News - Agenda
Gene Mutation Responsible for WM identidied by Dana-Farber Researchers
Exciting news!
Researchers at Dana-Farber Cancer Institute have identified the first gene mutation that may characterize the vast majority of Waldenstrom's macroglobulinemia (WM) cases.
More specifically, research led by Dr. Steven Treon and Zachary Hunter, and funded in part by the IWMF, discovered:
A single gene mutation in 90% of Waldenstrom patients whose DNA was sequenced.
This mutation will help to distinguish WM from other types of lymphoma, multiple myeloma, and MGUS.
This mutation produces an abnormal protein which activates the NF-kB pathway, essential for the growth and survival of WM cells.
When researchers shut down this pathway with drugs that blocked the abnormal protein, the tumor cells died. Healthy cells did not.
This suggests that new, effective treatments that target WM tumor cells directly are on the horizon.
This doesn't yet mean a cure, but we are one step closer than ever.
Dr. Treon announced the new findings on December 12th at the American Society of Hematology's (ASH) annual meeting in San Diego. A copy of the Dana-Farber press release of the ASH presentation is on the IWMF website.
The importance of this discovery is enormous. Quoting from the Dana-Farber press release, "Drugs that block the abnormal protein or other proteins in the NF-kB pathway could, theoretically, short-circuit the disease process in many patients. Some of these drugs already exist, having been developed for other conditions. Treon and his colleagues are currently working to develop others and are testing them in experimental models."
Information of past congresses:
The sixth symposium on WM in Belgium (Dutch speaking)
took place on 19 November 2011 at the University Hospital in Brussels.
In the capital of Europe nearly 40 interested people come together to attend the sixth symposium on WM: patients, partners, caregivers. Dr. Fabienne Trullemans, connected to the above mentioned hospital as a hematologist, starts with a very clear exposition of WM, the signs and symptoms, diagnosis and treatment. Newly diagnosed are reassured. All patients receive information about the current therapeutic arsenal available to treat the disease.
After lunch the audience can hear a very interesting presentation from a lawyer working at the research department of the Flemish League against Cancer: ‘The cost of care for hematologic disease for the patient’.
Satisfied and with positive feelings everyone goes home, ready to be back next year for the seventh symposium. More information: www.cmp-vlaanderen.be
The second symposium on WM in France (French speaking)
took place on September 24 in the "Plateforme Maladies Rares" at the Hôpital Broussais in Paris.
NB Waldenström France has 80 members ; 150 persons are connected to the blog on the website of the Medicalistes.
In Paris 43 persons (including 25 patients) coming from all over France attended the meeting which took place between 11.30-18.00 hours. Each participant got a packet with information on WM and on membership of Waldenström France (costs € 20 a year, deductable from tax payment) and was asked to distribute these in their home town/department.
Professor Dr. Véronique Leblond, hematologist at “Groupe Hospitalier Pitié Salpêtrie” in Paris gave a very informative lecture about stemcell transplantation, (new) medicines, clinical trials in Europe, Guy Sherwood (IWMF) presented a € 1000 cheque to WM specialist Dr. Xavier Leleu (Hôpital Claude Huriez , Lille).
More information: www.medicalistes.org/waldenstrom
Veikko Hoikkala’s report of his visit to the Ed Forum 2011 in Minneapolis.
The 16th Annual Educational Forum of IWMF took place 24-26 June 2011 in Minneapolis.
The number of participants was somewhat lower than average, 180 – 200. Out of them 2 from Israel, 1 from Australia and Europe, the rest from USA and Canada.
At the start there was an interesting guided tour of Mayo Clinic, concentrating especially on various cancer-departments.
There were speakers from leading US Cancer-institutions: Dana-Farber, Mayo Clinic, Indiana University, University of Iowa and names as Steven Treon, Robert Kyle, Stephen Ansell, Fred Hochberg, Rafat Abonour.
From the field of research there was not any dramatic break-through to inform patients. However research activities are increasing all the time. Perhaps the main direction just now is to develop new, more effective monoclonical antibodies and there are many such drugs under development.
The Old /new drug Bendamustine (Levact) raised a lot of discussions in many occasions. Combined with monoclonical antibodies this drug has given very promising results and several clinical trials are going on.
A very popular subject was the issue of Peripheral Neuropathy, a complication which affects many Waldenström patients. This was handled by Dr Michelle Mauermann and Dr Stephen Ansell from Mayo Clinic .
Partly the program was divided to separate sessions for Newly Diagnosed, Caregivers, Treatment veterans , Pain Management etc.
Dr Siegfried Janz from University of Iowa told very interesting details about usage of mice in research for cancer-drugs.
Naturally the traditional Ask The Doctor Panel led by Dr Robert Kyle collected biggest number of listeners as usually.
Forum 2012 will take place in Philadelphia , USA.
Finland,
29July 2011
NB More about the IWMF Ed Forum 2011 can be found at www.iwmf.com
DVD's of the IWMF Educational Forum 2010 in Las Vegas, Nevada and other information:
www.iwmf.com
Information ( DVD’s, abstracts etc ) of the Third International Patient and Physician Summit, held on May 1-3 2009, at Harvard Club in Boston MA:
www.wmsummit.org
Visit also www.wmworkshop.org for further information.