DFCI’s NET cancer difference-makers

A surprising day

Someone posted on one of the NET cancer support groups yesterday that they had been doing some research and were amazed at how much of what exists is connected to the doctors at the Dana-Farber Cancer Institute in Boston.

…I’ll log hundreds of miles in training.

I work with some people at DFCI pretty closely. I do a lot of fundraising work for them and have put together a couple of pamphlets with their help. But even I was not entirely aware of how much influence DFCI has on cancer research in general, above and beyond NET cancer.

The DFCI difference

I spent most of today at the annual Jimmy Fund Extra Mile Brunch. It reminded me of how important what we are doing with the Marathon Walk and with DFCI’s Program in Neuroendocrine and Carcinoid Tumors is. I was with Ed Benz, DFCI’s president, for an hour before the brunch–one of the perks of being a 5-star Pacesetter. I managed to combine something he said with something else that was said for a mind-blowing factoid.

I work with some people at DFCI pretty closely.

Only 14 new cancer drugs were approved by the FDA last year. DFCI had a major hand in five of them. Think about that. That’s more than one-third of all the new cancer drugs made available last year that DFCI played an important role in bringing to patients everywhere.

NET cancer research and DFCI

Think about this: The FDA just approved Afinitor (Everolimus) for use in lung and gastrointestinal NETs. DFCI played a major role in its development. will likely be approved within the next six months or so–the only completely new NET cancer drug likely to get approval this year; DFCI was the key player in that process. In fact, there is only one new treatment for NET that is likely to get approval this year DFCI was not a key player in–and patients could get access to that trial through DFCI because it was a satellite center for the PRRT trial.

…more than one-third of all the new cancer drugs…

Afinitor, as well as Sunitinib, were already approved in 2011 for pancreatic NET–again with DFCI in a key role.

The human quality

Much of the new basic science on NET cancer is also coming out of DFCI.

Think about this…

But I don’t do the Marathon Walk–or any of the other fundraising activities I undertake on their behalf–based solely on the research they produce. I do it because of the humanity of the people doing that research and the human qualities of the doctors, nurses and support staff engaged in treating NET cancer patients. They are among the kindest and most compassionate people I have met in my life. None of them is trying to win awards for their research. The only reward any of them seem truly interested in is the one that comes from what they do for and with patients.

The gold standard

My gold standard for doctors grows out of Jen Chan, who was Jane’s oncologist. Never mind her patience in helping us understand Jane’s cancer; never mind her call to us shortly after we got home after Jane’s first appointment to talk about options she had come up with since that morning; never mind her willingness to give up a free Saturday afternoon to come to the hospital to talk to me about our options when Jane went into her second coma; how many doctors would put the turkey in the oven on Thanksgiving morning and then leave it and her children in the charge of her husband to come see Jane that morning, not as her doctor, but as her friend?

None of them is trying to win awards…

I have rarely seen that in most of the doctors I’ve dealt with over my life–and especially not very often among the very best at what they do. The people at DFCI do both. And I love them for it.

My DFCI mystery

Outside of New England, no one seems to have heard of the NET cancer doctors at DFCI or the Program they have created. When I read the recommendations of patients from outside the region, I rarely see Dana-Farber, let alone  Matt Kulke or Jen Chan, mentioned. And that’s sad. What goes on there is extraordinary.

And I love them for it.

And why shouldn’t it be? Nationally, the Dana-Farber Cancer Institute ranks third overall for cancer treatment–trailing only Sloan-Kettering and MD Anderson. You don’t get that kind of recognition without excellence in every aspect of what you do.

Walking the Walk

In 225 days, I’ll walk 26.2 miles to support the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Between now and then I’ll log hundreds of miles in training. I’ll spend hundreds of hours working both alone and with the other members of our team to raise money for the Walk; I’ll spend similar hours trying to help others get their own fundraising projects off the ground; and I’ll drive hundreds of miles to support their efforts. I’ve done it before–and I see no reason not to do it again this year–and next year, and the year after that, and the year after that…

What goes on there is extraordinary.

There are lives at stake–and what the doctors at DFCI do makes a difference. Come and help us make a difference.
Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.
Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.
 
 

2 thoughts on “DFCI’s NET cancer difference-makers

  1. I found this rather by accident and find it quite interesting. I constantly look for information and help understanding this cancer and how to deal and live with it. Thank you for sharing this information. I’ll keep reading what you have to share.

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