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

Genomics England
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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.
She uses her TikTok (@thatgistcancergirl) to spread awareness and share her cancer journey with others.
You can read her story here: bit.ly/3u7v4CV

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12 июл 2022

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Комментарии : 53   
@curtislee6242
@curtislee6242 8 месяцев назад
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.
@patsyhay9592
@patsyhay9592 Год назад
She is very lucky to have lived so long so that’s one good thing I suppose bless her ❤
@jameswilliams3443
@jameswilliams3443 Год назад
🥰hello, nice comment but i want to use this medium to thank Dr Alued, with his herbal medication i was cured completely and permanently. God bless #DoctorAlued on RU-vid visit his page for your order🍇🍇🍇🍇
@elkeschober-lf3xo
@elkeschober-lf3xo Год назад
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!
@parvinderkaur8482
@parvinderkaur8482 Год назад
Do u face problem with matinib'side effects??
@briandelmore7188
@briandelmore7188 Год назад
Hello, so about 3years ago they removed majority of my stomach and my Esophagus due to Gist. Recently after ignoring pain in my shoulder blade and rib cage for many months finally went to be seen and the found about 9 center meter Gist tumor on my right lung. plan for now is it sounds like want to treat it with the Immatinib without surgery due to size of it, and that it is in a hard to reach spot. Curious if ok to ask where you had yours and if they you how long they plan on leaving you on this pill. Hope you are doing well and God bless you and all those fighting this any any other type of Illness.
@CrazyKosai
@CrazyKosai 7 месяцев назад
Hey Brian, I hope you doing well, wish you the best. @@briandelmore7188
@elkeschober-lf3xo
@elkeschober-lf3xo 4 дня назад
First I had a lot of negative sideeffects with Immatinib, espcially with diarrhea. I changed my food a little bit, because I realiced, that I couldn't tolerate lactose anymore. My doctor didn't believe it, but it works. I had much less diarrhea. Silicium also helps here. But don't take it at the same time with Immatinib. After over 10 years I still have some problems with fatigue syndrom. Sometimes I' m so tired, that I have to sleep for a short time. My skin is very thin. I have small injurys all the time. But I can live and work with these sideeffects. I wish you the best​. Elke Schober @@parvinderkaur8482
@GeorgeSukFuk
@GeorgeSukFuk Год назад
How do people actually find decent doctors like that
@jameswilliams3443
@jameswilliams3443 Год назад
🥰hello, nice comment but i want to use this medium to thank Dr Alued, with his herbal medication i was cured completely and permanently. God bless #DoctorAlued on RU-vid visit his page for your order🍇🍇🍇🍇
@lutrueson9000
@lutrueson9000 Год назад
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
@ralemc1960
@ralemc1960 Год назад
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!
@jameswilliams3443
@jameswilliams3443 Год назад
🥰hello, nice comment but i want to use this medium to thank Dr Alued, with his herbal medication i was cured completely and permanently. God bless #DoctorAlued on RU-vid visit his page for your order🍇🍇🍇🍇
@shan9956
@shan9956 Год назад
Cancer survivor here of liposarcoma, sending thoughts and prayers
@jameswilliams3443
@jameswilliams3443 Год назад
🥰hello, nice comment but i want to use this medium to thank Dr Alued, with his herbal medication i was cured completely and permanently. God bless #DoctorAlued on RU-vid visit his page for your order🍇🍇🍇🍇
@carrieanncancino5118
@carrieanncancino5118 Год назад
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.
@bobd429
@bobd429 Год назад
hey Ma'am sorry to bother. I just dont know what to do. my father has the exact same case like yours. only received the bad news about his condition this morning. it hit me so bad and dont know what to do and think right now..
@letshavealook8053
@letshavealook8053 6 месяцев назад
@@bobd429how you’re father is feeling now?
@RepublikAnime
@RepublikAnime 8 дней назад
My i know how big the tumor
@menrasy7815
@menrasy7815 Год назад
Heart breaking , my dad is having GIST stage 4 as well , and I’m so not ready to accept the truth 😔
@lisawhite3648
@lisawhite3648 Год назад
Love an prayers🙏🏻🙏🏻🙏🏻from Philly🇺🇸.How is this lovely young woman today?2023
@myalaynaangel
@myalaynaangel Год назад
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.
@pamransom4179
@pamransom4179 Год назад
I totally understand it is a very deadly disease. My husband tumors were the size of a basketball
@reoii8020
@reoii8020 Год назад
Hang in there, don't ever give in or up.
@mauryanthony1961
@mauryanthony1961 4 месяца назад
Same here, it seems easier to let everything go. Of course I have faith in the God of the Bible and it really is his decision.
@MarkJayAbat
@MarkJayAbat Год назад
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.
@pamransom4179
@pamransom4179 Год назад
Are your skin problems from the medication your on? My husband had them he used really good lotion aquaphor on his hands and feet.
@reoii8020
@reoii8020 Год назад
Your in our prayers, My wife has the gist, SDH type A. Keep your chin up. . We love you. We're here for you
@lorraineowens9547
@lorraineowens9547 Год назад
😢😢😢😢😢heartbreaking 😢😢😢😢😢😢😢 prayers for total healing.
@jameswilliams3443
@jameswilliams3443 Год назад
🥰hello, nice comment but i want to use this medium to thank Dr Alued, with his herbal medication i was cured completely and permanently. God bless #DoctorAlued on RU-vid visit his page for your order🍇🍇🍇🍇
@MRAIDANGWALSH
@MRAIDANGWALSH Год назад
Was it these mutations A1298C &/or C677T?
@SON-of-SMK
@SON-of-SMK 7 месяцев назад
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.
@rebornNavea
@rebornNavea Год назад
I just got diagnosed last year at 28
@CrazyKosai
@CrazyKosai 7 месяцев назад
I hope you're doing well, wish you the best.
@reoii8020
@reoii8020 Год назад
Anyone with SDH A?Taking Glevac? Hows it working
@pamransom4179
@pamransom4179 Год назад
It worked for my husband for 5 years. Unfortunately he lost the fight 2 weeks ago
@reoii8020
@reoii8020 Год назад
@@pamransom4179 Hi Pam, Im so sorry to hear that. I my heart is very sad for you and your loss. I hope you are making it best as you can. I'll pray for you. Keep me updated on how your doing. I know you've been through a lot. Sincerely
@pamransom4179
@pamransom4179 Год назад
@reoii8020 thanks much appreciated
@uqj-jw1sq
@uqj-jw1sq Год назад
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
@morris246
@morris246 Год назад
Can you let me know I have gist as well and taking 400 mg of imatnip which is gleevac. I got this cancer from the oil field and can’t go after dick Chaney old company sucks.
@shamsherahmad7384
@shamsherahmad7384 Год назад
​@@morris246 i have gist cancer use glivec tablet 400 mg last 2 years
@valarymudala8955
@valarymudala8955 Год назад
Please were did you get that herbs
@therealityofthings9574
@therealityofthings9574 Год назад
So you had sarcoma? What stage?
@tracymcgrath1192
@tracymcgrath1192 Год назад
So sorry. Not fair. 🙏♥️🌹
@louarmstrong6128
@louarmstrong6128 Год назад
Have you tried fasting, ivermectin, fenbedazole.... these have had good success with cancer
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