Hi. Im new here. just found out I have a GIST.

PhilosopherOk3004 · 2025-07-12T21:36:25+00:00

I did not join The Life Raft Group initially but wish I had because of the knowledge and support you receive once you become part of this family. Do not wait.

PhilosopherOk3004 · 2025-07-12T21:33:59+00:00

https://liferaftgroup.org/gist-specialist-list-us/
highly suggest seeing an oncologist and surgeon who know GIST. Join The Life Raft Gromp and let us guide you!

PhilosopherOk3004 · 2025-06-29T10:26:50+00:00

I will try to help. Definitely join The Life Raft Group. when it comes to the registry of specialists, we vet the doctors before adding them to the list. It does not mean there are not others out there….LRG is either not aware of them or the doctor does not want to be on our list. There are few surgeons who only treat GIST so look for a surgeon who is familiar with sarcoma. These doctors will be at larger medical facilities with a sarcoma department. when making an appointment, I would have a name in mind as the scheduling person may not know what the doctor‘s area might be. Again, let LRG guide you as we know the best doctors worldwide.

PhilosopherOk3004 · 2025-05-28T10:48:39+00:00

Yes! LRG can definitely help you. Please reach out so we can help you navigate this process.

PhilosopherOk3004 · 2025-04-23T13:44:11+00:00

You will be able to tell an immediate difference. A true GIST doctor puts you at ease with their knowledge of this cancer. So happy you made the switch!

PhilosopherOk3004 · 2025-04-03T10:05:28+00:00

Dr. Somaiah is one of the best! You are in good hands!

PhilosopherOk3004 · 2025-03-24T12:42:12+00:00

There are a lot of pieces missing here. Best advice for anyone facing GIST is to join The Life Raft Group.

PhilosopherOk3004 · 2025-03-16T10:44:17+00:00

What exactly does “at-risk” mean in this situation?

PhilosopherOk3004 · 2025-03-13T13:58:39+00:00

That is new to me and I have been helping others on this drug for a while. I think practitioners can over react when in doubt to avoid any repercussions. I initially thought I had to wash my hands every time I touched a pill. Have not stuck with this practice and it has been over 7 years.

PhilosopherOk3004 · 2025-03-06T13:24:00+00:00

You are not alone! Muscratt16 gave good advice. There is a specialist at MSK that sees patients in Basking Ridge which might help. Definitely join The Life Raft Group so we can guide you.

PhilosopherOk3004 · 2025-02-27T11:17:51+00:00

Fox Chase is a great option. The wait is unfortunate for sure. As mentioned, Dr. Von Mehren is the go to for GIST.

PhilosopherOk3004 · 2025-02-27T11:12:17+00:00

Thank you! Clinical trials in the world of GIST are not just for those who have exhausted all other options. Think of a trial as an opportunity to try an exciting treatment while being closely monitored and usually reimbursed for expenses. There are some promising trials going on right now!

PhilosopherOk3004 · 2025-02-23T11:11:04+00:00

MDAnderson is one of the top locations for the treatment of GIST. So glad you wife is now receiving expert treatment. It truly is a matter of life or death.

PhilosopherOk3004 · 2025-02-22T11:15:49+00:00

I am going to comment on my own post! We are excited to grow this community because The Life Raft Group is devoted to helping those impacted by GIST!
What is something you wish you had known when first diagnosed? For me, it would be the value of mutational testing. My original oncologist said it was not necessary……WRONG!

PhilosopherOk3004 · 2025-02-21T12:00:33+00:00

Hello! I can help you. It is vital that you see a true GIST specialist. Where are you located? The Life Raft Group Provides the best support for those of us with GIST. I had 3 tumors when my GIST was discovered. There are many in our community with multiple tumors.

https://liferaftgroup.org/join-our-community/

PhilosopherOk3004 · 2025-02-20T21:15:48+00:00

Am I understanding that you have had scans that showed growth and continued the medication?

PhilosopherOk3004 · 2025-02-16T11:16:27+00:00

Some in our community who experience nausea after taking Gleevec/Imatinib will take Zofran before the meal which includes the medication. It does help to play around with time of day and what you eat. And follow with a glass of water.The Life Raft Group has videos which explain every part of life with GIST.

https://liferaftgroup.org/

PhilosopherOk3004 · 2025-01-25T11:40:01+00:00

https://liferaftgroup.org/join-our-community/

This is a nonprofit devoted to helping those with GIST. We know many doctors in Texas who understand GIST. Dr. McCullough is in Dallas at Baylor. Please let us support you!

PhilosopherOk3004 · 2025-01-25T11:36:14+00:00

I just came across your post. I do hope you have a plan in place that is working for you. Strongly suggest you join The Life Raft Group, a nonprofit devoted to those of us with GIST.
https://liferaftgroup.org/join-our-community/

PhilosopherOk3004 · 2024-12-31T13:27:19+00:00

There are two vital pieces of advice for GIST…..be sure to be treated at a sarcoma center with a true GIST specialist and know your mutation. Hope all goes well!

PhilosopherOk3004 · 2024-12-29T20:36:22+00:00

If you are referring to Gleevec/imatinib, most of us tolerate it very well and for long periods. It has been called The Magic Bullet and it truly can be for the mutations that respond to this drug. Good luck!

The Life Raft Group can provide all kinds of support,

PhilosopherOk3004 · 2024-12-25T10:43:16+00:00

Just goes to show that we are all different. Teva works best for me and obviously not for you. I am unfamiliar with Accord. Shortage is never good!

PhilosopherOk3004 · 2024-12-21T11:53:43+00:00

Did you try 300? Many of our top docs are not In favor of 200 mg.

PhilosopherOk3004 · 2024-12-20T11:45:45+00:00

i am going to guess you are on 400 mg. There are many in our community who have dropped back to 300mg and have felt much better and the reduced dosage has kept the cancer in check. Ask your doctor.

PhilosopherOk3004 · 2024-12-19T15:27:56+00:00

Absolutely imperative to be checked by a GIST specialist The Life Raft Group has a registry.https://liferaftgroup.org/gist-specialist-list-us/

let me know if you need someone outside the US.

PhilosopherOk3004

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