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:
Hello @avidthinker and welcome to Mayo Connect. I appreciate you joining this discussion on GIST. I so like what you said in your second post about how important it is to have "a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider." Those are some important guidelines that can help you advocate for yourself when you have a health issue, especially if it is rare.
You mentioned that you are considering surgery. Does this indicate that a physician has recommended surgery at this time?
Are you comfortable sharing more about your journey with GIST? If so, please share what your symptoms were and how this was diagnosed.
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.
Hello @avidthinker and welcome to Mayo Connect. I appreciate you joining this discussion on GIST. I so like what you said in your second post about how important it is to have "a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider." Those are some important guidelines that can help you advocate for yourself when you have a health issue, especially if it is rare.
You mentioned that you are considering surgery. Does this indicate that a physician has recommended surgery at this time?
Are you comfortable sharing more about your journey with GIST? If so, please share what your symptoms were and how this was diagnosed.
Hello @molavica and welcome to Mayo Clinic Connect. I am glad you joined this discussion group and I'm also glad to hear that you are doing better on Imatinib. It sounds as if your surgery to remove the tumor was also successful.
You said that you went to the ER. Was the surgery done after a CT scan or MRI that was done in the ER? What type of symptoms were you having at that time?
I have been diagnosed with GIST this week. Fortunately appears to be arising from the abdominal wall rather than an organ. I have little information at this point. It's 14.6 x 12.0 x 16.8 cm upper left quadrant. I'm looking to plug in somewhere for this journey.
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
Thank you for sharing the link, will be surely helpful for me as I'm still new to GIST and still thinking about doing surgery or not.
-
Like -
Helpful -
Hug
1 ReactionHello @avidthinker and welcome to Mayo Connect. I appreciate you joining this discussion on GIST. I so like what you said in your second post about how important it is to have "a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider." Those are some important guidelines that can help you advocate for yourself when you have a health issue, especially if it is rare.
You mentioned that you are considering surgery. Does this indicate that a physician has recommended surgery at this time?
Are you comfortable sharing more about your journey with GIST? If so, please share what your symptoms were and how this was diagnosed.
-
Like -
Helpful -
Hug
2 ReactionsYes, I've already registered there. Thank you again for sharing! 👍🙌🙏
-
Like -
Helpful -
Hug
1 ReactionMine was larger than yours and they removed it (ended up in ER). Currently (3 mo later) on Imatinib and doing great.
-
Like -
Helpful -
Hug
1 ReactionThank you for the warm welcome, will post more once there are changes and improvements after a month.
-
Like -
Helpful -
Hug
2 ReactionsThat's great to know. I hope and pray you continue to heal and move on with a normal lifestyle.
Thanks for sharing.
I look forward to hearing from you again, @avidthinker. Are you trying any new treatments that might show improvements in the next month?
-
Like -
Helpful -
Hug
2 ReactionsHello @molavica and welcome to Mayo Clinic Connect. I am glad you joined this discussion group and I'm also glad to hear that you are doing better on Imatinib. It sounds as if your surgery to remove the tumor was also successful.
You said that you went to the ER. Was the surgery done after a CT scan or MRI that was done in the ER? What type of symptoms were you having at that time?
-
Like -
Helpful -
Hug
2 ReactionsI have been diagnosed with GIST this week. Fortunately appears to be arising from the abdominal wall rather than an organ. I have little information at this point. It's 14.6 x 12.0 x 16.8 cm upper left quadrant. I'm looking to plug in somewhere for this journey.
How do I find gistlistserve? I have been newly diagnosed, biopsy confirmed GIST. PET scan next week.
-
Like -
Helpful -
Hug
1 Reaction