• ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    G.I.S.T. possible surgery

    64 answers
    • BarbarainBham's Avatar
      BarbarainBham

      If you have trouble talking to new people, maybe you should consider moving back where your sister and/or friends are, since you aren't working. (Work is another major place for making friends, which is why I suggested you should volunteer at a hospital every week.)

      Ironmikey, I'd like to help you, but you need to call a counselor who can chat with you for an appointment on Monday. Please don't put it off any more. Best wishes.

      3 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      P.S. I recommend you don't make a point of telling people you meet you have cancer. It'll come up naturally in conversation, and you can say you have some health problems and (?) don't work any more, or (?) don't get out as much as you used to. Most people don't ask what, but you could BRIEFLY mention you just had surgery to have a tumor removed and are just starting to get out again.

      If you were going to a counselor, you could also discuss that. I suggest you don't overthink it, and just let it be natural, but BRIEF. Don't unload on people when you've just met them. Brief conversations about problems are always best, because nobody wants to spend time with somebody who's depressing, right?

      Minimize discussion of cancer if you want to have fun.

      3 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Ironmikey, please update us on whether you called for an appointment with a counselor, preferably one with cancer patient experience. Your doctor's office can recommend one, or may have one in their office or clinic that can help.

      3 months ago
  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    chemo for G.I.S.T.???

    15 answers
    • ironmikey's Avatar
      ironmikey

      I dont understand

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      I don't understand either, since GIST is only effected by the 3 drugs Carm listed, and I'm almost sure they are all chemo pills.

      5 months ago
    • ironmikey's Avatar
      ironmikey

      yea thats what I was told BarbarianBham

      5 months ago
  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    fistula formation

    9 answers
    • carm's Avatar
      carm

      It is a large chamber and every patient I have had who has had it says the treatment is really boring. They usually have a library of movies that you can watch while in there. That is only one option. You say your still not 100% sure you understand. What part of my post are you still unclear about? How can I help to clarify? If you would like to discuss further, I can get my number to you if that will help.

      5 months ago
    • ironmikey's Avatar
      ironmikey

      I dont even know I'll need that. sorry I didn't understand. I don't know what to think... I'm a little scared to be perfectly honest.

      5 months ago
    • carm's Avatar
      carm

      Mikey,
      To be afraid of what you do not know is a natural reaction. We always fear the unknown. But if it is the surgery, I'm sure you will do fine because you have such a desire for life. Those that have a goal, have a direction...they know where they are going and where they want to be. They let nothing deter them from their goal. Remember that these doctors work for you, not the other way around. You have every right to demand clarity, to ask what you can expect with every option you have been given. I will always be right here to help you in any way that I can. It's your right to feel fear, but never let it drive you...just keep pushing towards the life you want to get back to and you'll be there before you know it.

      5 months ago
  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    G.I.S.T Tumor Some growth was found on a portion of the tumor and it's pushing on my bowel. My oncologisgt wants me to see a surgeon since he hopes that this poetion can be cut out and I can continue taking 'gleevec as my treatment. Hasd anyone had A s

    15 answers
    • Molly72's Avatar
      Molly72

      I had a GIST tumor in my stomach about 7, maybe 8 years ago. Had surgery (by a mean surgeon and in a lousy hospital!!) & I am still here. No chemo for it either.
      I have had more trouble with other medical problems, including several other cancers, than I had with the GIST, so perhaps you can get through this rough spot.
      Good luck!

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham (Best Answer!)

      IronMikey, I was diagnosed with GIST and had stomach surgery in 2012-13. I did great regarding the surgery, but mine spread to my abdomen close to my liver before I started taking Gleevec. When I started taking Gleevec, it immediately shrank and so far is still controlled by the Gleevec.

      It's great if you can have surgery to remove it, but your next question could be whether your Gleevec dosage needs to be increased to keep it in control. There are several other drugs developed for GIST, but I was told that Gleevec is the most reliable.(statistically).

      When I was diagnosed, I read that GIST is so rare that patients should be sure they go to a large medical center that's seen it before, referring not only to the oncologists, but to the pathologists who diagnose it. You can always get a second opinion, but sometimes GIST grows very fast, so don't delay. (Your pathology reports note the mitotic rate.)

      Please let me know any specific questions I can help with. I noticed in your profile that you had applied for SS disability. If you don't have it yet, let them know you are Stage IV, and they will expedite it. My first check came in less than a month from when I applied. Of course, it's all dependent on your doctor's office faxing them the records documenting you are Stage IV. Wishing you the Best.

      5 months ago
    • ironmikey's Avatar
      ironmikey

      Hey Barbarian, I did get social security, Thanks. Ufortunately mine already has spread to my liver. I go to Fox Chase witch is pretty well known and my doctor has a good bit of G.I.S.T. experience so I'm told.

      they talked about changing the dose if surgery is'nt an option. They tried to do some sort of molecular testing but my biopsy didnt give suficient results so maybe I'll ask about a new biopsy. AS I mentioned earlier they all agreed that surgery wasnt possible untill this recent scan when they said that the one portion of the yumor is growing against my bowel so I'm meeting with the surgeon on may 23rd. I to Fox Chase Cancer center in Philadelphia by the way. hope to here from you again soon and I'll let you know how it goes when I see the surgeon... thanks Best Wishes

      5 months ago
  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    support groups

    6 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I was going to mention the same thing as Greg did. If there's a Cancer Support Communities (CSC) group in your area, they are phenomenal ... or, the ones I have visited in my area are. I attended a meeting in Philadelphia with CSC - they have a large facility in that area. They brought in cancer survivors from all over the country for a two-day meeting.

      I have a friend (@coco1101) here who runs a support group. I'm not sure if it is still affiliated with the hospital where she was when it was started or not. Anyway, cancer survivors meet monthly for fellowship and information. If she sees this, maybe she'll chime in with more info. We're in Texas so that won't help you, but it may be that your clinic has something similar ... or maybe you could help start something like it.

      Good luck!

      5 months ago
    • IKickedIt's Avatar
      IKickedIt

      Have you checked to see if Einstein or Penn have support groups? Or https://cancersupportphiladelphia?

      I grew up in Plymouth Meeting. Hope you enjoy living there!

      5 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Since you go to a large Philadelphia facility and doctor, ask at the doctor's office also. There's an online GIST group, but I'll have to look it up & give you the link later.

      5 months ago
  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    Support groups