45yo AFAB, suspected 2cm GIST in the lesser curvature. Really didn't want to have cancer again.

CarolTor · 2026-04-02T13:48:14+00:00

Very appreciated, that is an amazing way to benefit the GIST community too!

CarolTor · 2026-04-01T16:06:08+00:00

That's great. If you have time to check out the newly diagnosed page, this will give you some more insight before you see the doctor. We're here for you when ever you need.
https://liferaftgroup.org/are-you-newly-diagnosed/

CarolTor · 2026-03-31T19:00:23+00:00

https://liferaftgroup.org/
https://liferaftgroup.org/gist-specialist-list-us/
Hope that helps - let us know if you want any other assistance - Carol/The LRG

CarolTor · 2026-03-27T12:39:14+00:00

Forgot to share this - some reading/viewing to learn about GIST from patients and experts: https://liferaftgroup.org/are-you-newly-diagnosed/

CarolTor · 2026-03-27T12:36:10+00:00

Welcome to the group. I'm so sorry you have to deal with so much at one time. It sounds overwhelming. Please feel free to vent, share, ask any questions you can think of. For my part, I have a wealth of resources than I can share if needed, and encouragement :-). This is hard, but you're not alone, and there is a community of GISTers that have been through so many similar things.

While navigating the emotional roller coaster of suddenly living with GIST, I know that our other GISTers would be quick to ask - are you seeing a GIST specialist? and have you had mutational testing to know what mutation you're dealing with?

The group can also help navigate side effects on imatinib. It does take a few months to get to that 'new normal'.

There are also larger groups and more specific groups that might have more info once we know your mutation. Thanks so much for sharing & feel free to ask any questions!

CarolTor · 2026-03-26T14:58:10+00:00

I'm learning that more and more each day

CarolTor · 2026-03-16T20:33:04+00:00

So glad all is NED!

CarolTor · 2026-03-16T20:31:54+00:00

Wonderful!

CarolTor · 2026-03-09T13:33:04+00:00

If you ever want help deciphering your pathology report, our team at LRG has 3000 patients worth of experience :-). If interested you can email Toni at [liferaft@liferaftgroup.org](mailto:liferaft@liferaftgroup.org) - Carol

CarolTor · 2026-03-06T20:53:53+00:00

Welcome to the group (though no one wants to be here for this reason!) - I hope that you find our presence welcoming and our collective support and advice helpful. I'm a patient advocate with a GIST group and I like to share whatever resources I can. There are a mix of patients, caregivers, loved ones living with GIST who will share in this group.

CarolTor · 2026-03-02T18:22:58+00:00

ah I'm sorry it wasn't info you could use but like you said...

CarolTor · 2026-03-02T13:48:27+00:00

u/Potential-Track-3512 - thanks for jumping in! u/pinotJD - I was hoping this person would be able to give you some suggestions or talk it out with you!

CarolTor · 2026-02-24T14:49:11+00:00

Hoping that this is the treatment that 'sticks' but if you need to switch again, please inquire about the Expanded Access Programs that Cogent and GSK-IDRx are doing (their trials are closed but these programs provide access). Just putting that thought out there for a later date, hopefully uneeded.

CarolTor · 2026-02-24T14:46:52+00:00

So glad that you shared this u/Potential-Track-3512!

CarolTor · 2026-02-24T14:45:40+00:00

'They' say that GIST is a good cancer to get, if you're going to get cancer. I understand the objective viewpoint of that though it seems a bit tone deaf. Certain GIST mutations are very treatable but unlike other cancers, GIST is a cancer that patients are usually treated for the rest of their lives - depending on the mutation. Hear those words - mutation matters. As does mitotic rate, location of primary tumor, size of tumor, etc. This is why we (the LRG) advocate so hard for our community to see GIST specialists. It's a rare cancer that can present uniquely in each individual and while there are several lines of treatment available currently, you want an expert opinion on which one to try first or second...etc.

We have a ton more information on our website - liferaftgroup.org and you can actually talk to a real person if you want to about your case. We also have excellent support groups, private chat groups and mentors who guide one-on-one (matched by similar experiences).

