Blood Cancer/CLL Support Group and Patient Meetings

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

The last Tuesday of the month at 10:00 AM

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

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

Toronto Patients: Are you interested in a CLL-specific support group? CLL Society is interested in hearing from you https://toronto-cll.questionpro.com

Calgary Alberta LLSC Blood Cancer group at Wellspring NW Calgary

Patient Information and Support Sessions.

CLL Support Group of Montreal

Contact – Pascale Rousseau:  pascale.rousseau@lls.org

Making Empowered Decisions

https://www.patientpower.info/events

Events

If you know of an educational event that would be of interest to someone affected by CLL, please let us know by email at cllpag.canada@gmail.com.

SURVEY FOR PATIENTS USING VENETOCLAX AND RITUXIMAB COMBINATION

CLL Patient Advocacy Group (CLLPAG) and Lymphoma Canada are preparing a submission for the pan-Canadian Oncology Drug Review (pCODR) for:

Venetoclax (Venclexta) and rituximab (Rituxan)  the Murano Trial,  for the treatment of patients with relapsed/refractory chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).

The survey provides us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.

You need to have received or currently be receiving treatment with venetoclax and rituximab as a combination therapy. You do not need to live in Canada to complete this survey.

BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS TREATMENT IN CANADA.

The survey will be open until midnight Pacific Time on Wednesday, October 10th and should only take 10 minutes of your time.

You may access the survey by clicking the link below.

https://www.surveymonkey.com/r/CLLPAG

SURVEY ON PARTICIPATING IN CLINICAL TRIALS

The research team at the Ottawa Hospital is planning a clinical trial to see how well a new blood cancer therapy works and to see how safe it is as a treatment for blood cancers. Very small clinical trials have been done so far and have shown promising results. To ensure these results are as promising as they appear, a larger trial needs to be conducted.

To better plan our Canadian clinical trial, we want to hear from people who are currently being treated, or have been treated, for blood cancer. We want to hear your views about clinical trials for new therapies for blood cancer.

We need your help! Your views and opinions are important for us to hear so we can take your experiences into account.

What are we asking? If you would like to share your views, simply click on the link provided to access our survey. The survey will take about 20 minutes to complete and is anonymous. At the end of the survey you will have the option of entering your email for the chance to win an iPad.

If you have any questions about the survey, please contact Gisell Castillo at gicastillo@ohri.ca or call 613-737-8899 ext 71578.

Thank you so much for your time and consideration.

The GO CART Research Team

Patient Surveys:

CLLPAG is helping ‘Save your Skin Foundation’ promote the following survey:

All.Can international cancer patient survey specifically focuses on waste and inefficiency in cancer care and treatment. The patient survey has just launched in Canada (in English and in French) and we are looking to reach as many cancer patients, and their families, as possible and with as broad a range of cancer types as possible.

http://www.myonlinesurvey.co.uk/allcan_language/ca/ 

The survey originated in the UK, and has been piloted there, but has now been further developed and is being made available in 11 other countries around the world, including Canada. For information about the other countries the survey will be available in and for further information about All Can, visit the All.Can website.

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.

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.

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

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:

http://www.cancertaintyforall.ca/ontario

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

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.

WEBINARS

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

GO-CART

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.

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