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GIST Support International - Katie's Story
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Katie's Story

On October 24, 2005 I went to my primary care physician's office to get my ear checked out because I thought that I had an inner ear infection. Upon arrival I passed out, as Marc, my husband, was walking me in. The doctor's office immediately called an ambulance and they took me to the local hospital. They said that I was losing a lot of blood due to internal bleeding. A couple more days and it could have been fatal. They gave me two blood transfusions and put me in the ICU. They did an endoscope and said it was a bleeding ulcer. I was in the hospital for about a week and then returned to work two weeks later only to have the same dizzy feeling return. I went to the ER, had another endoscope done and was again released a week later for a bleeding ulcer. Two weeks went by again and the feeling returned. I took myself to the ER. I was determined to not leave there until they figured this out. This time I had a different doctor and he did another endoscope and a CT scan. They said that there was a mass of some kind feeding the bleeding ulcer. It was determined that I go into surgery to have it removed. Believe it or not I wasn't really that scared about the procedure then, but looking back and knowing what I know now, it was a very serious and complicated surgery.
On November 25th they removed 1/2 - 2/3 of my stomach. At first they came into my room and said they had great news that they didn't find any cancer. Two days later as I was still recovering, they said they were wrong and it was indeed cancer. They said they found an extremely rare tumor called GIST or gastrointestinal stromal tumor.  I was told that they got it all and I had nothing to worry about. Boy, were they wrong.
A month later I had another CT scan done. When I called to get the results a week later I was told by the nurse "great news everything looks the same." I said that it shouldn't look the same considering I had a huge mass before the surgery and I had half my stomach taken out. The doctor called back immediately and said the mass was still there. After doing all the research I did I asked the doctor to be put on Gleevec.
Four weeks later I ended up in the hospital again because my esophagus closed up. They didn't give me very long to live because they said all of my organs were going to begin to shut down. This shocked me because I didn't feel like I was dying. I knew then that I had to get out of there and find some other doctor to keep me alive. I did a lot of research. I knew that I had to find a doctor that knew a lot about GIST. I found Dr. Morgan at Dana Farber Cancer Institute. The day after I got them to release me at the hospital I was on a flight to Boston, MA. I truly believe that Dr. Morgan has saved my life. He took me off Gleevec because he said that I wasn't tolerating it well and he put me on Sutent at 37.5mg. I have been on Sutent since February 2006, on a continuous dosage. The side effects have been tolerable although I have definitely had some bad times.
I have had some side effects such as major swelling (edema) of my legs, abdomen and feet, high blood pressure, fatigue, thyroid problems, cramping and sore spots on the feet and hands, thinning hair and headaches. Even though all of these things seem to be unbearable, I am just so glad to be here. I look at this as just an obstacle, not a death sentance.
From the edema, I had got pneumonia in November 2006. I was taken off the Sutent for about a month then Dr. Morgan decided to lower my dosage to alternating 37.5mg and 25mg. Since I have started the new lower dosage, in December 2006, my side effects have pretty much gone away. I am so lucky to have so many knowledgeable doctors behind me to give me support.
I don't know when I will go into surgery again. They want me to wait until the tumors (there are five) start to grow. They are around some major arteries so they want them to be as small as possible. When I do have surgery I will have it in Boston at Dana Farber. I have already met with the surgeon and she has done hundreds of this type of surgery.
I do alot of research and do my best to keep in shape. I am determind to fight it. WHEN LIFE THROWS YOU A CURVE, LEARN TO SWERVE!
JANUARY 17, 2007 
Today I had an appointment with Dr. White, my oncologist, here in St. Louis. He said that my lab results were really good. My hemoglobin count is almost up to 13. That is awesome! Since I am doing so well I am not scheduled to see him again until February 14, Valentines Day. Valentines Day doesn't have really great memories for me since that was when I was in the hospital last. So to all the doctors who said I wasn't going to live . . . it has almost been a year! 

JANUARY 28, 2007 
I will be going to Dana Farber on Thursday and Friday to have routine blood work and a CT scan. It will be interesting to see how the effects of the lower dosage of Sutent is doing.  

FEBRUARY 02, 2007
Well I just got back from Dana Farber Cancer Institute today. I went with a friend of mine, Candace Chelist, who I used to work with at Saturn of West County. Anyway, I got a very positive report from Dr. Morgan. All of the tumors have remained stable on the lower dosage of Sutent.
All of my side effects are pretty much gone which is huge. Hardly any fatigue, no more sore spots, no more sore tongue, no more edema, no more taste changes in food, no more high blood pressure and my hair is finally coming back in. It is way darker than it used to be but I'll take anything.
I also talked with Dr. Morgan about the possibility of having Carney's Triad, which can occur in younger women with GIST. It is where you have 3 separate types of tumors, one being GIST, the others being pulmonary chondromas (lung tumors), and paragangliomas, which can be found in certain areas of the head, neck or torso. This is an extremely rare syndrome with fewer than 30 cases reported with all three tumors present. Right now we know that I definitely have GIST, but I also have had two spots on my lungs that they aren't sure of what they are yet. My doctors are just keeping a close eye on them. The only way to truly find out if I have Carney's Triad is through surgery.
I did also talk to Dr. Morgan about surgery again. They really don't want to do anything unless they have to. Right now my tumors are all around some major arteries and blood vessels and it would be a very complicated surgery and they might not be able to remove all of them. The good news is that Sutent, might be able to shrink them down little by little. He said that there is even a slight chance that they could go away with just the Sutent alone.
I would say that this was a pretty positive Boston experience. I am hoping that the lower dosage continues to have promising effects for me without the side effects. I go back at the beginning of next month.
FEBRUARY 16, 2007 
On Tuesday, I found out that my mutation analysis came back finally. I was told that it came back as "no mutation" otherwise known as "wild type". This really doesn't change the way they are going to be treating it. It is just really one of those things in the GIST community that is, just neat to know. Anyway this could mean more that I could have Carney's Triad. Which isn't necessarily a bad thing.
On Wednesday, I saw Dr. White, my oncologist here in St. Louis. He checked all of my levels in my blood and everything is looking great!
MARCH 04, 2007 
Well, Marc and I got back from Boston late Friday night. The flight was delayed quite a bit due to weather. Anyway, one of the tumors shrunk a little bit which is great. We are always happy and thankful when we see some activity, as far as shrinkage goes.
My side effects are starting to come back a little but they are definitely tolerable. My hands and feet can get sore, the fatigue is coming back and my blood pressure is just a little bit on the high side. When it comes to side effects, I try to not let them bother me that much because I am just so thankful to even be here that they are just in the back of my mind.
Marc and I did get to eat at an absolutely great sushi place. We usually eat sushi when we are there, but this place wasn't that expensive and we got more food. I can't wait to eat there again.
I am not scheduled to go back to Boston until mid April, but we are trying to switch to a schedule on going every three months instead of every other month. We will see if we can get it approved or not.
The next time I go to Dana Farber, they are going to do a DNA swab test to see if I carry the gene for familial GIST. If I do then I will get Connor tested as well. I didn't know that they could do this, so it's great that they can. I just can't believe science and technology these days.
Well I am happy that things are going so well for me and my family and I wanted to thank all of you for your kind words and support. I wish all of you the best!

St. Louis, Missouri


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