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  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #22
    Irishgypsie said:

    Rochester!!
    Hey, Miccmill, Sorry to here about your husband. It's interesting to see that U of R is recommending only radiation also; have you guys pursued any other opinions? I'm goingto see the Medical oncologist Today and discuss is thoughts; however he was on the tumor board that met twice and discussed my case which they came up with radiation only will see.

    My opinion: As far as the PEG tube goes: Memorial Sloan also is starting to follow the trend of waiting on PEG placement! Too many people rely on there PEG tube and let there swallow muscles weekend; which can delay recovery! I got from all three hospitals that on average the pain doesn't kick in until the 3rd week so my plan is still trying to eat as mush as I can until then. Then it's ensure plus (350 calories) 2 bottles 3 times a day; plus water as much as tolerated after week 3! Yes, I agree with everyone on this board; however I am also a Registered Nurse (med-surg, ER, Psych); so i am willing to experiment and see what happens. Good Luck! Would love to talk to some local people for local support: Here is my e-mail and then we can exchange numbers: chased71@yahoo.com!

    Charles

    Late installation of the PEG
    I started treatment without the PEG, at the recommendation of my doctors. I needed it installed at week 4, for a number of reasons. At the time it was installed, my gastro-entero doctor put me on a course of antibiotics, targeted toward preventing skin infections. Turns out the antibiotic he used, Cipro, causes photosensitivity. I had an immediate and violent surface skin burn in the areas being irradiated. I discontinued the antibiotic, but had to take a week-long hiatus from radiation treatments in order for my skin to heal enough to go on with. I have a better understanding of the wisdom of installing the PEG up front. If you need it late, stay away from antibiotics.

    Deb
  • rozaroo
    rozaroo Member Posts: 665
    #23
    D Lewis said:

    Late installation of the PEG
    I started treatment without the PEG, at the recommendation of my doctors. I needed it installed at week 4, for a number of reasons. At the time it was installed, my gastro-entero doctor put me on a course of antibiotics, targeted toward preventing skin infections. Turns out the antibiotic he used, Cipro, causes photosensitivity. I had an immediate and violent surface skin burn in the areas being irradiated. I discontinued the antibiotic, but had to take a week-long hiatus from radiation treatments in order for my skin to heal enough to go on with. I have a better understanding of the wisdom of installing the PEG up front. If you need it late, stay away from antibiotics.

    Deb

    Peg!

    I had early installation of the peg! Rdiologist's advice. However, I was eating everything
    in sight up untill the 3rd week, all of a sudden the brakes went on. Everything tasted bad
    & I could not put anything down. I could drink water that was about it. I started using my
    Peg. I am eight week's post treatment & using it plus drinking ensure. I only lost a total
    of 8 lbs so far. But I would have been a mess without it. I still hve no appetite now &
    miss the social aspect of eating. Had my girlfriend's over for chinese food tonight while
    I had ensure. Everyone & situation is different. Whatever work's for one may not work for
    the other.
  • j3rey
    j3rey Member Posts: 57
    #24
    miccmill said:

    Thank you all for you
    Thank you all for you replys.

    I agree, J3rey, eveyone on this site is incredible and reading about their stories is very inspiring.

    We have our big planning meeting tomorrow so I'll know more then.

    Thanks for all the support.

    Good luck
    Miccmill
    Good Luck with your meeting tomorrow. Hope you are happy and comfortable with the plan.
    Our understanding from our med oncologist and rad oncologist was that if chemo and radiation are planned then a PEG is a good idea. If radiation only will do the trick then you can maybe get by without one. Since we are having radiation only they said better for your muscles etc. if you can force yourself to take nourishment by mouth. That was the advice given to us. I know many people here have had chemo and radiation and were just not physically able to swallow or tolerate food!
    We will just have to see what our experience brings us. Again, good luck tomorrow and keep us posted.
    Jen
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #25
    stevenl said:

    PEG
    Hey Charles,

    They can say whatever they want to say about the peg. I am 4 weeks out and am doing exceptional, or so my rad doc says, and I have a Peg and it is sustaining me. You see, the problem with me is I can swallow fine and can eat a few things but only a few things.
    Everything nauseates me. The smell of certain foods can set me off. I am 6'-2" and weighed
    232 when this started. Consider myself a pretty tough guy. I now weigh 181.4. Without the Peg, I would be dead, no question. I am 52 and feel like I am 75. Not trying to scare you or say anything bad, but I made my docs put one in me when they put in my port. Hang in there and best of luck to you!!

    Best,
    Steve

    nausea
    Steve, that is what happened to me. At about three weeks out everything started nauseating me, and everything got steadily worse. (that was also the peak time of my pain and 'out of it' stage) The smell of the nutren itself was making me gag. I was trying all kinds of weird things like putting a capful of almond extract directly under my nose so I could not smell the nutren while I was feeding myself via PEG. I love the smell of almond extract. It worked for a while 'till that made me gaggy. LOL. I would have been dead without mine too. I did not lose one pound thru radiation. Did great. Docs were proud and amazed. Then the poop hit the fan and before I knew it I was 88lbs.

    I think you are doing great, Steve.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #26
    D Lewis said:

    Late installation of the PEG
    I started treatment without the PEG, at the recommendation of my doctors. I needed it installed at week 4, for a number of reasons. At the time it was installed, my gastro-entero doctor put me on a course of antibiotics, targeted toward preventing skin infections. Turns out the antibiotic he used, Cipro, causes photosensitivity. I had an immediate and violent surface skin burn in the areas being irradiated. I discontinued the antibiotic, but had to take a week-long hiatus from radiation treatments in order for my skin to heal enough to go on with. I have a better understanding of the wisdom of installing the PEG up front. If you need it late, stay away from antibiotics.

    Deb

    d lewis
    deb, i don't think I knew that happened to you. that might have been during the stretch where i was off line. Hope you are doing much better now.

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