While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?
I was diagnosed with a GIST tumor in 2018. I underwent robotic surgery to have the tumor removed. 1/3 of my stomach was removed during surgery due to the tumor being imbedded deep within my stomach wall.
It is 4 years later, and except for small meals 6x a day in lieu of 3 large regular meals, I have not had any aftereffects of this journey. It was concluded that if cancer cells were present, they were of a "slow" growth kind. I had follow ups every 6 months and my last visit in 2021, I was released from further follow ups.
While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?
Yes I was diagnosed in 2019 I’ve taking 3 types of medication and now I’m taking votrient. I went to moffitt cancer center to have the timer in my liver removed but when they went in to remove part of my liver they notice more small tumors on my intestines walls so they didn’t do the surgery because of the high risk. This they didn’t see on the scan but saw them when they went to do the surgery
in 2021 i had a Gist removed the size of an md apple pluss 10 pc of my stomach 6 month after they docs found cancer in my left Kidney tube i had 4 goes at removing the cancer with lazer the last 8 months now they want to see if i am suitable to remove the kidney i am at high risk because of age 81 A F and Kemo tablets part from that i am a normal 81 yr going 70 loving life not too sure what to do about the operation!
Hello all,
I've had a CT scan of the whole abdomen last month because of a pulsating rhythm in my stomach. They found a large mass lesion of 8.8x9.9 x 10cm by size and said it's a possible GIST.
I'm now going to try Immunotherapy hoping it will shrink before going for surgery.
Hope we can all help each other by sharing our experiences here.
in 2021 i had a Gist removed the size of an md apple pluss 10 pc of my stomach 6 month after they docs found cancer in my left Kidney tube i had 4 goes at removing the cancer with lazer the last 8 months now they want to see if i am suitable to remove the kidney i am at high risk because of age 81 A F and Kemo tablets part from that i am a normal 81 yr going 70 loving life not too sure what to do about the operation!
Ok yes they notice a couple of hundred small spots like buckshots all over my intestines and I have a few spots as well in my liver. They refuse to do the surgery because of high risk. Do anyone know any cancer. Institute that May be able to perform surgery in a case like this. Please let me know. Thanks
Hi there.
I was diagnosed with a golf ball sized hemorrhaging GIST in 2004. I was 33 at the time and very little was known about them then. I had a complete resection along with 20% of my stomach removed.
The first three years I did PET/CT scans every 6 months along with endoscopic ultrasounds. Now I do yearly endoscopies and colonoscopies. It’s 18 years now. At my last one they found a submucossal tumor in my Cecum and removed half of that along with my appendix. Thankfully it was benign. I have also had thyroid cancer and 2 different breast cancers since then.
I was diagnosed 6 months ago with stage IV GIST tumors in my pelvis and omentum. I am 53, otherwise healthy and on Imatinib and the tumors appear to be shrinking. My question is, is there no immunotherapy available? It seems like for all the clinical trials, you have to have been on Imatinib or others for years and it no longer works. By that time, I would think, a person may have kidney, liver, or heart problems and years of a decreased quality of life.
I was diagnosed 6 months ago with stage IV GIST tumors in my pelvis and omentum. I am 53, otherwise healthy and on Imatinib and the tumors appear to be shrinking. My question is, is there no immunotherapy available? It seems like for all the clinical trials, you have to have been on Imatinib or others for years and it no longer works. By that time, I would think, a person may have kidney, liver, or heart problems and years of a decreased quality of life.
Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in your pelvis and omentum. I am sure that you are glad that your tumors appear to be shrinking.
You are asking some good questions about immunotherapy. As I looked for other members with cancer in the area of the pelvis and omentum, I see that many are members in the area of gynecological cancers. Was the cancer in your pelvis a gynecological cancer as well?
I did look for some information on GIST tumors and immunotherapy and found information on the National Institute of Health website:
Look into joining the GIST Support International ( gistlistserv)
There is an online support group with a wealth of information and support for patients ,caregivers and families. It has been a lifeline for a dear friend when newly diagnosed Most important is to have a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider.
