Victory's Journey with Gastrointestinal Stromal Tumor (GIST)...

Patient: Colorectal (Colon) Cancer > Gastrointestinal Stromal Tumor (GIST)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 6 years ago, Female, Age: 63, KRAS mutation positive: No, BRAF mutation positive: Don't Know, Stage IV

  1. 1
    • Victory
    • Experience with Gastrointestinal Strom...
    about 5 years ago
    Victory's Avatar

    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    Best surgeon. Spent tons of time in conferences with my entire family to ensure we were fully aware of procedure. Very patient, informed and helpful. Allieved a lot of our stress

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  2. 2
    • Victory
    • Experience with Gastrointestinal Strom...
    about 5 years ago
    Victory's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Started on Fulfox with Avastin and Oxiliplatin. After 4 treatments, no change oxi was replaced with Irinetican. Had 25% shrinkage of one of the tumors, others were Stable, meaning no growth or spread. After four rounds another CT still stable, no shrinkage. The same was the case after another four and I was then feeling rather fatigue and mouth sores were very trying. I continued to work full time at my job. But felt I was losing strength. Doctor agreed and said I was toxic. I had a four series break from the Irinetican and then felt like there was nothing wrong with me. Full strentgh, great appetite, no sores - yay. Had a CT after not having the irinetican - last Thursday. Met with the oncologist who said most stable the lymph glands in my chest had actually grown from 3mm to 10mm. Not the news we specifically expected but I trust in the only one who can heal me and I rest in that. I have only had one time when I felt yucky and it was my first treatment, however, it was not the chemo, but rather the anti-nausea Compazine that put me under. That was the first and last time I used anything. I do take Neupigen shots every day for seven days after I complete a round of chemo. I wear a computerized pump for 46 hours after receiving chemo. I put it into a small back pack and it has caused NO problems.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • Victory
    • Experience with Gastrointestinal Strom...
    about 5 years ago
    Victory's Avatar

    Still searching

    Clinical Trial

    Doctor believes that since the cells change often and can do so very quickly, I may be experiencing tolerance for the chemo and the cells are not shrinking and have probably become resistant. No the funnest news, I'd say! He is currently researaching trials I may be able to participate in. I am also considering a 2nd opinion as he said two months ago that he was having his "trial finding" staff get on it, but no news as of yet. Disappointing.

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  4. 4
    • Victory
    • Experience with Gastrointestinal Strom...
    about 5 years ago
    Victory's Avatar

    Other

    Celebration

    I celebrate every day, with or without chemo and this situation. I look for the funny things, although losing my eyebrows and lashes was harder than losing my hair, which is usually long and thick - now gone. Since the brief break from Irinotecan my hair is growing back - still brown and the lashes and eyebrows have treturned for the time being. I restarted the Irinotecan yesterday. My nose has become a water hose and drips so much - Kleenex Co must be delighted!! I can easily adjust my wig to either have long bangs or short or even none, which has always been difficult with my own hair. The kids at the school I work at are surprised that my hair can grow so quickly when I switch between wigs. And the support of my family and friends is amazing!!

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  5. 5
    • Victory
    • Experience with Gastrointestinal Strom...
    about 4 years ago
    Victory's Avatar

    Chemo brain

    Side Effects

    I was foggy or could not find a word I wanted to say. It was temporary and almost humorous!

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  6. 6
    • Victory
    • Experience with Gastrointestinal Strom...
    about 4 years ago
    Victory's Avatar

    Hand foot syndrome

    Side Effects

    This side effect was quite a pain - literally but is was also a temporary and was a result of drug Stivarga. I pray no one has to endure what I did - I did get passed it!!

    2 Comments
  7. 7
    • Victory
    • Experience with Gastrointestinal Strom...
    about 5 years ago
    Victory's Avatar

    Loss

    I have lost only my hair - which I know now will grow back. I have gained an understanding of people's fears and pains ans sorows. I am thankful I now understand more clearly what the challenges cancer causes. I believe although I was sympathetic with others I did not realize all they had to go through.

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