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How we treat Richter Syndrome... from CLL experts at the Mayo Clinic

Richter syndrome (RS) is defined as the transformation of chronic lymphocytic leukemia (CLL) into an aggressive lymphoma, most commonly diffuse large B-cell lymphoma (DLBCL). RS occurs in approximately 2% to 10% of CLL patients during the course of their disease, with a transformation rate of 0.5% to 1% per year.

Richter's can occur at any time, but the length of time to first treatment and chemoimmunotherapy are factors.

March 12, 2014


On March 10, 2014, an unprecedented unification of more than 30 Canadian patient groups, physicians and health care charities and led by Kidney Cancer Canada, launched CanCertainty, a campaign calling for equal and fair treatment for all Canadians.

CanCertainty represents a growing coalition of organizations working together to ensure all Canadian cancer patients will have fair and equal access to the treatment they need, whether intravenous (IV) or oral. As an umbrella organization focused on advancing patient and caregiver interests, the Canadian Cancer Action Network (CCAN) is proud to support this effort financially as we lend our voice to the following call for action to the governments of Ontario,Nova Scotia, Prince Edward Island, New Brunswick, and Newfoundland and Labrador to join the rest of the country in providing fair and equivalent access to oral and IV anti-cancer treatments.

According to the attached white paper developed by the Cameron Institute, a not-for-profit, public policy think tank, “it is estimated an investment of $28 - $93 million will ensure all patients in Ontario have access to oral medications. The investment is also estimated to lead to at least a 17 per cent reduction in overall chemotherapy unit costs. The same holds true, proportionally, for Nova Scotia and Newfoundland and Labrador as well.” For more information, including the CNW press release, relevant background information, please visit the link below.


White Paper
March 11, 2014


Brian has been posting interviews with CLL expert doctors from iwCLL, ASCO and ASH on his blog.

Check it out and bookmark!
Feb 17, 2014

Imbruvica (Ibrutinib) FDA approved in previously treated CLL

The U.S. Food and Drug Administration today expanded the approved use of Imbruvica (ibrutinib) for chronic lymphocytic leukemia (CLL) patients who have received at least one previous therapy.
This applies to use in the U.S. only. Hopefully the Health Canada approval will follow and then the pCODR funding studies and recommendations to the provinces can begin. This can be a lengthy process. For more information on Cancer Drug Approvals in Canada here is a good overview...

Approval Process PDF

February 12, 2014

A Canadian Perspective on the Treatment of Unfit Patients with Chronic Lymphocytic Leukemia

This paper discusses two major issues physicians encounter when treating unfit patients with CLL: (i) What factors enter into the decision that a patient is unfit for FCR therapy? (ii) What are the best treatment options for those patients who are deemed unfit? In addition to reviewing the current evidence, the regional practices of three Canadian experts from Nova Scotia, Quebec, and Alberta will be explored.
Feb 3 , 2014

Health Canada/GSK on Arzerra (ofatumumab) and HepB

GSK, in consultation with Health Canada, would like to inform you of important new updates to the recommendations for screening, monitoring and management of Hepatitis B reactivation in patients treated with ARZERRA™ (ofatumumab).

ARZERRA™ is an anti-CD20 antibody that is authorized in Canada under a Notice of Compliance with conditions, for the treatment of patients with chronic lymphocytic leukemia (CLL) refractory to fludarabine and alemtuzumab.
January 27, 2014

New CLL trial in Toronto

New Phase 1/2 clinical trial for Ruxolitinibn by Dr. Spaner at Sunnybrook in Toronto for 65 and over who are unfit for FCR... also 17p deleted of any age.
January 10, 2014

LLC en français?

This is a link to a French CLL/SLL website... might give it a try.
Dec 10 , 2013

How Cancer Drugs are Approved and Funded in Canada

This tutorial explains the process that decision makers in Canada follow to decide whether to publicly fund new cancer drugs. You’ll learn who is involved in this process, and how health benefits, costs and values play into the decision. At the end of the tutorial, you should be able to answer the following questions:

  • ◊ Which groups make decisions in Canada about publicly funded cancer drugs and how are those decisions made?
  • ◊ How do we know if drugs work and are better than current treatment?
  • ◊ How do costs and benefits fit into the decision making process?
  • ◊ What is a fair decision?
  • ◊ How are decision makers held accountable to the public?
  • ◊ How can you get involved in cancer drug funding decision making panels?

