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About GIST

shkay
Posts: 2
Joined: Apr 2002

I would like to hear from anyone who has the same cancer as I do. It is a form of Leiomyosarcoma. I am a survior, was diagnosed, July 27, 2000. Sure was a shock to me, needless to say. Thank you, Sharon

MatthewS951
Posts: 8
Joined: Apr 2003

Hello Sharon, Last November I was hospitalized to determine what was causing some internal bleeding. At that time they discovered I had a GIST. They operated and removed it the following evening. Four days later pathology found cancer cells in the tumor and they had to operate a second time to cut an exclusion area around where it had been. I recently learned from Many different tests that I'm cancer free now. I've learned there is not a lot of information on the Internet concerning GIST. Have you found any information you'd care to share? MatthewS

paratrooper
Posts: 1
Joined: Mar 2004

I to had some bleeding and was being treated for bleeding ulcers for about a 6 month period after being scoped in July and November 2003. In December it was discovered that I had a GIST and surgery followed about a week later. Lost part of my pancreas, my spleen and half my stomach. It is my understanding there is no proven treatment for GIST other than surgery. Also, I have been told that there is a reoccurance in about 45% of the cases. Since it is a rare type of cancer I am not sure that there is any real reliable information available. I would be grateful for any information that you might have on the subject.

Merton48
Posts: 1
Joined: Mar 2004

I just had my GIST reoccure 9 months after my first surgery. In December the CT scan was clear, and mid March the tumors hemoraged. This time they removed more of the small intestine and some colon. I am going to start my gleevec soon to prevent another reoccurance.

MatthewS951
Posts: 8
Joined: Apr 2003

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

MatthewS951
Posts: 8
Joined: Apr 2003

Hello William,

In November, 2002, I was diagnosed as having a GIST. I was operated on Nov. 21st, 2002 and four days later pathology came back saying the tumor had some cancer cells and they went back and operated on me a second time on Nov. 26th, 2002. Two stomach surgeries in five days was not something I was excited about, but I knew I didn't have much choice. I spent 14 days in the hospital and eight weeks out of work.

I was told that radiation or chemotherapy had little effect on a GIST. I have quarterly tests, CT / Pet Scans and/or Endoscopy. I have a feeling that my GIST will eventually return and have to be surgically removed again. But, until then, I'm not gonna stop living.

To answer your questions:

1. As my tumor was surgically removed and has not yet returned, I've not been treated with GLEEVEC, though my Oncologist has discussed it with me.

2. I don't know that the tumor is always malignant. I think my surgeon may have thought they got it all the first time. The second surgery showed no cancer cells in the margins.

3. My prognosis after 1.5 years has been good.

4. Neither I nor my doctors could say how long I'd had the tumor.

5. It took me over a year before I finally got to feeling like my old self. But, one thing I learned the hard way was that I have to have B-12 injections at least monthly, though I have a nurse who gives them to me weekly. I found that worked best with me.

6. I can't say about Medical facilities, but I go to Mary Bird Perkins Cancer Center here in Baton Rouge. I find them to be very qualified and capable of providing the best possible medical care.

7. I work with the American Cancer Society here in Baton Rouge for many years before I was diagnosed with my GIST. I found it's such a rare cancer, there's not much information. I can't say who would be an "expert" in this field.

I have to say that I never really experienced any painful situations before my surgeries. I woke up one morning and couldn't stand up without feeling like I was gonna pass out. I went to my doctor's office at noon and after a few minutes my doctor asked "What hospital would you like to go to?" I had massive internal bleeding and my blood pressure had dropped drastically. The cause of the blood loss was from my GIST.

I hope this has been of some help to you. I unfortunately don't check this site that often and the past two weeks has been very busy for me.

I am doing much better today, but having a portion of my stomach removed means I eat less than previously. Here in Louisiana that can be bad (LOL) cause of all the great food we have here.

Please reply for more questions or just to talk with someone with a GIST.

BTW, I do photography work on the side, and last year I took a photo at the start of the Survivors lap at Relay for Life and the local ACS has used my photo for this year's announcement for Relay for Life, Kewl!

Take Care,
Matthew S

Stephanie75
Posts: 1
Joined: Jul 2004

Matthew, I was just operated on for a baseball size GIST last month (June 6 I was admitted into Summit Hospital when my bloodwork showed I needed an immediate transfusion- I only had three pints of blood in my body). I am also in Baton Rouge. I was wondering if you had a lot of back pain as well as abdominal pain after your surgeries. I had two as well. One on June 8th to remove the GIST and on June 11th, when half of my stomach was removed.
I would appreciate your response.
Thanks, Stephanie

Leanne74
Posts: 1
Joined: Jul 2004

Hi, I've just signed up to this website on behalf of my mum who was diagnosed with GIST last November. My Mum is 55 years old and had surgery to remove the GIST, however part of it was left behind due to the location. My Mum was then given GLEEVEC and was told she would need to take it for 3 months and then have a CT scan to ensure they were working - they weren't, the GIST continued to grow. My Mum has come off the Gleevec now and was offered another Trial however she found the side effects of Gleevec a little hard to handle and did not wish to continue down that path. My mum has now turned to alternative medicine, being a Vitamin called Transfactor Plus, which she is hoping works. My Mums oncologist gave her a prognosis of only months, due to the quick growth rate of her tumor. However now that my mum is off the Gleevec she feels a lot better, and is not suffering any pain at this stage.

