weening myself off the tube...

buellman91
buellman91 Member Posts: 32
in Head and Neck Cancer #1
Im only about three weeks post treatment for rads and a little longer for chemo. This is my second go round with SCC. This time base of tongue tumor, right side neck, Stage 4 BIG, 9 week Chemo Cisplatin and 35 rads. In 2006, Stage 1 left side neck w/radiation only.and at that time I did not use a tube. I remember the lost taste buds etc. but this time, with the combination of chemo I felt so **** I went full tube fairly early, lost my voice and I am having trouble getting back on food!. Is is just too early? Every doctor says I have to wait at least a month before my throat will even start to heal! Anyone else out there witha similar reference

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2
    You have been thru allot
    buellman91,

    You have gone thru allot recently and being roughly 3 weeks out, you are still "Cooking" for a few more weeks. The accumulative results of the radiation and chemo. Your throat is that of a newborn baby, tender and different foods will affect your throat for a spell.

    Go slow, I know that you want to get back to normal as quickly as possible, but some times we get inpatient and rush. How is your swallowing of water, soft foods? I still tend to eat all my foods at room temperatures. Most of us have a pretty red neck after the radiation treatments, now picture the inside of your throat looking the same way. Also, take into account that the passageway has swollen and it is now a bit more narrow.

    My Best to You and Everyone Here
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    MarineE5 said:

    You have been thru allot
    buellman91,

    You have gone thru allot recently and being roughly 3 weeks out, you are still "Cooking" for a few more weeks. The accumulative results of the radiation and chemo. Your throat is that of a newborn baby, tender and different foods will affect your throat for a spell.

    Go slow, I know that you want to get back to normal as quickly as possible, but some times we get inpatient and rush. How is your swallowing of water, soft foods? I still tend to eat all my foods at room temperatures. Most of us have a pretty red neck after the radiation treatments, now picture the inside of your throat looking the same way. Also, take into account that the passageway has swollen and it is now a bit more narrow.

    My Best to You and Everyone Here

    slow down
    seems to be advisable. There has been a lot of damage. There are reasons to go slow. First is the possibility that the unthinkable happens and you have a setback for any reason, medical other, or recurrence,. lets get through at least one 3-4 month scan. Second, the best way for me was to drink the supplements right from the can. If I was doing five per day, then I drank five cans during the day. Invariably, your body will adapt to it's own level of eating by mouth and cans. You will find that eating by mouth results in eating more calories and cut back on the cans as you are able. Weening just occurs when you are ready.
  • bjw1955
    bjw1955 Member Posts: 67
    #4
    I HAD A GOLF BALL SIZE TUMOR
    I HAD A GOLF BALL SIZE TUMOR ON MY VOICE BOX AND WENT INTO RESPIRATORY DISTRESS EARLY ON I HAD TO GET A TRACHOSOMOTY WHICH I STILL HAVE.I WENT THROUGH 38 RADIATION AND 6 CHEMO AND MY THROAT AND AROUND MY TRACH WAS RAW AND SORE FOR 3 MONTHS AT LEAST AND I HAD A FEEDING TUBE. ABOUT THE ONLY THING I COULD TAKE WAS ICE CHIPS.EVERYONE IS DIFFERENT. GOOD LUCK AND NEVER GIVE UP IT DOES GET BETTER.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    too early
    Im in pretty much the same boat as you. First rads, no problem. Second rads are now 8 weeks behind me. Squeaked br without a tube, but on liquid diet bt the third week. Mouth ulcers are slowly healing. I just started back on some solid foods 2 weeks ago. I can get in about 1000 calories this way now, and the rest still comes from ensure. Strangely, my sense of taste is almost normal. Dont know if you will be faster or slower than I have been, but I know it takes awhile. Keep the faith!


    Pat
  • artheri
    artheri Member Posts: 14
    #6
    eating
    I was done with 6 chemos and 35 radiations to mouth and troat the 16th of March, and I primarily get my nutrition from energy drinks. The last week or so has seen major improvements though. I've made different types of meals, like pasta carbonara, burgers with fries etc, and been able to eat like 10-20% of a full meal. I could probably eat more of it, but just getting through that little takes ages and my tongue gets more and more sore as I eat. The great part though is that a lot of the taste is back, just with a bit less intensity than it used to have, but It's still early days and it should improve as I get more taste buds back. I've tried different solid food samples the last 3-4 weeks or so, and earlier it was virtually impossible to even get one bite down. Just keep trying and eventually you'll start to get solid stuff down again... I guess how long it takes differs from person to person. I'm preparing a meal of chicken tikka masala right now. It'll be the most spicy thing I've put in my mouth for months, so excited to see how that goes. Will probably crash and burn though, I suspect at least my tongue will scream in pain!

    Good luck with your progress :)

    Edit: I was correct about he tikka masala :P Tongue was not happy! But got some of it down at least :)

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