Canada: A Call for Action!
REAL PEOPLE, REAL HARDSHIP
"Bankruptcy. Welfare. Losing the family home. These are not the outcomes we usually associate with providing compassionate care or surviving the cancer journey. But for some Canadians, the financial impact of cancer can be this devastating. It's time to rethink how cancer affects Canadians, and what we must do to enhance the quality of life for everyone touched by the disease."
Earlier today, the Canadian Cancer Action Network (CCAN) and the Canadian Cancer Society - Manitoba Division launched the report, Financial Hardship of Cancer in Canada: A Call for Action.
It is critical that the patient voice be heard, loud and clear. You can help generate dialogue across Canada by sharing the report with your network; posting on your Facebook page; commenting on Twitter or reaching out to your local media to draw further attention to the issue in your community. Let's work together in order to bring about change and real improvements over the next five-years!
To download the report or view the press release and patient videos, please visit the Canadian Cancer Action Network website
You can also download the full report here:
Someone in my family has cancer: A video for kids and parents
A diagnosis of cancer is devastating, not only for the patient, but also for his or her entire family. Lundbeck Canada has developed an animated video aimed at helping children better understand cancer in the family and help them cope with the situation. This video is meant as a conversation starter and should not replace an open conversation between a child and an adult. Watch it with your children or grandchildren.
Here are some organizations that might be useful in helping you to answer any tough questions that might come up:
Canadian Cancer Society — Telling children about a cancer diagnosis in the family
American Cancer Society — Helping children when a family member has cancer: Dealing with diagnosis
Cancer Research UK: Talking to children
NYU Langone Medical Center: Straight talk to kids
Fondation québécoise du cancer: Du soutien au quotidien pour les Québécois atteints de cancer et leurs proches
Video on YouTube:
Our New PartnerCLL Patient Advocacy Group is pleased to partner with Patient Power to bring you audio and video interviews about CLL to help you make informed decisions in partnership with your medical team. These are patient-centric programs focus on delivering the most credible, authoritative and up-to-date health information. Founded by patient-advocate, medical journalist, author and cancer survivor Andrew Schorr, Patient Power goes far beyond basic health information. View the entire library of audio and video interviews on cancer and chronic illness at Patient Power.
CLL LIVE 2012 VIDEOS ARE HERE!
LINK HERE FOR VIDEOS
LINK HERE FOR VIDEOS
WEBSITE LINK: http://cllpag.ca/Conference2012/index.html
Feb 1, 2012
Pan-Canadian Oncology Drug Review (pCODR) UpdatePan-Canadian Oncology Drug Review (pCODR) Update We have been accepted as a Patient Advocacy Group by pCODR. CLL PAG is pleased to report that we have made a submission to pCODR in support of Lundbeck Canada’s application for Bendamustine for Patients with Chronic Lymphocytic Leukemia (first line and relapse/refractory) for whom fludarabine-based therapy is not appropriate. Thank you to those who participated in the Patient Experience Survey; your responses have been used in the submission.
Contact Deborah at firstname.lastname@example.org if you would like more information
May 8th, 2012
A Thank You!CLL PAG wishes to thank all who have requested membership in CLL PAG. We now have members in most provinces and many supporting members in the US. Our next advocacy issue is in Ontario, the only Canadian province/territory where Rituxan is not available for second line treatment of CLL
– stay tuned.
May 8th, 2012
Canadian CLL Researcher Awarded GrantDr. Spencer Gibson, M.D. of the University of Manitoba has received a grant from the CLL Global Research Foundation.
Dr. Gibson's research involves the tyrosine kinase inhibitor gefitinib, currently used in treating lung cancer.
His research will assess whether the drug gefitinib can selectively kill ZAP-70 expressing CLL cells by inhibiting ZAP-70 function. CLL cells that contain the ZAP-70 protein tend to be closely associated with aggressive disease, for which there is currently no targeted treatment.
The grant of $100,000 is for one year of research funding with the possibility of a second year.
Link Here for More Info
CLL ~ Invisible Cancer
Matt Galloway of the Canadian Broadcasting Corporation (CBC) spoke with Dr. Rena Buckstein, about chronic lymphocytic leukemia. She heads the Hematology Site Group at Sunnybrook Hospital's Odette Cancer Centre, Toronto Canada. This follows the untimely death of Canadian comedian Roger Abbott, who had CLL for 14 years.
Podcast (about 8 minutes): CBC Podcast ~ Invisible Cancer
FC + RituxanRituxan (rituximab), utilisé conjointement avec la Fludarabine et la Cyclophosphamide (FCR) est le premier traitement à montrer une amélioration de la survie globale chez des patients atteints de leucémie lymphoïde chronique, jamais traités auparavant. Lien
Rituxan (rituximab) when added to fludarabine and cyclophosphamide (FC) is the first treatment to show improvement overall survival in patients with chronic lymphocytic leukemia, never previously treated. Link
Rituxan Funding Situation in Canada ~ November 2009View Here
Fludarabine and Campath Funding in CanadaClick Here to View
Genzyme Canada Medication Assistance ProgramThe maker of Campath and Oral Fludarabine, Genzyme Canada, has developed a program to help people find financial assistance to pay for their medication. This program is run in partnership with Shoppers Drug Mart Specialty Health Network.
For more information and an application form to Genzyme Canada in PDF format: CLICK HERE