• ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

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

    15 answers
    • ironmikey's Avatar
      ironmikey

      I dont understand

      about 19 hours 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.

      about 15 hours ago
    • ironmikey's Avatar
      ironmikey

      yea thats what I was told BarbarianBham

      about 11 hours 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.

      1 day 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.

      about 18 hours 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.

      about 14 hours 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!

      8 days 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.

      7 days 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

      6 days 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!

      3 days 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!

      3 days 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.

      1 day ago
  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    Support groups

  • ironmikey's Avatar

    ironmikey asked a questionStomach Cancer

    gist cancer spread to liver

    27 answers
    • ironmikey's Avatar
      ironmikey

      I guess that unless I'm in a freak accident this is what will cause my death. I only hope I can mantain a fairly healthy life for as long as possible

      6 months ago
    • Schatzi1962's Avatar
      Schatzi1962

      Sorry i did read wrong

      6 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Don't worry about "processing." Just focus every day on doing what you need to do for treatment, and that'll get you through.

      I think it's great she said you have several options for treatment of your liver and that it's only affected 2% of your liver. Did you have the second CT scan yet, or are you waiting for the results? Are they going to do surgery on the primary tumor in your stomach?

      I hope you will still go to your appointment on 11/27/18, and ask questions to compare the two doctor's opinions. You should ask your doctors about whether you are eligible for immunotherapy and/or a clinical trial, which can give you access to medicine not available to the public. You might consider a third doctor's opinion to tell you which doctor's opinion is right. We usually recommend a National Cancer Institute (NCI of the NIH) -associated Comprehensive Cancer Center. Here's a link of a list of them by state, and there are several in the Philadelphia area. https://www.cancer.gov/research/nci-role/cancer-centers/find#Pennsylvania

      Please continue to update us. It would probably help your feelings to find a support group by asking the doctors and their social workers if there is one. The American Cancer Society is great for giving you information, too.

      If you want another website support group and lots of facts, there is liferaftgroup.org. I just located their list of GIST specialists by state, so here's that link: https://liferaftgroup.org/gist-specialists/ They also have a list of clinical trials available.

      Because GIST is rare, I've read you should go to a large medical center to an oncologist who's treated it before. Best wishes.

      6 months ago