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Gist (Gastro Intestinal Stromal Tumors) Cancer

GrandmaEv
Posts: 9
Joined: Jun 2007

Does anyone on here have this? What meds are you taking and how long have you had it? I was diagnosed in 2007. Took 400mg Gleevec then 800mg. Cancer is growing again, now i have to start Sutent 50mg. I will start on Wednesday. I would like to visit with someone who has the same cancer as i do. Thank you. Evie

Your CSN Staff's picture
Your CSN Staff
Posts: 200
Joined: May 2008

Hello Evie,

We encourage you to also post your message on the rare and other cancers discussion board. This could be another way to reach out to other CSN members who might be going through a similar experience. You may also use our search function to locate others with this type of cancer.

Be well,
Your CSN Staff

mslanius
Posts: 1
Joined: May 2009

Hi, Evie!
My dad was diagnosed with G.I.S.T. in 2005. He saw a doctor about his stomach pain and life-long indigestion issues...later an MRI reveald a large apple-sized tumor on the outside of his stomach. It was completely removed, and he was put on a clinical trial for Sutent for over a year. He's had check-ups every 3 and then 6 months, and there has been no change...that the MRI sees anyway. Today he is 71 years old, and is doing well. Praying that this new med will be just what your body needs. The good thing I remember hearing about GIST is that it is a slow-growing form of cancer. My dad's doctor even called it pre-cancerous instead.
Hope that helps some. I know it's tough when you tell people what your diagnosis is and they say, "What is that?!?!?!" My husband recently passed away from a rare form of colorectal cancer. It was so difficult to explain why his cancer was so aggressive compared to other colon cancer.

Blessings,
Michelle

GrandmaEv
Posts: 9
Joined: Jun 2007

Thank you Michelle, So very sorry to hear about your Husband..... Hugs. I was glad to hear your Dad is having such good luck. I am 54yrs old and for the past several weeks i have been very sick. The medication i was on 800mg Gleevec, quit working and the tumors took off like wildfire. Some of them doubled in size, they are taking up too much room around my stomach and i can't eat. I have an abdomen full of tumors, and on my liver too. I was told that it is inoperatible. I've lost 10lbs in 6weeks. I'm taking protein drinks. I just started Sutent a few days ago and i'm hoping to get this crap shrunk back down and under control again. I look 9months pregnant and 90 yrs old. I need to feel better real soon. Thanks. God Bless you. Evie

jmesurvivor
Posts: 1
Joined: May 2010

My name is Jamie and I am 30 years old. In 2004 I was rushed to the hospital after vomiting blood. A tumor in my stomach had ruptured and was filling my stomach up with blood. After emergency surgery, the tumor was completely removed, and I was told that it was non-cancerous. Then last year I went to the doctor, because my right upper abdomen had become very swollen and hard. After some routine test, the found tumors in every part of my liver. For 5 years it had been growing. I now have over 16 tumors in my liver all 5-7 cm. I first started off on Gleevec, each test showed my tumors had grown, and I was so very sick while taking it. I have been taking Sutent since Feb. and my tumors are stable! My doctor says that he doesn't think that my tumors or liver(which takes up over have of my abdomen) will shrink b/c sutent doesn't do that. I know how you feel about feeling older, and looking preggers. Not being able to eat, being tired and out of breath. I think the hardest part is how slowly the healing is. I sometimes feel like I've made no progress at all. Still I continue to pray for a miricle.
God Bless you too.

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