Top 10 list of what we need to know about lymp... - CLL Support

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Top 10 list of what we need to know about lymphoma

bkoffman profile image
bkoffmanCLL CURE Hero
11 Replies

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

cllsociety.org

bkoffman.blogspot.com

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bkoffman
CLL CURE Hero
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11 Replies
wroxham-gb profile image
wroxham-gb

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

Elizabetha profile image
Elizabetha in reply towroxham-gb

Same here.  Thanks for posting this information Brian,  really helpful. 

bkoffman profile image
bkoffmanCLL CURE Hero in reply towroxham-gb

Do you still have a problem?  Just tried it and it worked well for me.

wroxham-gb profile image
wroxham-gb in reply tobkoffman

Still get the blue cube in middle only. I think Elizabeth's has same problem.

Thanks for asking.

Sue

bkoffman profile image
bkoffmanCLL CURE Hero in reply towroxham-gb

Sorry. Works for me. Do you still have the problem?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply tobkoffman

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

bkoffman profile image
bkoffmanCLL CURE Hero in reply toCllcanada

I 'll check with my web person and see what I can do. Sorry.

Peggy4 profile image
Peggy4

Blue cube for me :-(

Peggy

bkoffman profile image
bkoffmanCLL CURE Hero

Here is the direct link from LRF who produced and shared the content. It is the best I can do. Works fine for most folks . Sorry for your trouble.  Hope this is a fix. dream.presentme.com/audio20...

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply tobkoffman

I just changed my location with a VPN to New Jersey and I still get the blue screen... perhaps an Android plot against Apple users? 🤖

bkoffman profile image
bkoffmanCLL CURE Hero in reply toCllcanada

Maybe the issue is with LRF. I am hearing of sporadic problems with both Apple and Android. I have no control over LRF. Sorry.

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