Quality of Life Survey Shows the Challenges of Patients and Caregivers

In 2017, CLLPAG and Lymphoma Canada surveyed 320 CLL patients and caregivers about how CLL affects their quality of life. CLLPAG has published a infographic of the findings. Among the findings: 36% of patients have waves of fatigue and 80% of caregivers experience anxiety and worry. Click here to see the infographic.

IGHV Testing Now Available in Canada

IGHV testing is now available to patients across Canada. IGHV is a “powerful predictor of duration of response and overall survival with chemoimmunotherapy (CIT). As this test may influence choice of therapy between CIT and novel agents, it is critical that providers understand how mutational status is determined and the limitations of testing.” Crombie & Davids https://doi.org/10.1002/ajh.24808

IGHV or mutational status testing is available to all patients through funding provided by Janssen Pharmaceuticals. Physicians can arrange the testing through their Janssen hematology representative. The testing will be done at the Montreal Jewish General Hospital.

TP53 testing is now available in Quebec through Sainte Justine Children’s Hospital and should be available in other provinces within the year.

CLLPAG Urges Quebec Minister to Approve Venetoclax

Venetoclax (Venclexta) was recently recommended by pCODR for conditional funding by all provinces (except Quebec) – see ebulletin #13 above. In Quebec, which has its own process, the Minister of Health and Social Services decided not to fund Venetocax. CLLPAG has written to Minister Barrette to urge him to reconsider his decision and ensure that all Canadians have equal access to this important medication.

Halifax – Psychoeducational Support Group for Adults Living Well with Blood Cancers

The last Tuesday of the month at 10:00 AM

Queen Elizabeth II Health Science Centre – VG Site
1276 South Street Floor 8B Room 138

Contact for more information:
Janice Spencer, MSW, RSW Social Work
Phone: (902) 473-4072
Email: janice.spencer@cdha.nshealth.ca

pCODR Recommends Reimbursement of Venetoclax

In a surprise decision, pCODR, the federal agency that recommends whether a drug should be on provincial formularies, has reversed its initial decision and recommended that Venetoclax be reimbursed.  This is the first time that pCODR has reversed an initial decision.  See the joint CLLPAG/Lymphoma Canada response to the initial decision – click here.

Drug Pricing Reform is a Lose-Lose for Patients

The framing of the debate around the reform of the Patent Medicines Price Review Board (PMPRB) will not benefit patients.

If prices remain at current levels, provinces will continue to slow down approval of new drugs. If prices are lower, as contemplated by the PMPRB reform, drug companies say they will delay introducing new drugs to the Canadian market. In both situations, patients get less access to new drugs that have demonstrated effectiveness.

CLLPAG has called on both parties, drug companies and the PMPRB, to reset the discussion. The way the debate is going, patients are the losers. And if patients are losers, are there any real winners?

See the full CLLPAG statement.

Making Empowered Decisions

Understanding Your Options to Get the Best CLL Care, March 24 webcast, for more information http://bit.ly/Partner1CLLhtx or see this flyer.

Calgary Alberta LLSC Blood Cancer group at Wellspring NW Calgary

Patient Information and Support Sessions.

Annual Canadian CLL Research Meeting

January 2018

Each year, Canadian and international scientists and clinicians get together in Winnipeg to discuss the latest CLL/SLL research. For the past 6 years, CLLPAG has been invited to the CLL Research Meeting to report on our activities and report back to members about the latest research. Board member Judith Watt-Watson’s report from October 2017 is posted on our website.

13th Canadian CLL Research Meeting Report

Leukemia Lymphoma Society of Canada Webcast – Immunotherapy Research

Dr Denis Claude-Roy MD FRCP(C)
February 9, 2018 (French)
February 16, 2018 (English)

Touted as a new frontier in oncology, immunotherapy is the latest option in cancer treatment. Be part of an exclusive event to understand the science behind immunotherapy from esteemed Professor of Medicine from Université de Montréal, Dr. Denis Claude Roy.

Ontario Auditor General: Cancer Patients in Ontario Face Delays and Safety Issues Related to Take-Home Cancer Treatments

December 2017

In its Annual Report released today, the Auditor General of Ontario found cancer patients who need take-home cancer treatments are facing administrative delays in starting treatments and safety issues.

