About GIST
Comments
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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? MatthewS0
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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.MatthewS951 said: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
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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.paratrooper said: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.
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Hello Paratrooper,paratrooper said: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.
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 S0 -
This comment has been removed by the ModeratorMatthewS951 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 S0 -
Hello William,unknown said:This comment has been removed by the Moderator
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 S0 -
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.MatthewS951 said: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
I would appreciate your response.
Thanks, Stephanie0 -
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.unknown said:This comment has been removed by the Moderator
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Would like to talk about your experience with Gleevec as i am contemplating decisions about recurring GIST. Thanks.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
dloop@earwaves.net0 -
Hi, Matthew.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
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.0 -
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.comparatrooper said: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.
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Hoorah! Airborne!paratrooper said: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.
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.0 -
HIMatthewS951 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
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?0 -
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. Laurakmk said: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?0 -
Hi:kmk said: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?
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.
Laura0 -
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.kmk said: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?
Laura0 -
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.Leanne74 said: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.
Take Care,
Matthew S.0 -
GIST Survivor (so far)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.
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!!! Terry0
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