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NEWLY DIAGNOSED

If you have recently been diagnosed with CLL, you probably have questions. 

Information about CLL

What we are doing to defeat CLL

List of CLL specialists around the world

(Provided by ACOR) 

FEATURED VIDEO

Andrew Schorr, host of Patient Power, interviews Dr. Barbara Eichhorst, from Cologne, Germany, on treatment options for the elderly.    

Improved Treatments on the Horizon for Elderly CLL Patients

CLINICAL TRIALS & YOU 

Are you looking for information about specific clinical trials?  

For a comprehensive list of available CLL clinical trials, visit clinicaltrials.gov     

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JUNE 16TH 

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May 2013 

Greetings!

We are pleased to bring you another issue of Tidbits. In this issue, we report on last week's board meeting and provide insights on where our organization is heading. To that end, Dr. Keating provides an update on his research to-do list.

CLL Global Board Meeting:   

CLL Global's Board of Directors gathered in Houston last week to review the organization's current financial position and plan for the future.

The meeting featured a review of 2012. Last year proved to be a successful year for fundraising as contributions increased by 27%. We have already begun to put these funds to work. During the first quarter of 2013, sponsored research agreements were signed totaling over $1 mil. in grants. This amount does not include the latest round of peer-reviewed grants which represents an additional $400,000. (See March's Tidbits for a discussion of these grant recipients and their projects.)

Chair of the Scientific Advisory Board (SAB) Dr. Bill Plunkett 

SAB reviewing grant proposals.

commented on the most recent application cycle. The SAB members noted that many of the applications lacked short-term clinical relevance. Per Dr. Plunkett, the SAB is sticking to the founding principle that grants must be clinically applicable within two to three years of funding.

The board also authorized funding to facilitate the training of an additional fellow interested in chronic lymphocytic leukemia. CLL Global is currently supporting the fellowship of Dr. Ohad Benjamini from Tel Hashomer, Israel, with the hope that Dr. Benjamini will return to participate in the CLL Israeli Research Consortium. More details on this educational training should emerge in the next few months. The board also heard an update on an upcoming educational meeting in South America. In November 2013, Uruguay will host the first CLL meeting in South America with support from CLL Global. Ultimately, this meeting may lead to the formation of a CLL network in South America. Both of these projects fulfill the global focus of our organization.

CLL Global is truly fortunate to have such a dedicated group of board members. Our directors come from across the country at their own expense to guide the organization in its efforts to accelerate CLL research. Several of our directors have been with the organization since the beginning. Others have more recently joined us and brought a fresh perspective to the conversation. We are grateful for the time and energy that each devotes to improving the prospects for current and future generations of CLL patients.

CLL Global's To Do List 

Dr. Michael Keating, President & CEO

Over the last few years, we have witnessed major advances in patient survival, new agents and genetic information. Some call me overly optimistic, but I truly believe the pieces are in place for significant progress to be achieved in the next few years. That being said, we still have many items requiring our attention. Here are a few...

1) Identify better therapeutic options for certain sub-groups. 

The elderly, 17pdel- and 11q- are three of the groups that need better therapy options. We need to develop specific approaches for these sub-groups.

2) Expand clinical trial access for patients with comorbidities.

Clinical trial access is often limited to patients who have not had a previous cancer within the last five years. Patients also need to have a favorable performance status which tends to rule out those who have comorbidities such as cardiac disease, chronic obstructive airway disease, diabetes, etc. We need clinical trial options for patients with these comorbidities. 

3) Prevent immune system & DNA damage related to therapy.

CLL patients often die of an associated malignant disease which develops after treatment or from serious infections presumably related to the immune system. One of our goals is to remove DNA damaging drugs from the patient's initial therapy. Hopefully, this will keep a number of patients in long-term remission without running the risk of second cancers such as acute leukemia or myelodysplastic syndrome (MDS).

4) Prevent the immune system from destroying cells.

A number of CLL patients develop antibodies that attack and destroy red cells, platelets and to a lesser degree neutrophils. One of these conditions, immune thrombocytopenic purpura (ITP), results in dangerously low blood platelet counts. We need to better understand which patients are likely to experience ITP and which treatments are most effective in overcoming this problem.

5) Reduce the likelihood of CLL patients developing shingles.

No one wants to deal with the itching, tingling and severe pain associated with shingles. Unfortunately, CLL patients have a  high likelihood of developing shingles. CLL patients and other individuals with weakened immune systems are advised to avoid the shingles vaccination because it contains a live virus. The concern is that patients may develop modified "shingles" from the vaccine virus strain; no research has been conducted in CLL to evaluate this possibility. Alternative protection strategies need to be developed for CLL patients and others with compromised immune systems.

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