Specifically, the Value-for-Money Audit of Cancer Treatment Services found patients are getting inadequate support for the proper and safe use of take-home drugs. When patients don’t have sufficient safety information and there is a lack of pharmacist experience dispensing cancer drugs, it can lead to dispensing errors, a lack of toxicity management or safe handling, inaccurate advice and insufficient information or follow-up regarding side-effects.

For more information:


Auditor General Report Finds Cancer Patients in Ontario Face Delays and Safety Issues

CLL Support Group of Montreal

Friday, January 26, 2018 – 1:30 to 3:00 pm

Click here for more information.

Shingrix: New Shingles Vaccine

December 2017

CLL patients and other immune-compromised patients have an increased risk of developing shingles. Health Canada recently approved Shingrix, a shingles vaccine for people ages 50 and older with normal immune systems. In trials, the vaccine was effective in preventing shingles in >90% of patients. The vaccine is given in two doses by intramuscular injection. The vaccine’s manufacturer, GlaxoSmith Kline reported on Dec 6, 2017 that new data from a Phase III clinical study supports the safety and efficacy of Shingrix (Zoster Vaccine Recombinant, Adjuvanted) in preventing shingles (herpes zoster) when given to adults 18 years and above shortly after undergoing autologous haematopoietic stem cell transplant (auHSCT).

Click here for more information.

Rewrite Cancer Challenge

The Rewrite Cancer Challenge is looking for patient stories to inspire and create change. For more information https://www.rewritecancer.ca


These organizations produce webinars on the latest CLL and related cancer issues.


September 2017

WANTED: Patients and family members to help design a clinical study of a new treatment for blood cancers.

Click here for more information.

A Nice Story: Why a Cancer Survivor’s Wife Designed a Low-Cost Prosthetic Bra and Gives it out for Free

March 6th, 2017

It was April 2011, when Arun, a 41 year old chartered accountant, caught some infection and fever, the doctor asked him to do a routine blood test. During the check-up, Arun was diagnosed with Chronic lymphocytic leukemia (CLL), a type of cancer of the blood and bone marrow. The term “chronic” in chronic lymphocytic leukemia comes from the fact that it typically progresses more slowly than other types of leukemia.

India Story “The doctors assured us that Arun doesn’t need any treatment right now as this was a very slow-growing cancer and there was not much we could do about it at this stage. We still went to every possible hospital in Faridabad and Delhi. We took second opinions from Tata memorial hospital, Mumbai and even from the U.S. But every doctor gave us the same opinion,” says Kavita.

Arun was kept under observation and had to go for routine blood tests and ultra sounds. The couple knew that there would be a time when these cancer cells would bother Arun’s body, but were assured that the time was far.

In October 2015, Arun was told to start with chemotherapy. But right after the first chemo, Arun went through the Richter’s transformation.

Full Story

B.C. Cancer Agency Looking for Volunteers

The Lymphoid Cancer Families study is currently recruiting families with multiple cases of lymphoid cancer (including CLL/SLL, multiple myeloma, Hodgkin and non-Hodgkin lymphoma) to participate in the study. For more information, please contact studycoordinator@bcgsc.ca or 604-675-8172.

Lymphoid Cancer Families

Venclexta, (venetoclax) approved by Health Canada for special use

October 5, 2016

This is approved but not funded by the provinces … please talk to your physician.

View Press Release

New Treatment Perspectives in CLL: Using Disease and Patient Characteristics to Optimize Outcomes

October 2015

A recent Canadian perspective…

Full Paper

FORwaRds – Academics from around the world meet to discuss Fear of Cancer Recurrence

August 2015

A key feature of CLL is that it reoccurs and the timing can be unpredictable. We go to our regular blood tests wondering if the results will show that the cancer is returning. Living with that fear is part of living with CLL. A group of academics from around the world met in Ottawa to this past summer to discuss the fear of cancer recurrence (FCR). Their broad aim is to raise awareness of FCR and promote activities, which improve the identification and treatment of high levels of FCR amongst cancer patients. They formed an ongoing group called Fear of Recurrence Special Interest Group (FORwaRdS). FORwaRds is a multidisciplinary group of clinicians, researchers and patient representatives with a special interest in fear of cancer recurrence (FCR).

They are stimulating and disseminating research, creating opportunities for education and networking on FCR. Peter Dorfman, Vice-Chair of CLLPAG was one of two patients chosen to participate in the Ottawa meeting to share what it is like to live with a cancer that always comes back.