About GIST

UberJumper said:

Hoorah! Airborne!

I'm an ex-para as well (well, a non-current Para). I was diagnosed with a GIST tumour ("most like a Gastro-Intestinal Stromal Tumour") in March of 2004. I wonder what the odds are for two paratroopers to get the same type of extremely rare cancer!

More on my story here:

http://uberjumper.hwcommunity.com/cancer.shtml

As for William's questions.

1 - Have you been successfully treated with GLEEVEC?

No, as far as I know, your tumour has to be C-kit Positive for Gleevac to work. Mine isn't.

2 - Isn't this type of tumor always malignant?

From what I've read, not always. I believe mine was "of un-determined malignancy" however. My mitosis rates were extremely low apparently.

3 - What is your prognosis?

50/50!

4 - How long have you had this tumor?

They couldn't say, but given its size (7cm) it must have been around for a while.

5 - How has it affected your day-to-day activities?

It didn't really effect me while I had it, as I didn't really notice it until the week I started to bleed internally.

6 - Is one medical facility better than another for treating this type of cancer?

As surgery seems the primary method of correcting this type of cancer, probably the best GI surgery center would be best.

7- Do you know anyone who is considered to be the "expert" in this field of medicine?

Not that I'm aware, although I imagine anyone who's written a book about it would be as expert as they come.

GIST Specialist
My husband was diagnosed with a GIST tumor three years ago. Because we lived near New York at the time, we were referred to Sloan-Kettering. The surgeon he had was excellent -- one of few doctors who has had extensive research and surgical experience with GIST. He is considered one of the few experts on this rare type of cancer. His name is Dr. Daniel Coit. There were no complications with the surgery, the tumor had not opened and seeded, so the doctor was able to remove it cleanly, and my husband has been given a clean bill of health. I hope this helps.

EstherMSKCC said:

GIST Specialist
Dear Hope4321,

As an employee of Memorial Sloan-Kettering Cancer Center, I wanted to let you know how pleased I am that your husband is doing well and had such a good experience here. It's always nice to hear positive feedback from patients and their families about the care they received from our staff, especially when it's a rare or difficult to treat cancer. I wish your husband continued good health and good wishes.

Best, --Esther

Need an Oncologist
Esther,

Can't tell you how happy I was to come across your post. My son just had surgery to remove a tumor from his small intestine and was diagnosed with GIST. I have been trying to do as much research as possible in order to get the very best treatment. I live in New York and would like to find an Oncologist at Sloan with the most experience in this rare and difficult form of cancer. While doing my research I came upon the names of both Dr DeMateo and Dr. Maki. I would like to make an appointment with either of them or any other Doctor that you might recommend as soon as possible. Any information you can give me will be most gratefully appreciated.

Hope4321 said:

GIST Specialist
My husband was diagnosed with a GIST tumor three years ago. Because we lived near New York at the time, we were referred to Sloan-Kettering. The surgeon he had was excellent -- one of few doctors who has had extensive research and surgical experience with GIST. He is considered one of the few experts on this rare type of cancer. His name is Dr. Daniel Coit. There were no complications with the surgery, the tumor had not opened and seeded, so the doctor was able to remove it cleanly, and my husband has been given a clean bill of health. I hope this helps.

tobare said:

Gist Specialist
Dear Hope,

Glad to hear you husband is doing well. Are you willing to share some information regarding your husband, tumor size, location, mitotic rate? Did you see an Oncologist at Sloan after the surgery? I too live in New York and my son recently had laparoscopic surgery to remove what they called a benign tumor from his small intestine. His tumor was 3.5cm with a mitotic rate of 1/50, the pathology report indicated GIST and it was recommended that he see an Oncologist. I would like to go to Sloan and any information you might share will be appreciated.

Dear Hope,
Wondering how
Dear Hope,
Wondering how you are doing at Sloan. My husband (age 49 then) was diagnosed in April of 2009. His GIST was quite large (7 cm) with a high risk mitotic rate. He was operated on in May of 2009 in Sacramento, CA, but we have since been seen every three months at MD Anderson Cancer Center in Houston. They have GIST specialists and are supposed to be one of the best in the nation, but I have always wanted to get a second opinion and talk with another specialist. I know Sloan and Dana Faber are supposed to specialize in GIST. My husband has been on Gleevec since July of 2009. He started with 400 mg. then about a year later, a test showed he wasn't absorbing at the rate he should be, so they increased the dose to 600, and on his last visit (Nov. 2010) the CT scan showed that a spot in his peritonium that they had been watching has grown, so they increased the Gleevec to 800. He will return in January for another scan. I think he is becoming resistant to Gleevec, which does happen over time. The doctor at MD Anderson, Dr. Trent, says there are other drugs to try. I am anxious to hear from others with a similar pattern.
Lynn

MatthewS951 said:

Hello Paratrooper,

My name is Matthew and I'm a GIST survivor. While surgery is the first option for a GIST, there is a drug called Gleevic which has proven to be effective for GIST. You may want to check in on that. If you care to talk more about your GIST with another GIST patient, reply back to this and I'll send you my regular E:Mail address where we can talk.

Take Care,
Matthew S

hi

I wanted to know if I can use gleevec insrad of ssuegery, I have a 2ibcnch gist o my stomach please reply what can I do