Newsletter: February 2018

Happy New Year & greetings to you all

Patient seminars: save the date
Auckland on 28 February at North Shore Hospital Auditorium
Wellington on 8 March at Russell McVeagh, Data Dimension House
Click here or visit our Facebook page for details.

I’m delighted that Dr Robert Weinkove from CCDHB and the Malaghan Research Institute has agreed to speak to us about his work with CAR T-cell therapy, a promising new treatment for blood cancers including myeloma.  Rob will be happy to take questions and join us for tea/coffee and a chat after the talk.  Please do spread the word and feel free to bring family and supporters along.  We are again most grateful to Russell McVeagh for making their lovely venue available.

For some background on CAR (chimeric antigen receptor) T-cell therapy see our website.

We had a great turnout for the November session with Dr Henry Chan on his analysis of myeloma statistics and survival data.  This was very well received and we were most grateful to Henry for making the trip from Auckland to talk to us. Henry will also be speaking at this month’s Auckland seminar.

New clinical trial
A new multinational clinical trial for relapsed or refractory myeloma patients is currently recruiting in Wellington.  Information on the study can be found here.

The private Facebook group now has 64 members and there has been plenty of active discussion over the holiday period. The individual patient experiences are not always positive, and we do appreciate people sharing difficult aspects of their journey with the group.

Burden of disease report
We have been very fortunate to receive a generous grant from Janssen-Cilag to commission a myeloma burden of disease report. The report will estimate the incidence, prevalence and costs to society of myeloma in New Zealand, including healthcare costs and costs to families and patients. Preliminary planning is well underway and the project is likely to take at least 6 months to complete.

The report will be the first of its kind in blood cancers in New Zealand and as well as raising awareness of myeloma its launch will help create a platform and framework for improvements in treatment pathways and outcomes.
I hope to see you at the upcoming seminars in Wellington and Auckland.
We would also like to plan a meeting in the South Island in the near future.
Warm regards

Ken Romeril