The principles described in this tutorial also apply to decisions about other non- cancer drugs and new health care technologies.
Nov 2, 2013

Gazyva, obinutuzumab...FDA APPROVED

The U.S. Food and Drug Administration today approved Gazyva (obinutuzumab) for use in combination with chlorambucil to treat patients with previously untreated chronic lymphocytic leukemia (CLL).
Nov 1 , 2013

Canadian CLL Study

Fludarabine-containing regimens are typically used in the frontline treatment of chronic lymphocytic leukaemia (CLL), but relapse is common and response rate with re-treatment is generally inferior to response as first-line treatment.There is thus a need to develop new and non-cross-resistant drug combinations for relapsing patients.

Inhibition of histone deacetylases (HDACs) using pharmacological agents, such as depsipeptide, suberoylanilide hydroxamic acid and valproic acid (VPA) is a novel strategy to treat such patients.
Oct 30, 2013

9th Canadian CLL Meeting Report - Winnipeg, MB, October 3-4, 2013

The 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.

Oct 10 , 2013

New FDA warning for Rituxan (MabThera) and Arzerra (ofatumumab) with regards to reactivation of hepatitis B virus (HBV) infection

The U.S. Food and Drug Administration (FDA) has approved changes to the prescribing information of the immune-suppressing and anti-cancer drugs Arzerra (ofatumumab) and Rituxan (rituximab) to add new Boxed Warning information about the risk of reactivation of hepatitis B virus (HBV) infection.

The revised labels also will include additional recommendations for screening, monitoring, and managing patients on these drugs to decrease this risk. PLEASE CONSULT YOUR DOCTOR. See full information here
Sept 25, 2013

Increased risk of second malignancies in CLL as compared with follicular lymphoma patients: a Canadian population-based study

Treated CLL patients had a 1.7-fold increased risk of second cancers compared with untreated CLL patients. As compared with untreated FL patients, untreated CLL patients had a two-fold increased incidence of second malignancies.

Chronic lymphocytic leukaemia patients have an inherent predisposition to second cancers and the incidence is further increased by treatment.

Sept , 2013

IPI-145 going into Phase 3 trials

Infinity Pharmaceuticals, Inc. today announced that, in the fourth quarter of 2013, it expects to initiate a Phase 3 trial of IPI-145, its potent, oral inhibitor of phosphoinositide-3-kinase (PI3K)-delta and PI3K-gamma, in patients with chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL).

This randomized study is designed to evaluate the safety and efficacy of IPI-145 dosed at 25 mg twice daily compared to ofatumumab in approximately 300 relapsed or refractory patients.
Aug10 , 2013

Revlimid (lenalidomide) CLL Trial Discontinued

Celgene Will Discontinue Phase III ORIGIN® Trial in Previously Untreated Elderly Patients with B-Cell Chronic Lymphocytic Leukemia

Based on an imbalance in deaths, specifically 34 deaths out of 210 patients in the lenalidomide arm compared to 18 deaths out of 211 patients in the chlorambucil arm, FDA placed the study on clinical hold. No specific causality for this imbalance has been identified to date.

Results from the CLL-008 study will be presented at an upcoming medical conference.
July 20, 2013

Flow Cytometry ~ Everything you need to know and more...

Flow Cytometry is a blood test used to diagnose CLL. This video tutorial education program explains how flow cytometry actually works.

This takes about 12 minutes to view... Will NOT work on iPad etc. Needs Flash Player 8

Flow Tutorial LINK HERE

Many other tutorials : LINK HERE

Also see the "How does FISH work?" LINK HERE
Nov 7, 2011

New CLL Website
Livingwcll Click Image Above

Now Available

Link Here to CLL TRACKER
The CLL TRACKER has undergone a major revision...

Understand Blood Labs

One of the most complete up-to-date website about blood tests can be found at this link. Well worth bookmarking for future reference.

Lab Tests Online

Guide to Lab Test for CLL

lab_test Click Here

Thanks to Beth for this link

Guide to Bloodwork ~ Complete Blood Count

This is an excellent resource you can save to disc and refer to.
Click Here for PDF

Blood count ranges can be found here:
Note that these ranges do vary from lab to lab and country to country.
Click Here
Meetings and Events

The Leukemia Association of Ottawa

A support group based in Ottawa, Ontario dedicated to helping people with Leukemia and their care-givers, friends, and family.

Meetings are the 4th Tuesday of every month
7:00pm - 9:00pm
Riverside United Church,
3191 Riverside Drive (south of Walkley Rd)

Link to Website

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