GIST cancer

spear
spear Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
My mother was diagnosed in 2005 with GIST cancer. Surgery was performed right away and most of the tumors were removed. It was all over her abdomen, small intestine, liver and other areas. She was given 400mg of Gleevec to help stop the growth of the other tumors that were unable to be removed. The tumor remained the same for alomst 5 years. My mother became ill in the summer of 2009 with an upset stomach and a bad case a constipation. After a routine CT scan in Oct 2009 it showed that there was more growth. The tumor had returned in her abdomen and was greater than 10cm. She was taken off of Gleevec and put on
Sutent for 3 months. She handled the Sutent ok beside the hand foot syndrome. After another scan it had shown growth in her tumors so she was qualified to get Nexavar. She has been on Nexavar for 2 months and the side effects have been terrible! She has no energy, or appetite. She drinks a half glass of water and feels full. She has also lost a lot of weight, even though she didn't have much to lose. She looks prenant from the size of the tumors. She goes today for the results from her most recent scan. I am trying to stay positive but from the growth of her stomach and the way she has been feeling I don't think we are going to get good news. I will post later with her results. Please pray for my mother. I would love to talk to anyone that has been through GIST cancer.

Comments

  • virginia55
    virginia55 Member Posts: 1
    #2
    GIST CANCER
    Hi, my name is Albenia Knight, i was diagnosed with Gist in 2003, I just found out a month ago that I now have four more tumors, I understand what your mother is going through, I think that most people don't understand anything about this form of cancer including most cancer doctors. There are no support group for this particular type of cancer and almost no one to talk to about it. When I first found out about this cancer, my doctor had to do research along with me because she was not familiar with it. At that time Gleevec had just come out and was still in trial stage and I went through the clinical trial. Research that I did said that if you had a tumor 10 centermeters or more not to stop taking Gleevec, but my cancer doctor took me off of it saying that the trial was over and that I no logner needed to take it. Well, I talked a friend of mine who works in a health food store and my sister visited the store and talked to the manager who was telling me about a friend of her's whose husband was diagnosed with cancer and given a few months to live. She told her about a mushroom pill that is suppose to help fight cancer and kill the cells. I finally got enough nerve to get the pill this month and I am taking it, it's called purple mushroom defense. It sells for $42.00 w/tax, at this point I am also trying the alkaline diet which gets rid of the acidity in the body. I am feeling better but let's just see if it works. I am not telling you to try it but hey, I am open to anything at this time and I know that natural is always better than chemical. I would like to take this time to say that I am deeply sorry that your mom is going through this but take strength, God is able to heal, there is nothing that he can not do!

    Yours Truly,

    Albenia Knight
  • Rodman
    Rodman Member Posts: 1
    #3
    virginia55 said:

    GIST CANCER
    Hi, my name is Albenia Knight, i was diagnosed with Gist in 2003, I just found out a month ago that I now have four more tumors, I understand what your mother is going through, I think that most people don't understand anything about this form of cancer including most cancer doctors. There are no support group for this particular type of cancer and almost no one to talk to about it. When I first found out about this cancer, my doctor had to do research along with me because she was not familiar with it. At that time Gleevec had just come out and was still in trial stage and I went through the clinical trial. Research that I did said that if you had a tumor 10 centermeters or more not to stop taking Gleevec, but my cancer doctor took me off of it saying that the trial was over and that I no logner needed to take it. Well, I talked a friend of mine who works in a health food store and my sister visited the store and talked to the manager who was telling me about a friend of her's whose husband was diagnosed with cancer and given a few months to live. She told her about a mushroom pill that is suppose to help fight cancer and kill the cells. I finally got enough nerve to get the pill this month and I am taking it, it's called purple mushroom defense. It sells for $42.00 w/tax, at this point I am also trying the alkaline diet which gets rid of the acidity in the body. I am feeling better but let's just see if it works. I am not telling you to try it but hey, I am open to anything at this time and I know that natural is always better than chemical. I would like to take this time to say that I am deeply sorry that your mom is going through this but take strength, God is able to heal, there is nothing that he can not do!

    Yours Truly,

    Albenia Knight

    gist
    I was diagnosed with gist Jan. 2009. Took gleevec until Octl6, 2009...surgery next day. Dr. Abdalla at M.D.Anderson Cancer Center in Houston....I am cancer free, but Dr. Trent and Dr. Abdalla advised me to continue gleevec.. I would encourage anyone with this type cancer to go to a cancer center.....when I was first diagnosed the cancer was inoperable, but thank God for giving us such good oncologists at these cancer centers. I will be glad to share and give encouragement. Please comment . Emily
  • goodhealth3
    goodhealth3 Member Posts: 2
    #4
    Rodman said:

    gist
    I was diagnosed with gist Jan. 2009. Took gleevec until Octl6, 2009...surgery next day. Dr. Abdalla at M.D.Anderson Cancer Center in Houston....I am cancer free, but Dr. Trent and Dr. Abdalla advised me to continue gleevec.. I would encourage anyone with this type cancer to go to a cancer center.....when I was first diagnosed the cancer was inoperable, but thank God for giving us such good oncologists at these cancer centers. I will be glad to share and give encouragement. Please comment . Emily

    Emily,
    I am wondering how
    Emily,
    I am wondering how you are doing. We live in CA, but travel to Houston every three months to see Dr. Trent for my husband who was diagnosed in April 2009. His GIST looks like it is coming back, so he might be headed for surgery. I am thinking it might be this Dr. Abdalla that he will see. What are your impressions of Trent and Addalla?
    L.

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