When do I take my peg out?

pmj2011
pmj2011 Member Posts: 25
edited March 2011 in Head and Neck Cancer #1
Hello everyone.. I finished 33 rad treatments and 3 chemo rounds for stage 4 scc of tonsils on 2/01. I am going for 90 day pet and ct on 4/25 and my DR doesn't want to take peg out until I get results. Is anyone in similiar situation?
Thanks...Paul

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Sounds prudent
    90 days is tolerable and can really be an asset to bolster nutrition. Malutruition is the biggest cause of death in cancer patients. Hang in there as the doctor wants to make sure you don't need it further down the line. Once you get a clean scan he/she can yank it in their office.
  • pmj2011
    pmj2011 Member Posts: 25
    #3
    ratface said:

    Sounds prudent
    90 days is tolerable and can really be an asset to bolster nutrition. Malutruition is the biggest cause of death in cancer patients. Hang in there as the doctor wants to make sure you don't need it further down the line. Once you get a clean scan he/she can yank it in their office.

    Thanks for the help..
    Thanks for the help..I am eating soft meals and no tube feeding at all. My current weight is 165lbs. I started at 195lbs.
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    pmj2011 said:

    Thanks for the help..
    Thanks for the help..I am eating soft meals and no tube feeding at all. My current weight is 165lbs. I started at 195lbs.

    You may want to maintain this weight?
    Hi Paul and welcome to the site. Many of us were overweight to start with and find the cancer diet to be one of the few positives of this whole experience. If 165 is a good weight for you go ahead and maintain it. Glad to hear you are getting along well.
  • CajunEagle
    CajunEagle Member Posts: 408
    #5
    pmj2011 said:

    Thanks for the help..
    Thanks for the help..I am eating soft meals and no tube feeding at all. My current weight is 165lbs. I started at 195lbs.

    What I was told.
    My Oncologist said if I could maintain my current weight and not use the tube for 30 straight days, then the feeding tube could be removed. I started in Feb. 09' at 225 lbs and was at 177 lbs. at the end of treatment for Tonsil Cancer in June, 09'. I'm currently at 190-192, and this is the weight I hope to stay forever. Tube was removed in March of 2010.

    Larry
  • buzz99
    buzz99 Member Posts: 404
    #6
    PEG
    Buzz still has his peg although he is eating and not using it. He has had one PET but we have been advised that PEGs should not be removed too soon and that it would be a mistake to do so. Will probably get it removed after the second PET. Keeping it a bit longer is better than having to have it reinserted if the cancer comes back. Just good insurance. Karen
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #7
    PEG
    Prior to my first surgery in September 2005, I weighed 215 lbs, about 30 pounds overweight. As ratface points out, cancer is one heckuva way to diet :).

    Following surgery and treatment, I weighed 145 lbs, a 70 lb loss, and was, of course, on the PEG tube (I had extensive surgery to face, tongue, and neck).

    Eventually, I got back up to 165 lbs, even though after a lung surgery in June of 2007 I dipped back down to 143 lbs. Again, I got back up to about 160. I retained the PEG for all of this time, and for four years in total.

    All the while, I was experimenting with eating foods and becoming more confident every day. When this tube fell out (it was my third), I determined myself not to have it replaced.

    As of last week when I received my third dilation I weighed 135 lbs. Needless to say, we are all concerned.

    I would suggest strongly that you do as others have recommended and keep the tube until you are eating 100% of your nutrition without the tube for an extended period of time without losing weight.

    Best wishes for a speedy recovery!

    Take care,

    Joe
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #8
    soccerfreaks said:

    PEG
    Prior to my first surgery in September 2005, I weighed 215 lbs, about 30 pounds overweight. As ratface points out, cancer is one heckuva way to diet :).

    Following surgery and treatment, I weighed 145 lbs, a 70 lb loss, and was, of course, on the PEG tube (I had extensive surgery to face, tongue, and neck).

    Eventually, I got back up to 165 lbs, even though after a lung surgery in June of 2007 I dipped back down to 143 lbs. Again, I got back up to about 160. I retained the PEG for all of this time, and for four years in total.

    All the while, I was experimenting with eating foods and becoming more confident every day. When this tube fell out (it was my third), I determined myself not to have it replaced.

    As of last week when I received my third dilation I weighed 135 lbs. Needless to say, we are all concerned.

    I would suggest strongly that you do as others have recommended and keep the tube until you are eating 100% of your nutrition without the tube for an extended period of time without losing weight.

    Best wishes for a speedy recovery!

    Take care,

    Joe

    90 days
    That sounds like a wise idea to wait for the second pet scan. You wouldn't want to get rid of it too soon.

