Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Laura, I resisted the feeding tube and lost over 60 lbs in the process. I had to be rehydrated in the hospital twice. 12 treatments is still a little early to feel the entire effects of the radiation beast! I have mixed feelings about whether I should have gotten the tube or not. The weight loss was something that the doctors gave me a hard time about. I did look pretty gaunt for a while.
However, at three months post treatment I was eating anything I wanted, even spicy things. My swallowing today, at almost 6 months post Tx is just about normal. I can go to a restaurant and clear the plate. I have gained back almost 20 lb's and add about 2 lb's a week on average. Was this a benefit of NOT getting the PEG tube - I don't know, but it may have played a role.
I got through the rough spots with additional morphine pills for the breakthrough pain prior to eating or drinking on top of the Duragesic patches I was already taking for long term pain relief.
PEG tubes are part of standard practice guidelines for head & neck patients so it is no surprise to me that they are pushing it. There is a SMALL minority of us here who did fine without one. Some of my doctors practically considered it AMA (Against Medical Advice) not to get it while others (like my oncologist who is a head of department) weren't too terribly concerned.
You can always have one put in later if you need it, but don't wait until you are too beat up or they might hesitate to install it. Work out an agreement with your primary doctor that if your weight gets below a certain level, then schedule it in, if this is what suits you.
You also didn't mention the type of radiation you are having. I had IMRT which minimized tissue damage in the throat, I am sure that it made a big difference.
It sounds like you are tolerating chemo really well! I am still having physical therapy for all the time I spent hanging over the toilet bowl ;-)(that IS a little exaggerated but I was sick a lot).
"To get" or "not to get" is a controversial subject and I am sure that you will be able to sort this out once you get more information.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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