MatthewS951
Posts: 8
Joined: Apr 2003

Hello Leanne, I hope that your mom is doing well, though it's difficult to say when you have a rare cancer like a GIST. Hopefully her new treatments will help her, as it sounds like the Gleevic was rough on her system. Wish her well for me, I'm about a year younger than your mom.

Take Care,
Matthew S.

auzie100's picture
auzie100
Posts: 4
Joined: Jan 2005

HI I was diagnosed with GIST NOv 2003 and have beern taking Gleevec for a year. So please email me at auzie100@aol.com

dloop
Posts: 1
Joined: Oct 2004

Would like to talk about your experience with Gleevec as i am contemplating decisions about recurring GIST. Thanks.
dloop@earwaves.net

auzie100's picture
auzie100
Posts: 4
Joined: Jan 2005

hi I have GIST and have been on Gleevec a year. Can we talk? auzie100@aol.com

kritterz5
Posts: 1
Joined: Nov 2004

Hi, Matthew.
My name is Melissa and my husband, Frank, was diagnosed last year (Aug. 2003) with this tumor in the small intestine. He had two surgeries (back to back, within days of each other) in hopes of taking the tumor out, but the tumor is 9 cm in size and unresectable. He has been on the Gleevec for over a year now and has had to have a third surgery this summer in San Diego to create a bypass from his stomach to a portion of intestine due to the tumor is pushing against the stomach and right kidney. The tumor is bad-wrapped around his aorta, vena cava, the head of pancreas is completely covered by it. So far his liver is ok, thank God. By having this last surgery, it has enabled him to eat and not have persistant nausea & vomiting.

Our lives have changed forever since that day in August, 2003. What was a rectal bleed turned into this gigantic GIST monster that I had never heard of, and I'm an oncology nurse! My husband had to be transfused with 14 units of blood as his hemoglobin was down to 3.9! The Gleevec hasn't shrunk anything, but I don't think it's growing faster yet. I hope not. It's so hard seeing him go through this, having to work and take the Gleevec and all the side effects. I don't know anything about this...how much time left when it's unresectable and Gleevec fails? To think of such things breaks my heart. My husband is 47, I am 34 and we've only been married for eight blessed years. I don't want to lose him to this damn thing but I'm powerless to stop it. It helps by writing this and talking with others who know.

Thank you for listening.

kmk
Posts: 1
Joined: Feb 2005

HI
I am new to this cancer since last thursday 2-2-05. I am told that I am not surgery material, but am to start a new drug called gleevec on tue. How long have you had GIST?

alixgeorge
Posts: 3
Joined: Mar 2005

Hi: I had surgery for a GIST in December and am now on Gleevec as part of a national study (my GIST is gone for now but their trying to see whether the Gleevec can prevent it. Please let me know how you react to the drug. Right now my biggest problem is swelling in the eyes, face and legs. Laura

alixgeorge
Posts: 3
Joined: Mar 2005

Hi:

I had ny GIST removed in December, am on Gleevec and have been researching this terrible disease. I'd love to share information with anyone else who is trying to know more about GISTs and/or Gleevec.

Laura

alixgeorge
Posts: 3
Joined: Mar 2005

Hi: I, too, am on Gleevec. Would be interested in hearing what you know about the drug and any side effects you have. I began Gleevec about six weeks ago.

Laura

auzie100's picture
auzie100
Posts: 4
Joined: Jan 2005

Please ask about Gleevec. I was diagnosed with GIST again in NOv 2003 and have been on Gleevec a year. I had half my stomach out in 1989 for it.auzie100@aol.com

UberJumper's picture
UberJumper
Posts: 3
Joined: Jan 2005

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.

tjsiebs
Posts: 2
Joined: May 2004

Diagnosed with GIST, in April 2003. Bleeding internally & hospitalized, biopsy in May03 and resection in June 03. I was very lucky. Tumor was attached to inside curve of my stomach, all margins clear, but tumor was resting against my liver, so they put me on Gleevec. I was on Gleevec for 1.5 years as profilactic since tumor was against my liver, but when my ocologist shrugged his shoulders at my question of "How Long?", I decided to get a 2nd opinion.
I googled "Gastrointestinal Stromal Tumor" + physicians, resulting in my referral to George Demitri, Dana Farber, Boston. His team is amazing. I saw Dr. Jeff Morgan and since have relocated to N. Carolina and have screenings thru Duke Medical/Oncology - this office participates in Dana Farber studies. Dana Farber labs tested my specimens and showed the C-Kit negative variant, which my local labs hadn't the technology to diagnose. This fact may have taken my treatment in another direction, but at this point I have catScans every 6 months, thankful for every 'All Clear' that I get.
I can't stress enough the value of second opinions!!! Terry

Hope4321
Posts: 1
Joined: Mar 2010

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
Posts: 20
Joined: Feb 2010

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

tobare
Posts: 4
Joined: Mar 2010

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.

tobare
Posts: 4
Joined: Mar 2010

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.

goodhealth3
Posts: 2
Joined: Dec 2010

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

tobare
Posts: 4
Joined: Mar 2010
tobare
Posts: 4
Joined: Mar 2010
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