Tuesday, April 19, 2016
Monday, April 18, 2016
What Does a CLL Patient and Advocate have in Common with a Diabetes or HIV or RA or Psoriasis Advocate: Plenty
Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.
Friday, April 15, 2016
Survey to help Canadian CLL (chronic lymphocytic leukemia) Patients
The Canadian regulatory system for the approval of new medicines is very similar to Australia, but different than in the USA. Lymphoma Canada It is currently preparing submissions to their decision makers for the following treatments:
· Ibrutinib (Imbruvica) for patients with previously untreated CLL for whom fludarabine based treatment is considered inappropriate
· Ventetoclax (ABT – 199) for patients with relapsed/refractory CLL
Lymphoma Canada like Lymphoma Australia can survey patients and caregivers to provide data to regulators on the side effects and quality of life experienced by those on current therapies and how a new therapy may improve the quality of life for patients. This information can then help the regulators better understand the value of new therapies for patients and their families.
HOW CAN ANY CLL PATIENTS HELP?
Please complete the survey below for Lymphoma Canada. You do not need to live in Canada to complete this survey.
The survey will be open until midnight (Pacific Time- Canada) on Wednesday, April 20th and should only take 10 minutes of your time.
You may access the survey by clicking the link below.
Monday, April 11, 2016
Patient Survey, New CLL support groups, Life at the Beach, and Living Well with CLL (chronic lymphocytic leukemia)
It’s been a very busy year and this week I spent a few days away from my patients and my online and live support group efforts just walking, reading, and resting at a nearby state park on the beach. It was wonderful!
As I prepare to speak at a symposium at the 2016 European Hematology Association Congress in Copenhagen in June, I am asking you to please consider completing our Reader Poll [https://asktellq12016.questionpro.com/] on how we patients and caregivers make decisions about therapy. It takes less than 5 minutes to complete. Many thanks to the 190 folks who have already done so! We’ll present the aggregated results in a future issue of The CLL Tribune.
In our live support group efforts, we are forming 2 new patient and caregiver support meetings: Charlotte, NC and Tampa FL.
• If you live in Charlotte, NC and are interested, please complete the online survey to indicate your preferences for days and times. [https://charlottegroup.questionpro.com/]
• If you live in Tampa, FL and are interested, please complete the online survey to indicate your preferences for days and times. [https://tampa.questionpro.com/]
We look forward to getting started. For those interested in getting a CLL support group going on the west side of the LA Basin, or in attending our Orange County group that meets at UCI, or the group that meets at City of Hope, please send us an email at support@CLLSociety.org and we will provide you with the necessary information.
Find out about other’s experiences with support groups in the Support area of the Living Well with CLL section of the website. [http://cllsociety.org/living-well-with-cll/support/] Teresa Altemeyer wrote a great article in the latest issue of The CLL Tribune about The Value of Support Groups – A Personal Perspective about how she was asked by her CLL specialist to facilitate a support group in Indianapolis, Indiana and the positive effect it had on her life. Check it out. [http://www.cllsociety.org/newsletter/quarter-1-2016-volume-2-issue-1/living-well-with-cll-quarter-1-2016-volume-2-issue-1/value-support-groups-personal-perspective/]