Dear Friend of Rotary,

We are glad you have been given our contact information. There are more than nearly 20,000 clinical treatment options for different cancers, including many new immunotherapy treatments and new "pathway blocker" therapies.

What Linda Mattson Cancer Foundation try to provide is sound information for victims of cancer and rheir loved ones so they can play a more pro-active role in their own decision-making process. With so many treatment options, asking the right questions of one's doctors may be the difference between life and death.

Simply put...An informed patient is five times more likely to survive the battle than a patient with little or no knowledge of his or her disease.

Listed below are the basic questions we ask so we can provide you only the most focused and pertinent information regarding your cancer. To best help you, I initially need to know... as much as you can tell me about your condition. If you need continuing assistance, we will gladly provide it as expeditiously as possible.

Yours hopefully,
ED

Link to questionnaire: http://www.ketron.org/cancerquestionnaire/

1. What is the primary diagnosis? In other words, what kind of cancer do you have?

2. When were you diagnosed?

3. Are multiple locations of malignancy indicated? If so, Where?

4. What if any treatments have you had?

5. What treatments have been discussed with you (if any)?

6. Who is your oncologist?

7. Do you know your Karnofsky, Lansky or Zubrod score?

8. Has your cancer metastasized? And if so, Where?

9. What is your overall health beside the cancer?

10. Have you changed your diet since being diagnosed? How?

11. Do you have any blood pathology reports you can send me?

12. What are the known "markers" of your cancer?

13. What is your age? ( Women: Are you post-menepausal? )

14. What is your height and weight?

15. Does your family have privately stored "cord blood" available for transplantation? YES NO ???

16. Do you have any daughters who are pregnant (for cord blood storage purposes if needed)? YES NO

17. Do you have a twin (for possible marrow transplantation? YES NO

18. What states are convenient for you to travel to for specific treatments? (the Fellowship of Flying Rotarians and AirTran Airlines can provide transportation - just contact us to assist you in this regard )

Below is the rest of Ed's very personal message to all who read this page, who themselves HAVE been diagnosed with cancer, or who have a friend or loved one so afflicted. THIS MESSAGE IS FOR YOU!

"When my wife Linda died nine years ago I simply did not know how I could carry on. In my grief I sold our business, our home and all our "things" -- everything I had that no longer had any meaning for me. I just got in my car and took off with my cell phone switched off and my laptop beside me. My ostensible reason was that I had children in New York, Chicago and Oklahoma, but I knew I was just a lost soul seeking I-did-not-know-what.

"Every time I turned on the laptop there was my beautiful wife staring back at me from my home page, so I got used to leaving the computer on. It finally occurred to me that Linda was talking to me from that computer screen, saying,
"Come on, come on, we worked too darn hard for the last 14 years to just let it all drown in tears and fade away."

"Then I slowly came to the realization (after all, I'm just a simple guy and a slow learner, to boot) that inside that computer with Linda's smiling face peering out at me was all the information that we had collected for the past 14 years in our efforts to prolong her life.

"And all of that information was easily accessible.... it was available ... it could be transferred to other people who were still alive but who were fighting the same fight we had just fought!!!

"But how to get that valuable information to them? To all those people in need of resources to fight their cancers? I had no answer to that, so I just started to talk to people I would meet on the road.

"Then one day I met Bernie McCoy and after sharing my story, he asked if I would speak to his Rotary club about my experience.

"Their response was electrifying! Several members wanted to know more, as they clearly felt the frustration of not knowing how to deal with or utilize the bast amount of knowledge about cancer Strange to say, it hadn't occurred to me just how important it was to be feel able to ask intelligent and pertinent questions of oncologists!

"In Rotary I found the vehicle by which I could effectively spread my message; knowledge of cancer treatments and their relative efficacy is empowering! And in Rotary I found an almost ubiquitous desire amongst Rotarians to help other people -- even if they weren't friends or relatives!

"A year or so later, visiting Rotary and other service clubs, I encountered a Rotary club where a member asked my why I was not in Rotary.
I blurted out, "Well, I hadn't thought about it, but actually, I guess it's because no one's ever asked me.!"
With that, he did ask, and so I became a member of the Rotary Club of Mishawaka, Indiana in District 6540 (In case you aren't aware, Mishawaka is an old Indian word for "right near Notre Dame").

"Over the past eight years, I have been invited to speak to over 3,000 Rotary clubs in 41 states. I've now been a guest speaker as well at numerous district conferences, club president trainings (PETS), and even at special Rotary health fairs and similar events.

"From the very beginning of my speaking, it became apparent that Rotarians and others hearing me wanted even more information, so I resumed researching and keeping up on the rapidly accumulating flow of information emanating from the myriad of cancer research and treatment centers. As my data base grew, so did my sophistication of computer access and storage space.

"Thank goodness!

"Presently I am receiving from seven to ten requests a week for specific information relating to actual patients, and at any given time I am in ongoing communication with 175-200 patients and doctors or friends or relatives.

"To make our task easier, the above questionnaire on this web site quickly provides information which saves us time, giving us more time to construct meaningful and focused answers to those sending in requests for help.

"Please do not despair; the research and results leading to effective treatments for most cancers has just exploded and grown exponentially the past decade, and I truly believe that if today's knowledge and treatment options had been available a decade ago I might still have Linda by my side.

"But Linda is still in my life, every day. She was -- and is -- the inspiration for my reaching out to others to help them in the same way I tried for fourteen difficult years to help Linda. I earn no money from my efforts for myself, as I believe that I have been blessed with this life mission.

"And I am sustained by my conviction that with every day my efforts give continuing meaning to Linda's life as well as her struggle with five different cancers over those years. Her subsequent demise and my loss of her affectionate role of wife, mother and grandmother is the cost I bear to bring witness to untold thousands of others in need.

"I am humbled by all the so many wonderful people -- Rotarians, doctors, patients, family members, and friends that I have met in my travels. They have enriched my life with their interest, their concerns, and their humanitarian spirit. The book I have written, "Say NO to the Undertaker...Winning Your Battle with Cancer" now is funding our new Call Center set up in Indiana to support my outreach efforts on the road as well as supporting the building of an interactive website for publicizing research and making research results easily available to everyone who can access the internet; yhose who purchase my Teddy Bears basically support my communication costs at Kinko's and on Verizon cell.

"I remarried this past year to a wonderful woman from the tiny country of Moldova who has had her own difficult time as a nurse treating victims of Chernobyl. Irina and I were married at a beautiful and happy ceremony conducted by Rotarian and Past President Rev. Jim Kirk at his Rotary Club of Glen Burnie, Maryland, USA, with Past District 7620 Governor Rob Ketron giving away the bride. Then District Governor Pat Kasuda was among the honored guests as was PDG Ray Streib, both being members of the Glen Burnie club.

"Irina has joined me in this quest to inform all who come into contact with concerned Rotarians just what information we have to impart; she has become a most able technical and administrative assistant and has brought joy to my life as well as structure to my efforts.

"As I write this, I know of so many who have all but given up hope, or who are scared beyond mere words by the diagnosis given them, or who just don't know how to find the information that could save their life -- or the life of someone they love.

"I've been there. So please have hope. The oncology researchers and practitioners I have met are dedicated and are working to save more lives than ever before.

"We wish you well, and look forward to being of some small assistance to you in your quest for answers.

"Yours in Rotary service,"