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Bad to the Bone


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High Cost of New Medicines

'While Health Canada has approved the use of Imbruvica, which patients could have to take for the rest of their lives, provinces have yet to decide whether they will foot the annual $100,000 per patient bill.'

Canadian cancer specialists meet next week to discuss whether to recommend Imbruvica for provincial coverage.

Dec 12, 2014

pCODR... Ofatumumab/chlorambucil

The pCODR review committee pERC, has issued a draft recommendation that ofatumumab (Arzerra) and chlorambucil NOT be recommended for funding for Canadian CLL patients unsuitable for fludarabine.

There is an appeal process and the final recommendation will be made at a later date.

Decision PDF
Dec 4, 2014

Gazyva ... Health Canada Approved

Roche Canada announced that Health Canada has approved GAZYVA™ (obinutuzumab) to be administered in combination with chlorambucil chemotherapy for the treatment of people with previously untreated CLL.

This is approval for safety and efficacy. It is not available or funded in the clinic yet.

Link Here
Nov 24, 2014

Imbruvica (ibrutinib) gets Health Canada Approval

Janssen Inc. announced today Health Canada has approved IMBRUVICA™ (ibrutinib) for the treatment of the blood cancer chronic lymphocytic leukemia (CLL). It is indicated for the treatment of patients with CLL, including those with 17p deletion, who have received at least one prior therapy, or for the frontline treatment of patients with CLL with 17p deletion.

In CLL, 17p deletion is a genetic mutation that has been associated with poor treatment outcomes.

This DOES NOT MEAN IT IS FUNDED by the provinces yet... it is the first step...

Press Release
Nov 19, 2014

BCCA in Decline

' British Columbia (BC) Cancer Agency has had an international reputation for excellence in care and research. But the foundations of that success are crumbling as patient wait times increase, staff workload surges, oncologists quit, and burnout becomes common, according to news reports.

The deteriorating conditions have sparked a letter of protest from three top doctors at the center, a copy of which was obtained and excerpts reported by a leading Canadian newspaper, The Globe and Mail.' See link below...

Medscape Article

Globe & Mail

BCCA Research at ASH 2014
Nov 6, 2014

UK ofatumumab/chlorambucil recommended

The National Institute for Health and Care Excellence (NICE) has issued draft guidance recommending GlaxoSmithKline's Arzerra (ofatumumab) in a form of leukaemia. NICE, which provides health guidance for the NHS in England and Wales, said the drug was a cost-effective option in combination with chlorambucil for untreated chronic lymphocytic leukaemia (CLL) in people who are not eligible for treatment with fludarabine combination therapy and for whom bendamustine is unsuitable.

Ofatumumab’s list price is £182 for a 100 mg vial and £1820 for a 1000 mg vial. Assuming 6 cycles and no drug wastage, the mean cost of a treatment course for ofatumumab at its list price is £11,466 for 6300 mg. The company has agreed a patient access scheme with the Department of Health that makes ofatumumab available with a discount on the list price.
Nice link
Nov 4, 2014


DailyMed provides trustworthy information about marketed drugs in the U.S.

DailyMed is the official provider of FDA label information (package inserts).

This new redesigned Web site provides a standard, comprehensive, up-to-date, look-up and download resource of medication content and labeling found in medication package inserts.

To view a specific section in the listing, click or tap on the 'orange plus, beside a topic. The information is also available in PDF format download

This particular page link is for ibrutinib, but you can search any drug in the database of FDA approved treatments...
Link Here
Oct 21, 2014

ibrutinib/gazyza combo deal

Pharmacyclics Enters Into Agreement with Roche to Evaluate IMBRUVICA® and GAZYVA® in Lymphoma and Leukemia

[i] Pharmacyclics, Inc. announced that it has entered into a master clinical drug supply agreement with Roche to evaluate the safety, tolerability and preliminary efficacy of IMBRUVICA® (ibrutinib), an oral Bruton's tyrosine kinase (BTK) inhibitor, in combination with GAZYVA® (obinutuzumab), a new CD20-directed antibody that attacks targeted cells both directly and together with the body's immune system, in patients with non-Hodgkin Lymphoma (NHL) and Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL).

The agreement allows for multiple studies to be considered and conducted. Initially, a Phase 3 study will be conducted by Pharmacyclics in CLL/SLL.

