Laura Capitano: Story: Beating cancer, the proton way

2008-07-22T03:56:00.002-04:00

I was so glad to see this story by Laura Capitano in the Florida Times-Union on Sunday!

You'll see I mentioned the University of Florida Proton Therapy Institute in an earlier post. As I did the research for newer treatments of pancreatic cancer, especially proton therapy, I was astounded to learn so much about the gem we have right here in Jacksonville.

I think Laura wrote a great piece about the Proton Therapy Institute, especially by including the positive comments and enthusiasm of patients who have received treatment there and pointing out that a cancer patient absolutely must take charge of their own case. For whatever reasons, and I don't even care to speculate here, the average doctors don't seem to offer all the treatment options available.

Kudos, Laura - you did a great job!

Man Missing After Meeting Person About Car - Jacksonville News Story - WJXT Jacksonville

2008-07-11T13:58:00.002-04:00

This is a friend who is loved by his family, his friends and his community. I am just trying to get the word out.

Man Missing After Meeting Person About Car - Jacksonville News Story - WJXT Jacksonville

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To Gary and Rita with Love!

2008-07-07T11:46:00.007-04:00

My friend Patty's brother, Gary, recently received some news. I love Patty and Gary dearly - both are friends and clients. It's the kind of news we all want to live without. Gary has pancreatic cancer.

That news has caused me to spend the last couple of weeks doing what I do best: praying and researching.

If you know me well - heck, if you know me at all! - you know I always have questions and I always want more information. I'm not trying to be nosy - I'm just interested and curious, and I like to help if I can. I've been this way as long as I can remember. I didn't understand it myself until I read The Tipping Point by Malcolm Gladwell several years back. But that's a story for another day!

When Patty told me about Gary's possible pancreatic cancer, we both had a lot of unanswered questions. Another gift I have is the desire and ability to do research and come up with meaningful information. So when Gary's diagnosis was confirmed, I got busy.

Knowing that the five year survival rate of pancreatic cancer patients is among the worst of all cancers, I immediately wanted to find information that would provide some hope to Gary, his family and friends, and anyone else who's loved one has pancreatic cancer. I wanted to uncover any potentially successful treatments that weren't widely known.

The first clue came in a conversation with my daughter, Elaine. Last weekend Elaine shared with me a conversation she'd had with someone while walking her dog that morning. Elaine is a friendly person and struck up a conversation with a young man close by. After exchanging pleasantries, he shared with Elaine that he lived out of town and was in Jacksonville receiving proton therapy for pancreatic cancer at Mayo Clinic. I had just learned about Gary's cancer a few days earlier and I shared with Elaine how grateful I was that she happened to share that conversation with me.

So I went looking around the web! I didn't find anything about proton therapy for pancreatic cancer (or any other cancer) at Mayo Clinic in Jacksonville.

The first thing I did was tweet a question on twitter. (If you don't know about twitter and you'd like to, you can click and follow me @jeannebreault.)

I heard from one twitterbud that her mom had pancreatic cancer many, many years ago, so not too much info there. She did share with me about Randy Pausch, who is someone I had vague knowledge about but didn't know too much. A permanent link to Randy Pausch's blog is in my bloglist on this page.

I also found this response to a post on Social Capital Blog:

Suzanne Cummins // May 30, 2008 at 4:19 pm

Hello. Although I sent a message to Mr. Pausch through Carnegie Mellon, I thought it might be worth trying to reach him through this blog as well.

T-Gen (the genome project group connected with University of Arizona’s Phoenix medical school campus) has a new protocol in treating advanced metastatic pancreatic cancer that has rendered remarkable results (even with tumor markers in the thousands). Early trials showed a 78% response rate. Even at Randy Pausch’s late stage, and even though the regimen is tough, results have been more than just notable.

The protocol was publicly introduced at an oncology meeting in San Diego a couple of months ago (I am not a doctor, but I believe the protocol involves an existing chemo product with a unique delivery agent - but I may well have that wrong.) Anway, my contact at T-Gen is Dr. Mike Demeure (Mike is a pancreatic surgeon, but he works with the medical oncological team). I sent Dr. Demeure’s cell number to Randy via Carnegie Melon, but I do not know if he got it.

I will only be sporadically checking emails while travelling over the next month but will be back to work by the end of June. If Mr. Pausch’s oncologist would like to speak with the folks at T-Gen, I am certain this would be easy to arrange.

I just did not want to leave this stone un-turned in case this website is monitored by someone in touch with Mr. Pausch. Despite their efforts, even top oncologists do not track every new protocol, and this one - though startling - is quite embryonic.

Another twitterbud, George Tallabas @IdahoRealEstate, shared this:

@jeannebreault Many don't believe in this but I have a farmer friend that said no to radiatin 7 years ago and had stage 3 cancer...
@jeannebreault He went to Mexico and was treated with herbs. 6 months later he was free from cancer and still is today. He is a milionaire
@jeannebreault And can afford the best doctors and the best treatment but the herbs in Mexico are what cured him.

I did learn about the University of Florida/Shands Hospital Proton Therapy Institute in Jacksonville that has exceeded expectations since opening two years ago. The website doesn't specific pancreatic cancer as one of the cancers it treats, but it's certainly worth a look.

Some other leading-thought treatment information includes the National Cancer Institutes's Cancer Research Portfolio, the Lustgarten Foundation for Pancreatic Cancer Research, OncoLink at the Abramson Cancer Center at the University of PA, Latest Pancreatic Cancer News at the University of FL Cancer Center and the National Association of Proton Therapy, which has a wealth of information relating to use of proton therapy in cancer treatment, including pancreatic treatment.

That's it for now...if you'd like to add to this information, please do!

Research Using Web 2.0 and Beyond

Laura Capitano: Story: Beating cancer, the proton way

Man Missing After Meeting Person About Car - Jacksonville News Story - WJXT Jacksonville

To Gary and Rita with Love!