Umbrella Organization of European Waldenström patient supportgroups and patients


Newsletter July 2018

Go back to newsInserted on Thursday 2 August 2018
Newsletter, July 2018
In this newsletter you find mainly information from the EHA in Stockholm, 14 – 17 June
EHA Congress in Stockholm.
  • From 14 – 17 June  the 23rd Congress of the EHA was held, this time in Stockholm.
  • There were more than 11700 attendees!
  • From EWMnetwork we were presented by Roger Brown, Susanne Öhrn and Tine van der Schaaf. Together with 10 other (patient/advocacy) organisations we had a booth in the exhibition area of the Congress. Some networking was done to get more results from EWMnetork.
  • The first day a Patient Advocacy Capacity Building Meeting was held where we were informed about EuroBloodNet, the EPAG’s and how to get the most out of the Congress.
During the following days there were a few interesting (poster)sessions about Waldenström. The presentations were very well visited, also a presentation from Janssen, the manufacturer of Ibrutinib.
Presentation of Jorge Castillo  (abstract S854) conclusion: Our interim results show that venetoclax provides a safe and effective treatment option for patients with symptomatic, previously treated WM, including those previously exposed to BTKinhibitors
Poster Presentation Jorge Castillo: (abstract PS1190)
Conclusion: Ibrutinib is a safe and effective treatment option for patients with BNS.
E-poster presentation Buske:
Conclusion: For WM pts treated in Europe, the most common reasons for initiating therapy are anemia and constitutional symptoms. Rituximab was the most commonly used agent across all lines of treatment and use of rituximab was associated with improvement in median PFS in the 2nd-line. Outside clinical trials, monotherapy is widely used even at first relapse with notable differences between countries. This large observational dataset will be an important tool to promote understanding of treatment practices and survival of WM pts outside of a clinical trial setting. 

Other news
Recently reached us the sad news that Lia van Ginneken passed away. Lia passed away suddenly on July 4. Lia put initially effort in Multiple Myeloma and Waldenström in the Netherland. In 2009 EWMnetwork was founded, representing the interests of Waldenström Macroglobulinemia (“WM”) patients on a European level and Lia van Ginneken was the first chair. Lia was active in the board till 2015.
In the newsletter of June from LC was also an interesting article mentioned about Waldenström. The conclusion in this article: Among patients with Waldenström’s macroglobulinemia, the use of ibrutinib–rituximab resulted in significantly higher rates of progression-free survival than the use of placebo–rituximab, both among those who had received no previous treatment and among those with disease recurrence. Atrial fibrillation and hypertension were more common with ibrutinib–rituximab, whereas infusion reactions and IgM flare were more common with placebo–rituximab. (Funded by Pharmacyclics and Janssen Research and Development; number, NCT02165397.)
IWMF updated the booklet “frequent asked questions” It is in several languages. Find it in:
New Board members
We are only with 5 Board Members, all WM Patients. We are searching for more board members, who can help us with advocacy in order get more effect regarding access to treatment and medication, to information on clinical trials and for research into new treatment. We are looking for WM patients or their relatives (like children) who want to travel to congresses and like to do a lot of networking.
News for second half 2018 and later

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