Partner Spotlight: How Can LLS Resources and Communities Help You?

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Topics include: Living Well

Joining Patient Power from the Leukemia & Lymphoma Society, Dr. Gwen Nichols and Dr. Larry Saltzman discuss the mission and services of LLS and how these services can impact patients in a positive way. In this replay, Dr. Saltzman also shares how the Leukemia & Lymphoma Society has benefitted him as a CLL patient. Dr. Gwen Nichols is the Chief Medical Officer of the Leukemia & Lymphoma Society, and Dr. Larry Saltzman is the Executive Research Director for LLS.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

And also, a friend of mine, Dr. Larry Saltzman, joins us from Sacramento, California.  Larry had been a family physician there, and then he was diagnosed with CLL.  Larry is the executive Research Director now for The Leukemia & Lymphoma Society.  Larry, thank you for joining us. 

And I'll mention that Larry had a windy road with leukemia, fortunately doing well now, and we're going to discuss that in a separate interview, but I'm glad you're doing well, Larry.  

So, Larry, you recognized that there was an opportunity to do more with discussion and community.  So help us understand what you developed, and then Gwen will explain how that fits in with the whole range of services that LLS does.  

Having said that, collecting medical records from different academic and community centers is somewhat challenging, and so we went forward with this project in a multiphase approach.  And the first phase was building what we referred to as the LLS community, which is a social type of network for blood cancer patients now used by over 4,500 folks around the country. 

And it's more than a social network.  It's a way for us to share educational content.  It's a way for patients to join discussion groups of like cancers and experiences, so they can talk with each other, and it's a way for us to do patient?centered research where we ask them questions three times a week that they can answer for us.  And we get information on treatments and advocacy issues, access to care issues and the like. 

And when Larry tells the story of how he ran with Team in Training for the Boston Marathon, I'm thrilled that he found us that way, but I really—my first thought was I wish we had found him earlier, and why can't we reach patients at all stages in their cycle with blood cancers.  And so I would love for the people in Patient Power to know about the services that we have. 

We have a really fantastic information resource center.  These are highly trained medical professionals who can answer questions, tie patients into resources, talk to caregivers.  It expands all across services including a really extraordinary clinical trials resource center.  This is different than going to clinicaltrials.gov and getting a list of trials.  It is actually a one?on?one interaction with someone who can look at your specific needs and your specific diagnosis and help you pare down that list of 72 trials into a list you can bring to your doctor.  

Larry, from your point of view, what is the benefit to patients as they get involved with The Leukemia & Lymphoma Society, get involved in the community, take advantage of the information resource center and other services that the LLS has?  It seems like you don't feel alone, and your information can be pooled together to move things forward in care.  

And for our audience, take a look at our interview that we are also doing with Larry so you can hear more of his personal story.  Larry, all the best to you. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on April 19, 2017