My name is Harry Lyle I am a 51 year old male and was diagnosed with carcinoid cancer in July of 1998. The story started, my eyes where bothering me and I was drinking enough water to fill a camel. I was getting ready to turn 50 and I thought I might have adult on set diabetes. I went to my doctor; Dr Paul Salbert and we started doing a few test, when they did the blood work he told me that my liver enzymes where elevated and he wanted to do an ultra sound. We did that and then they said they wanted to do a CAT scan. The people who did the scan called me on a Friday and said you need to see an oncologist TODAY!

I was the president of the American Cancer Society at the time; in fact I have been told that I was the first sitting president to get cancer while in office. How’s that for irony I am doing all I can to help find a cure for cancer and wham! I called Dr. Roy Beveridge; it was funny he thought at first that I was calling to give him grief about not coming to the last board meeting. I told him it was personal and the sounds of silence where deafening. He said that he was about to go on vacation but I should be in his office at 8am on Monday morning. They say the timing is never right but this was really bad my wife had just driven to Disneyland with our nanny, Carrie Anne Lewis from England and my two children Justin age 8 and Lindsay age 6. We had decided that she and the kids would drive to Disney and that I would fly down a couple days later. I was a Senior Vice President of a Regional Brokerage firm, Ferris, Baker Watts Inc. I had to tell the woman I loved that I had cancer over the phone that was tough and scary.

Ellen immediately wanted to turn around and come to my side I told her that there was nothing she could do then and I would be down as soon as possible. Well the test started on Monday morning, they started the test I mean everything brain scans, cat scans, MRI’s and blood I swear they took a least a couple gallons. Well Thursday evening Dr. Beveridge’s assistant called and told me that he wanted to see me the following morning at the BMT clinic. I knew then, they give you good news over the phone but never the bad news. I showed up at 11am and he walked in, I looked at him and said "I know I have cancer it just the type and what do we do". He told me I had Carcinoid cancer. I asked him if it would kill me if I went to Disney with my family and he said no and I got on a plane that afternoon. My kids had a great time at Disney, it seems that dad was going to give them anything they wanted. And I did.

I had never in 14 years of being involved with the ACS ever heard of this type of cancer. I made up my mind right then and there I told him that there was nothing they could throw at me that I could not handle and that I was going to get cured and to have at it. He told me that it was a curable cancer and that I could live a long and great life. We where going to start chemotherapy immediately. I went to the office for my first visit and I sit down and they hook the IV up to me with the various drugs I would be taking one of them being Sandostatin. I was sitting there they put the Sandostatin into the IV and within 30 seconds I had passed out, was flopping around like a fish, my blood pressure had gone to 150 over 250. Well they gave me a shot of a steroid and oxygen and eventually brought me around. I showed up there again the next day to take the next treatment and joked with the staff. ‘Doctor’s 1 Lyle 0" This time they had me in a private room and guess what the same thing happened.

They found out that I was the third known case in the world allergic to Sandostatin, No one is ever allergic to this drug they said. Well I am, Dr. Beveridge then made arrangements for me to fly to New Mexico to see Dr. Larry Kvols. The had to do this scan that also had Sandostatin in it. They said they where the pros and they knew of the previous problems but that would not happen to me. It didn’t take 30 seconds as before it took about 45 and then all the old problems, no breathing, flopping around like a fish.

I got back to the Washington DC area and they scheduled me for surgery 2 weeks later. Dr. Paul Sugarbaker did the surgery; it was done at the Washington Hospital Center. I spent 18 days in the hospital. Dr. Sugarbaker told me to expect surgery to be in 15 to 18 hour range. I woke up about 7 hours later and knew something was not right but at the time I didn’t know what. They eventually came in and told us that the tumors had encased the artery going down the right side of my body, they took as much out as they could but they did not get all of it. He said that I would never have surgery again, There was no way to completely take care of everything. Then he gave us the good news "Mr. Lyle there is no way to say this except if you make it to Christmas I ll be surprised" this was in August. I told him that was not in the cards and that I had no intention of dying, I have two small children and I will see them graduate. They eventually let me out of the hospital and I went back to work. Dr. Beveridge at this point was more than frustrated with my case because he could not find out why I was having so many problems. They eventually found out that my body had created a hormone that they had never seen before and because of that my body was reacting extremely weird compared to everyone else in the world. They tried me on Alpha Interferon ( sorry for the spelling) they gave me a 1000 unit dose. The standard dose is between 10 and 20 million units. I spent 5 days in bed violently ill. We had been in contact with Dr. Tom O’doriso who was conducting some clinical trials at the Solove Cancer Center in Columbus Ohio. They where going to try and find a way for me to take Sandostatin. I checked in on a Monday morning and the schedule was that they would give me various alpha-blockers and then minor doses of the Sandostatin and see how ill I would get. They did this to me 3 times a day for the next 5 days at the end they felt that I could take extremely minor doses of Sandostatin. I had to give myself a shot at 6 am, 4:30pm and then 11:00pm. I did this for about 6 months but I was violently ill for a couple hours after each shot and there came the quality of life issue. I was never seeing my children or my wife so we decided to try something else.

One of the other side effects of the hormone was extreme pain in every joint in my body and in my abdomen. I looked like a man of 80 or 90 when I would get out of bed each night. I sometimes refer to myself as a professional throw-up artist. I can lose it brush my teeth and be on the road again in a matter of minutes. I have the usual extremely wild swings in my body temperature, flushing, and diarreaha. Eventually it forced me to retire from my profession of 30 years due to disability.

I must say that I have the most incredible wife in the world, she has taken care of me, the children, our business till retirement, and she was my partner. It was because of her that I found out about the support group. I am so happy to have found others that are going through similar things that I was.

Its almost 4 years later, the Dr.’s have thrown many things at me but I refuse to die I have too much to live for, an incredible partner and two amazing kids. I just got through with surgery to repair a hernia that I got from the first surgery.

The Carcinoid support group is incredible I have met some amazing people who have had Carcinoid cancer for a long time and who are doing great. The only thing I can say if you have heard those words that change your life "you have cancer, its carcinoid cancer" your not alone there are a lot of people who are out here and who will be an amazing support system if you let them.