Press Release
Oct 15, 2014

Nova Scotia Cancer Drug Funding

A coalition of 35 Canadian organizations wants Nova Scotia to improve access to cancer medication.

CLL Patient Advocate on the front lines in this battle

Oct 9th, 2014

Gazyvaro, not approved in U.K.

The National Institute for Health and Care Excellence (NICE) has issued new draft guidance that does not recommend Roche's Gazyvaro for untreated chronic lymphocytic leukemia.

“Although obinutuzumab is a clinically effective treatment, there were too many uncertainties in the company’s submission and we cannot be confident that it is an effective use of NHS resources," said NICE's chief executive, Andrew Dillon.

"With limited resources we need to ensure that each treatment we recommend gives patients not only the best care but is also of the best value to the NHS.”
NICE Guidelines Document
Oct 3rd 2014

October LLSC CLL Patient Meetings

Making Informed Decisions for Chronic Lymphocytic Leukemia: Standards of Care & Clinical Trials





Oct 19, 2014

Infusion Reaction to ARZERRA

PUBLIC COMMUNICATION - Health Canada Endorsed Important Safety Information on ARZERRA

GlaxoSmithKline Inc., in consultation with Health Canada, has informed health care professionals of important new updates to safety information regarding infusion reactions related to ARZERRA™.

Additional information may be found at the link below...
August 6, 2014



2015 International CLL Education Conference

April 23-25, 2015

Niagara Falls Ontario Canada
Priority registration will be given to
CLL PAG members

July 20, 2014

Zydelig (idelalisib)

Zydelig is FDA approved in combination with rituximab for patients with relapsed CLL AND as a single agent (no rituximab) for patients with follicular lymphoma / small lymphocytic lymphoma who have become refractory to rituximab AND alkalating agents (bendamustine, chlorambucil, Cyclophosphamide).

Cost in the US are expected to be in the ballpark of $7200 a month plus rituxan, for a total of about $12,000 monthly sccording to some Wall Street pundits...

July 23 , 2014

EU approves Arzerra firstline combined with Chemo

GSK and Genmab receive EU authorisation for Arzerra™ (ofatumumab) as first-line treatment for chronic lymphocytic leukaemia (CLL) in combination with chlorambucil or bendamustine for patients ineligible for fludarabine-based therapy.
July 4, 2014

Two CLL treatments start Canadian process for funding recommendation to the provinces

Treanda(in combination with rituximab) aka bendamustine/rituxan BR has started the pCODR process for recommendations to the provinces (except Quebec) for first line CLL only. This follows on a previous application for Arzerra, aka ofatumumab, combination with chlorambucil, for the treatment of patients with chronic lymphocytic leukemia (CLL) who have not received prior therapy and are inappropriate for fludarabine-based therapy.



June 10, 2014

International CLL Group Tops 1000 Members Online

The CLL Support Association (CLLSA) is a patient led support charity founded in the UK In 2005. The remit of the CLLSA is to provide support to CLL/SLL patients and their families by keeping them informed of recent and relevant developments in CLL/SLL treatment and research and to provide opportunities for awareness raising and mutual support. The association has a dual role of encouraging education and self development while working to improve access to CLL/SLL treatments and care that will improve outcomes.

CLLSA at HealthUnlocked brings together an international on-line community to allow sharing of experiences of living with CLL/SLL within a supportive group who do "get it", supported by reliable international information resources and perspectives. This partnership will with your help continue to develop as a resource that helps many

May 9, 2014

WHO report on antibiotic resistance

In a first-of-its-kind report, World Health Organization (WHO) announced today that bacterial infections that can’t be treated with the antibiotics of last resort have emerged in every part of the world, which means that patients who pick up E. coli, pneumonia or staph infections don’t have an effective way to control their illnesses.

In some countries, more than half of people infected with K. pneumonia bacteria won’t respond to carbapenems. A similar percentage of patients with E. coli infections won’t be helped by taking fluoroquinolone antibiotics.

Fairly chilling report for the immunocompromised, like CLL patients...

LINK HERE for full report ...a large .pdf file
May 1 , 2014

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

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

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 in CLL
Livingwcll Click Image Above

Click Image Below to Donate

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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