Connect
Connect
Like
Helpful
Hug
Welcome @fredkj. I'm tagging a few other members like @ta52 @kakb @anxious4nothing @amyj2022 who have experience with gastrointestinal stromal tumors (GIST).
While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with a GIST tumor in 2018. I underwent robotic surgery to have the tumor removed. 1/3 of my stomach was removed during surgery due to the tumor being imbedded deep within my stomach wall.
It is 4 years later, and except for small meals 6x a day in lieu of 3 large regular meals, I have not had any aftereffects of this journey. It was concluded that if cancer cells were present, they were of a "slow" growth kind. I had follow ups every 6 months and my last visit in 2021, I was released from further follow ups.
-
Like -
Helpful -
Hug
8 ReactionsYes I was diagnosed in 2019 I’ve taking 3 types of medication and now I’m taking votrient. I went to moffitt cancer center to have the timer in my liver removed but when they went in to remove part of my liver they notice more small tumors on my intestines walls so they didn’t do the surgery because of the high risk. This they didn’t see on the scan but saw them when they went to do the surgery
-
Like -
Helpful -
Hug
3 Reactionsin 2021 i had a Gist removed the size of an md apple pluss 10 pc of my stomach 6 month after they docs found cancer in my left Kidney tube i had 4 goes at removing the cancer with lazer the last 8 months now they want to see if i am suitable to remove the kidney i am at high risk because of age 81 A F and Kemo tablets part from that i am a normal 81 yr going 70 loving life not too sure what to do about the operation!
-
Like -
Helpful -
Hug
5 ReactionsHello all,
I've had a CT scan of the whole abdomen last month because of a pulsating rhythm in my stomach. They found a large mass lesion of 8.8x9.9 x 10cm by size and said it's a possible GIST.
I'm now going to try Immunotherapy hoping it will shrink before going for surgery.
Hope we can all help each other by sharing our experiences here.
Thank you.
-
Like -
Helpful -
Hug
1 ReactionOk yes they notice a couple of hundred small spots like buckshots all over my intestines and I have a few spots as well in my liver. They refuse to do the surgery because of high risk. Do anyone know any cancer. Institute that May be able to perform surgery in a case like this. Please let me know. Thanks
-
Like -
Helpful -
Hug
1 ReactionHi there.
I was diagnosed with a golf ball sized hemorrhaging GIST in 2004. I was 33 at the time and very little was known about them then. I had a complete resection along with 20% of my stomach removed.
The first three years I did PET/CT scans every 6 months along with endoscopic ultrasounds. Now I do yearly endoscopies and colonoscopies. It’s 18 years now. At my last one they found a submucossal tumor in my Cecum and removed half of that along with my appendix. Thankfully it was benign. I have also had thyroid cancer and 2 different breast cancers since then.
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed 6 months ago with stage IV GIST tumors in my pelvis and omentum. I am 53, otherwise healthy and on Imatinib and the tumors appear to be shrinking. My question is, is there no immunotherapy available? It seems like for all the clinical trials, you have to have been on Imatinib or others for years and it no longer works. By that time, I would think, a person may have kidney, liver, or heart problems and years of a decreased quality of life.
Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in your pelvis and omentum. I am sure that you are glad that your tumors appear to be shrinking.
You are asking some good questions about immunotherapy. As I looked for other members with cancer in the area of the pelvis and omentum, I see that many are members in the area of gynecological cancers. Was the cancer in your pelvis a gynecological cancer as well?
I did look for some information on GIST tumors and immunotherapy and found information on the National Institute of Health website:
--Current Status of Immunotherapy for Gastrointestinal Stomal Tumors
https://pubmed.ncbi.nlm.nih.gov/28186088/
Have you discussed the option of immunotherapy with your oncology team?
-
Like -
Helpful -
Hug
4 ReactionsLook into joining the GIST Support International ( gistlistserv)
There is an online support group with a wealth of information and support for patients ,caregivers and families. It has been a lifeline for a dear friend when newly diagnosed Most important is to have a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider.
-
Like -
Helpful -
Hug
1 Reaction