    I had mine for 18 months. Was down to 87 lbs so, I needed to gain and maintain before I could get mine out. I was around 99lbs when I had it taken out. I have been able to gain about another 10 lbs since September when I had it removed. You just want to make sure you are done with treatment and that you can gain or maintain your baseline weight strictly by mouth for at least a month. I am still 10-15 lbs less than my starting weight.
  • Pam M
    Pam M Member Posts: 2,196
    #9
    Anticipation
    I, too, had my PEG for much longer than I needed it (it was installed a month before radiation started, and I hadn't used it for feedings for quite some time before it was removed). It seems wise to me, too , to wait for the scans to come back before removing the tube. I remember being very anxious to get mine removed - to me, it was a signal that I was on the mend. Looking forward to you being a member of the second belly button club.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Pam M said:

    Anticipation
    I, too, had my PEG for much longer than I needed it (it was installed a month before radiation started, and I hadn't used it for feedings for quite some time before it was removed). It seems wise to me, too , to wait for the scans to come back before removing the tube. I remember being very anxious to get mine removed - to me, it was a signal that I was on the mend. Looking forward to you being a member of the second belly button club.

    Duration
    I also kept mine for several months after my 2nd PS/CT, just in case, and that made for a little over 15-months. Did not like the idea of having it reinstalled, if need be, and it didn't really give me any trouble- though it do take some getting used-to in the work place, and trying to swing a golf club.

    kcass
  • MDN
    MDN Member Posts: 2
    #11
    Hey Paul,
    I was in your
    Hey Paul,

    I was in your exact same situation 4 years ago. Tonsil cancer, 33 rads, 3 cisplatins, tube. I waited 90 days. I started eating about 3 weeks after the final rad and was eating really well about 2 or 3 weeks after that. I kept it in for 90 days just in case, even though I stopped using it for the last 6 weeks. I had a PS/CT about 150 days after the last treatment and I didn't want to wait that long. If you don't want to wait for a scan, I'd have it pulled as soon as you're eating 100% and have confidence that you don't need it any more. I hope you're doing well. I was stage 3 and I am doing great 4 years later, just had a clean CT yesterday. Tonsil cancer is very, very beatable!
  • adventurebob
    adventurebob Member Posts: 691
    #12
    peg
    Hi Paul,
    I had mine removed about a month and a half after treatment ended. I had stopped using it about a week prior and was eating well. I'm 92 days from treatment and I still haven't had a PET/CT as I have no signs or symptoms of disease and my doc says I don't need the radiation from the PET/CT. I think the advice to keep it in until your scan is pretty solid and yet there is almost no chance that you will receive additional radiation to the head and neck regardless of what your scan shows so there will be no need for the tube. I can tell you this; it is a tremendous morale booster to get that tube removed. Also, it is your decision to make and not your docs, as are all of them. Of course, if you trust your doc it just makes sense to take his advice. A speedy recovery and clean scans for you.

    Bob
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #13
    PEG REMOVAL
    Hi and welcome to the group. I just had my tube removed 3 weeks ago. I am currently between 183 and 187 lbs down from 235-240 in this pic you see of me. I did the 30 days of maintaining my weight without using the tube which is a pretty good weight for me. I am now off of my HBP meds and triglicerides are now normal. I do not intend to get past 200 lbs for the rest of my life as this seems to be one of the positives of going through this ordeal.

    I agree with what the others said regarding chronic weight loss leading to other serious health issues.

    Take care and good luck.

    Best!!

    Mike
  • pmj2011
    pmj2011 Member Posts: 25
    #14
    MDN said:

    Hey Paul,
    I was in your
    Hey Paul,

    I was in your exact same situation 4 years ago. Tonsil cancer, 33 rads, 3 cisplatins, tube. I waited 90 days. I started eating about 3 weeks after the final rad and was eating really well about 2 or 3 weeks after that. I kept it in for 90 days just in case, even though I stopped using it for the last 6 weeks. I had a PS/CT about 150 days after the last treatment and I didn't want to wait that long. If you don't want to wait for a scan, I'd have it pulled as soon as you're eating 100% and have confidence that you don't need it any more. I hope you're doing well. I was stage 3 and I am doing great 4 years later, just had a clean CT yesterday. Tonsil cancer is very, very beatable!

    Thanks for the good words
    I am 60 days out from treatments and eating ok.I am not tasting to much yet but it gets a little better each day. I am going to go for my 90 scan before I remove peg tube. I was in stage 4 as it spread to lymph-node in neck. I am confident the scan will be clean.

Discussion Boards