Friday, October 4, 2013

5 Things I Learned at the Lymphoma Conference

Friday evening. Sipping a glass of wine with Stacy in a conference ballroom in Brooklyn, NY. We've just met Scott and Joanne, Burt and Kathleen. We get to chatting and there's an instant connection as lo and behold, Scott and Burt are also follicular lymphoma patients/survivors. But I suppose that's a bit expected. After all, wer'e in Brooklyn for the Lymphoma Research Foundation's 18th National Educational Forum. Over the course of a 2.5 days, we heard presentations from some of the country's leading lymphoma doctors and researchers. It was a wealth of information and a lot to take in. But I'm glad to have gone, and grateful to LRF and the dozens of doctors who participated.


My running route on Saturday morning: Across the Brooklyn Bridge at sunrise


Here's what I learned

1. There's abundance of life after cancer. That's a quote from Kelly Payne who gave a short speech about her survivorship story. And it's not that I related to her story. Different disease. Different treatment. Different prognosis. But there's was a palpable sense of hope and optimism throughout the conference -- not just from the oncologists who seem to view this as a boon time in terms of lymphoma drugs being developed --  but also from the patients. At first blush, you'd think a room full of 500 patients and their families would be depressing -- people desperately searching for an answer to their cancer question, for a rope to grasp. But that wasn't the vibe at all. It was living proof of the progress being made, and of the resiliency of individuals. 

2. Cats can have vitamin c deficiency. And apparently, that can cause leukemia in felines. Or so said one participant. No, she wasn't a doctor. Yes, she wanted to know if she should take vitamin C supplements.

3. I'm in the right place. It's so important to have a good, trusting relationship with your oncologist. Different oncologists have different approaches. And what works for you may not work for me. But the combination of Dr. L (who happened to co-chair this national forum) and the support of Dana-Farber is right for me. The combination of research knowledge and lymphoma expertise, responsiveness and approachability, and compassion and kindness may be one of the reasons I look forward to my quarterly visits. It's comforting, too, to know that the resources of one of the world's leading cancer centers is behind her (and me).

4. Cure. Long-term remission. Quality of Life. It doesn't matter what you call it. The drugs being developed now - idelesalib, ibrutinib among others -- promise to usher in a new era in lymphoma care that was first promised with the introduction of rituximab in 1997. 

5. Lymphomaniacs only. When we sat down at a table at Friday evening's networking reception, Scott's first question was: "Are you lymphomaniacs?" Right then, we knew it'd be a good weekend.

4 comments:

  1. Great post. Glad you enjoyed the weekend.
    Bob

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  2. Hey Bob:
    Thanks... You'll be happy to know that the first thing I thought of when Scott asked if we were lymphomaniacs was: Is this LymphoBob the blogger?
    --michael

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  3. The conference sounded great -- and I imagine the running route was as well. Were there any Dana-Farber docs (or other patients) there?

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  4. Several DF Docs there besides Dr. LaCasce, there was Dr. Freedman, Dr. Andrea Ng, Karen Fasciano and maybe one other. Also met a couple of DF patients.
    --mb

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