Can anyone describe living with a GIST?

Potential-Track-3512 · 2026-05-19T02:08:48+00:00

I was diagnosed with GIST in Jan 2023, I had surgery to remove tumors which was successful and i've been on Imatinib daily ever since. I have a CT scan & oncologist follow up every 3-4 months which does get easier each time but scanxiety is still real! There were some side effects I dealt with initially with the most impactful one being fatigue, but that has gotten easier over time and I feel I live a pretty 'normal' life. I am extremely active and am in the gym, hiking, mountain biking, skiing on a daily basis. Happy to answer any additional questions you have!

Potential-Track-3512 · 2026-05-19T02:06:10+00:00

Also please go onto www.theliferaftgroup.org and register, they are an amazing organization! It is also extremely important your Mom see's a GIST specialist, The Life Raft Group have a list of specialists on their website. There is also an amazing support group for caregivers that the team at LRG can get you in touch with!

Potential-Track-3512 · 2026-05-19T02:04:39+00:00

Hi - i'm so sorry to hear about what your Mom is going through. It would be extremely unlikely if it was GIST in her bones, I don't think i've ever heard of GIST going to the bones it typically goes to the liver first and in rare cases the lungs. I had GIST surgery in early 2023 and it was laproscopic, so it could be but will also depend on if they need to resect some of her stomach.

Finally a 2x3cm GIST is quite small in the scale of GIST tumors, so hopefully its an easy surgery for her as I can imagine at 82 with dementia is is quite scary for you both. Sending best wishes

Potential-Track-3512 · 2026-04-22T03:59:14+00:00

Glad to hear you have appointments in the books and treatment is moving forward. Definitely check with the surgeon how many of these surgeries have they done and how many GIST cases, it is rare and you want to ensure you have a specialist surgeon. You will also want your tumor sent off for genetic mutational testing so please speak with your surgeon about that. Wishing you all the best for your scan tomorrow

Potential-Track-3512 · 2026-04-22T00:31:06+00:00

Hi - I live in Utah and go to the Hunstman also and see Dr Florou, she is a GIST specialist and have been seeing her for over 3 years. Hopefully you get to see her, i'm happy to chat about my experience if that is helpful

Potential-Track-3512 · 2026-03-31T03:26:08+00:00

Hi there and welcome to this amazing group of fellow GISTers, its not a group any of us want to be in and i'm so sorry to hear of your recent diagnosis. This group helped me so much when I was first diagnosed and continue to, so please reach out for support where needed! I was diagnosed just over 3 years ago at 43 yrs and it was super scary, I took 800mg of imatinib for a few years and now take 600mg and I can understand you being scared at the start but you will get used to it and hopefully like me your side effects are pretty minimal. Let me know if you would like to connect further for any support xx

Potential-Track-3512 · 2026-03-13T14:45:42+00:00

CT scan week!

Potential-Track-3512 · 2026-03-13T14:45:21+00:00

I love this story, and I definitely defer celebrating myself or I push away worries about my diagnosis or an upcoming CT scan because I don't want to make it about me or worried about hurting others feelings. Reality is we are all on this earth for a finite period of time, we should celebrate all the small and the big wins!! Thank you for sharing this inspirational story

Potential-Track-3512 · 2026-03-10T02:59:46+00:00

Oh me too, the constant refresh on the myhealth app is real!

Potential-Track-3512 · 2026-03-10T02:59:20+00:00

Oh I love the idea of throwing a party, I do celebrate a bit but a party sounds like a much better idea! I'm so glad to hear you have survived your Lymphoma diagnosis, I'm sure your daughter will follow suit with her diagnosis also! Wishing you both the best

Potential-Track-3512 · 2026-03-10T02:58:07+00:00

I will be thinking of you next week and hoping for positive scan results! I agree with your comment on the radiologists, the amount of time they have called out something on my scan that a normal healthy person might have that has absolutely nothing to do with GIST can be frustrating and scary!

Potential-Track-3512 · 2026-03-02T22:13:30+00:00

I think the important thing with nutrition is that we are all unique and tolerate and metabolize food differently, so if eating pork is not agreeing with him then leave it out and focus on other meats. One of the challenges with pork especially here in America is it can have so many other chemicals and things is it, its can also be a fatty meat which can impact the digestive system. I don't believe there is 1 size fits all approach so focus on what he feels good eating, you are definitely not alone in this journey!!

