Rachel's story | 20 years living with incurable cancer (GIST sarcoma)

Rachel has been living with rare, incurable sarcoma for over 20 years. In this video, she shares her story.

After being diagnosed with GIST (gastrointestinal stromal tumours) when she was 15 years old, she immediately went on palliative (comfort) care. She's now 35 years old and has spent the past 20 years living with GIST. She's tried various treatments to help manage her cancer, including getting 90% of her stomach removed.

In 2017, her doctors suggested genome sequencing to better understand her cancer. The results of the test gave her some new insights on treatments, as well as her risk factor for developing two other rare cancers.

[curtislee]

I got diagnosed with GIST August this year, I'm 51 and male. No prior history of cancer or any significant medical issues, fit a healthy. I'm currently on Imatinib waiting of confirmation of mutation type. I've gotten use to the chemo and the pain, but I'm always fatigued. I do hope I have another 20 years left in me, for the sake of my wife and kids. Take Care.

[elkeschober-lfxo]

Dear Rachel, I had a gist diagnose in the age of 42 and first I thougt after surgery, that I am healthy again. After three years with Immatinib therapy, I tried without, but after two years gist was back. I hat another surgery. Now I take every day 400mg Immatinib and live like this without bigger problems since 2014. Wenn I saw your Video, I was very touched. I wish you a lot of strength and courage. Enjoy your live as much you can! You are such a beautiful and brave young woman!

[patsyhay]

She is very lucky to have lived so long so that’s one good thing I suppose bless her ❤

[ralemc]

Prayers young lady. Live day by day and try not to worry. I have gist and fall in the category you mentioned. Male and 61. This is my second fight with cancer and had Hodgkins in my 30s. Big hugs!

[lutrueson]

I just got diagnosed with cancer and I am not sure what I'm going to do 😭😭😭 trying to take one day at a time

[shan]

Cancer survivor here of liposarcoma, sending thoughts and prayers

[carrieanncancino]

I had this cancer. On October 22, 2014 I had surgery for me to have a new feeding tube placed and 85% of my stomach to be removed because I had a condition called gastroparesis which means my stomach and intestines are paralyzed due to neuropathy due to diabetes . Ten months earlier on January 14, 2014 I had a g tube placed and 6 months before that I was in hospital having tests for my stomach and the throwing up with pain which diagnosed my gastroparesis. But on October 22, 2014 we had no idea I had cancer. It was only found because of the Dr wanting to place a new feeding tube into my intestines. It was found very early in growth it was confirmed through pathology that I had cancer. I never had to have chemo or radiation just surgery. Thank God. This is a rare form of cancer for women. It's mainly found in men who are white and in their 50's and 60's. I was only 42 years old.

[menrasy]

Heart breaking, my dad is having GIST stage 4 as well, and I’m so not ready to accept the truth 😔

[MarkJayAbat]

I’m diagnosed with Gist as well. I am suffering so many skin problems now . I’m 32 years old and but i believe God and I know he will heal me.

[lorraineowens]

😢😢😢😢😢heartbreaking 😢😢😢😢😢😢😢 prayers for total healing.

[myalaynaangel]

They removed my GIST cancer last year. Now, I struggle with the damage the tumors have done. Bloating, belching, incurable pain, trapped gas.... constpation, diarrhea

It is a lonely cancer.... some days, I want to die.

But I have a family... I used to be so healthy.... now I am dying.... I am only 50.

[SON-of-SMK]

Ich habe heute die Diagnose bekommen. 43 Jahre alt. Zuerst hieß es sei ein Polyp. CT wurde gemacht im Sommer dieses Jahr. Alles ok. Dann halbes Jahr später diese Diagnose.

[uqj-jwsq]

really i was diagnosed with GIST (gastrointestinal stromal tumours) to i think it was 2009 then it was cured then it came back in 2016 in my small bowel and i went on gevic it didnt work but then they put me on sutent from 2017-2020 then i had 2 strokes one on feb 14th of 2020 then the next one on april 14th 2020 lucky i 99% recoverd from it then i stopped the sutent and i havent done do treatments after april 14 2020 thats because i started a natural treatment called Wormwood Black Walnut Extract from Gaia herbs 4 times a day for 6 weeks and when i went in for my next pet scan they cant see it no more abd now its been over 2 years now and i go in for my next pet scan in oct of 2022 and we will see if its good or not and im sure it will be good

[MRAIDANGWALSH]

Was it these mutations A1298C &/or C677T?

[ralphogerlyII]

Anyone with SDH A?Taking Glevac? Hows it working

[louarmstrong]

Have you tried fasting, ivermectin, fenbedazole.... these have had good success with cancer