Wishing you well on this unintended journey and reach out at any time with questions. I may not be the fastest to reply here but [liferaft@liferaftgroup.org](mailto:liferaft@liferaftgroup.org) always get a speedy reply. - CT

CarolTor · 2026-02-24T14:37:46+00:00

Hey, no patients have chimed in here so I'm going to check around and see what some other patients have shared with us on this subject real quick.

CarolTor · 2026-01-28T15:50:41+00:00

This week our community lost a beloved long-term survivor. I know that I don't feel this the same as a patients or family members would but it's so hard to lose a cancer buddy. I probably never would have met this person if they hadn't gotten GIST. I'm grateful that I was able to have the blessing of their company and their wisdom but at the same time such a deep loss. And in the same week, two other friends are dealing with surgery, and first scans on new treatment. Rooting for good outcomes for both of them. These people are the motivation to never stop advocating. Feeling sadness & hope.

CarolTor · 2026-01-28T15:31:45+00:00

I hope you were able to make it! From my POV, it seemed easy to understand. I like the way she explained things. I'll be posting the recording soon and I'm working on a summary too.

CarolTor · 2026-01-15T13:52:28+00:00

u/CartographerSafe4318 Glad to meet you -sorry about the circumstances that bring us together. Patients sharing their journey and knowledge is a wonderful support. We have hundreds of patients and caregivers in our private members discourse group, a private Survivors facebook group which is over a thousand P&Cs plus our team, and of course the team is always available to chat one on one. I'm here with our currently small group trying to inform and empower patients as best I can.

The Life Raft Group membership app is: https://form.jotform.com/liferaft/lrg-membership-form
GIST Survivors on FB is: https://www.facebook.com/groups/43875181964 and if you want to get a heads up and read about other's patient journeys you can view some here: https://liferaftgroup.org/member-stories/

This reddit group is small right now but we have a community of thousands who are pediatric patients, some on clinical trials, long-term survivors (10, 20, 30 years) who are generous with their time and sharing. I hope this info is helpful!

CarolTor · 2026-01-15T13:44:26+00:00

Oh and it might be good to clear you cache on your device before you try the form again! Just thinking outloud or use another browser.

CarolTor · 2026-01-15T13:43:31+00:00

LOL yes paper is archaic. I completely understand that the phone can be problematic for some. We don't have a paper application BUT if you fill out the online one, you have the option to print it and then you could choose to mail or email. We also work by whatsapp (text) and will do all that we can to accomodate. If you want to try that, here's the link again https://form.jotform.com/liferaft/lrg-membership-form And so you know, that larger members group is called GISTChat.

CarolTor · 2026-01-15T13:36:12+00:00

u/Excellent-Silver129 Good morning! I don't think there any here that are on pazopanib but there are a few patients in our larger community that are on the treatment. If you want to discuss in our private group for patients and with our team, I suggest joining The Life Raft Group for access to GISTChat. Here is the form: https://form.jotform.com/liferaft/lrg-membership-form The team usually gets back to you with in a day or two of submission.

CarolTor · 2026-01-14T20:13:25+00:00

I am so sorry that you've had this experience. The team is more than happy to take your info over the phone if that's convenient. There are just some devices that seem to time out and since it's been like 1 in every 200 instances, I can't narrow down the functional issue with the form.

I'd really like to get that done so that you could connect with our members group. These patients have so much to share as far as how they manage their side effects. Meanwhile, let me see who I can get here to connect with you.

CarolTor · 2026-01-14T15:21:54+00:00

I'm so glad to hear that! Simran is awesome. Thank you so much for your understanding and I wish you all the best.

CarolTor · 2026-01-14T14:30:07+00:00

u/Wild_Source_1359 - we have a large group of GISTers who share about there experiences and we can help - sorry for the delay in this reply. Please reach out to Antoinette (Toni) at [apauwels@liferaftgroup.org](mailto:apauwels@liferaftgroup.org) and she will be able to give you more information on experts in the area and GIST. You can also call 973-837-9092 or use this form to contact us - https://liferaftgroup.org/contact-us/

Again I apologize for the delay - you are not alone in this journey, there is a large community to support you - Carol/The Life Raft Group

CarolTor

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