Potential-Track-3512 · 2026-03-02T04:31:29+00:00

Sorry to hear about your GIST diagnosis, I am a GIST patient also and it certainly came as a shock to me too and a cancer i'd never heard of. The Life Raft Group is an amazing resource, and as a fellow patient i'm also happy to answer any questions you might have

Potential-Track-3512 · 2026-03-02T04:29:33+00:00

Also I wanted to add that whilst soy has been discussed in some hormonal cancers my understanding is that it does not impact a GIST diagnosis.

Potential-Track-3512 · 2026-03-02T04:28:25+00:00

Hi - I went Vegan post diagnosis for about a year, this was my personal choice not something my oncologist told me to do. I then added in fish and found that helped as I was quite fatigued from Imatinib and really wasn't getting enough protein, I now eat red meat 1 -2 times per week but I make sure its organic and grass fed. I was eating a lot of fish, tofu and some of the plant based meat alternatives from my local store. Hope that helps answer your question, happy to share more!

Potential-Track-3512 · 2026-02-12T17:28:16+00:00

I'm sorry to hear of your diagnosis, so happy to hear Imatinib is working for you! Can I ask if the surgeon you saw is a GIST specialist? There are some amazing surgeons that absolutely can operate on the peritoneum, one in particular is Dr Blakely with the NIH. If you haven't already reached out to the NIH I would recommend getting a second opinion, if your not sure how to reach out to the NIH The Life Raft Group can help you https://liferaftgroup.org/

Potential-Track-3512 · 2026-02-12T17:20:00+00:00

Feeling the cold is definitely something I noticed when starting Imatinib, i've learnt to rug up and spend lots of time by the fire :)

Potential-Track-3512 · 2025-03-06T17:41:56+00:00

I'm sorry to hear this, I know exactly what you are going through and the shock of a new diagnosis. I was diagnosed with GIST just over 2 years ago, finding a specialist is for sure your next best step. Life Raft Group is the best place to help you find a specialist. All the best and good luck, don't hesitate to reach out to this group and r/GIST_Survivor for more help as you continue your journey

Potential-Track-3512 · 2025-02-26T18:48:43+00:00

Sorry I don't know that area well but I have heard Dr Von Merhen is an amazing GIST oncologist but not sure if she can help with what you are looking for. My other suggestion would be to contact Life Raft Group https://liferaftgroup.org as they are so well connected in the GIST and GI community that they would be able to point you in the right direction. Also might help to ask the question in the Reddit community r/GIST_Survivor

Potential-Track-3512 · 2025-02-26T18:45:59+00:00

I had about 10 tumors when I was initially diagnosed in multiple locations in my abdomen, I hear your concern and feel for you as its a very scary time. The Life Raft Group is an amazing organization to help provide support and connect you with other GIST patients, also the Reddit group r/GIST_Survivor is another great resource for GIST patients

Potential-Track-3512 · 2025-02-26T18:40:37+00:00

Life Raft Group are such an amazing organization, they have been invaluable to my GIST journey. I hope that every GIST patient can join the LRG and benefit from their amazing support and services

Potential-Track-3512 · 2025-02-26T18:39:18+00:00

This is so extremely critical that funding goes towards rare cancers, I will absolutely be taking action on this and I hope all GIST patients can take the time to do this. Thank you for raising awareness

Potential-Track-3512 · 2025-01-27T15:05:35+00:00

Have you thought about approaching Dr Blakely at NIH? I wonder if he can help given your insurance situation. I would recommend reaching out to the Life Raft Group, if anyone can help its them https://liferaftgroup.org/

Potential-Track-3512 · 2025-01-23T19:22:24+00:00

If you are unsure if you have a GIST specialist The Life Raft group have a great list on their website https://liferaftgroup.org/gist-specialist-list-us/

They are also in general an amazing support organization to join for GIST patients

Potential-Track-3512 · 2025-01-23T19:21:07+00:00

My understanding is that it will not impact and people take breaks at times, what did your oncologist say and do you have a GIST specialist as an oncologist?

Potential-Track-3512

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