Friends
Dr. Leonard is a great teacher and this week we share his top 10 list of what we need to know about lymphoma on our nonprofit's website: cllsociety.org.
Remember that any cancer that arises from a lymphocyte is a lymphoma, that of course includes us, so this is a relevant discussion.
While not specific to CLL, it helps us see where our brand of lymphoma fits in and reviews overriding principles in lymphoma management. Well worth a look. And it’s fun.
We also be listing several upcoming meetings including those by LRF and Patient Power.
Finally, if you haven’t completed our 5 minute survey on how you choose your therapy, please, please join the 300+ who already have and help us generate some strong data to share with CLL researchers, doctors, payers, and industry and make our voices heard. Industry and doctors and payers love data.
I am just back from an amazing meeting called HealtheVoices with 90 other online health advocates blogging and tweeting on HIV and diabetes and arthritis and mental health and inflammatory bowel disease and psoriasis and other other cancers. I learned so much from my younger friends in the e-advocate world, though I don’t think I could ever cut my videos down to 6 seconds as needed for VINE and I am not sure I that I want to. Hard to imagine Dr. Kipps answering a question in 6 seconds. Although the CLL Society does have an active Facebook page (please like us), I still don’t really get Instagram or Twitter. Does the CLL community really want to learn and share from these social media sources? I suspect not.
I wrote a piece for my blog (bkoffman.blogspot.com) on what all we patient advocates all have in common whether we are a 20 something with HIV or 80 something with prostrate cancer.
Stay strong.
We are all in this together.
Brian
Hi Brian
DrLeonard's video is not working for me. Only get a cube in middle of screen with ?? .
Just thoughtI would let you know. Anyone else with this problem.?
Many thanks.
Sue
Same here. Thanks for posting this information Brian, really helpful.
Do you still have a problem? Just tried it and it worked well for me.
Still get the blue cube in middle only. I think Elizabeth's has same problem.
Thanks for asking.
Sue
Sorry. Works for me. Do you still have the problem?
I get a nothing from Canada... might be copyright blocked... for some reason... tried it in 3 browsers on iDevices... just a blue screen...
chris
I 'll check with my web person and see what I can do. Sorry.