How to wean off feeding tube - or when can I eat real food?

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  • swimbody
    swimbody Member Posts: 68 Member
    #42
    https://csn.cancer.org/discussion/comment/1693559#Comment_1693559

    Hey Larry thanks for sharing your journey my friend. I'm so sorry you are dealing with swallowing issues so many months after you had treatment. Have you been staying in contact with your oncology team? What did your pet scan reveal 2 months after? This doesn't sound very normal for you to have such pain for so long after treatment. As I said in my post I'm at 2 and 1/2 weeks past my last of my 33 total radiation treatments that reached 7,000 rads focused on my neck and throat. I also had six chemo sessions that were debilitating beyond belief. It turned my immune system down almost to death. I'm just curious what your situation is. Where are you located? Are you in the US or are you in Canada? Does your treatment team know about your issue? It sounds like they do.

  • Larry449
    Larry449 Member Posts: 51 Member
    #43
    https://csn.cancer.org/discussion/comment/1693567#Comment_1693567

    swimbody

    First.. people on this forum keep mentioning “Oncology Team”. I don’t have a “team” as such. My ENT did the biopsy and got the diagnosis. He sent me to an oncologist who in turn sent me to a doctor to place my feeding tube. (PEG, not nasal). Then I started radiation. I had one visit to a MO who determined not to recommend chemo. I never heard anything about a speech therapist, a lymphedema therapist nor a dietitian/nutritionist until I found them here on this forum or looked them up myself. My primary Nurse PA referred me to a speech therapist who has me scheduled for a Modified Barium Swallow Study later this week. After that I’ll probably get back to the nutrition for diet advice. My post radiation PET Scan, at three months showed no cancer remaining, so that’s good anyway. I’m scheduled for a follow up CT scan in early March. I’m not really in pain except for irritation of the g tube. It’ll just a nuisance. My complaint is that I’d really like the tube gone but I can’t swallow dry or solid food or anything with much of a texture that sticks to what I’ve dubbed my “Velcro” throat. I’m hoping my swallow study and nutritionist can get me pointed in the right direction. I know that some people are done with this sooner than I and some take longer, but at over five months I’m hoping not too much longer!

    And I am in the U.S. on the central east coast of Florida (If you still consider Florida as part of the U.S., to me it’s a bad choice I made 50 years ago - I know, irrelevant)

    Larry

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #44

    Larry,

    No sweat. I was treated pretty much like you were. If I had gone to a teaching hospital or a larger state-of-the-art hospital things would have been different for me. I basically ended up with just one Oncologist for the radiation. I did not need chemo either. Swim happens to be at a great hospital and he has I think 50 some doctors. He's at MD Anderson in Houston. They have a full-blown research center out there. The closest I have to anything like that on the east coast is Duke and Chapel Hill, NC. When anyone mentions "team" just refer to your 1 oncologist :)

    -Steph

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