Clearblue Update and three questions.

Clearblue
Clearblue Member Posts: 186
in Head and Neck Cancer #1
Just wanted to update, for those who have been in contact ."We" are now three weeks post RADS.(35 sessions + 5/7 weekly sessions Erbitux.)

2ND degree burns are healing , but tonge is scorched and eating is zero because anything burns, including water. 1.Is there such a thing as a non-burney eadible? Really a frustratingly annoying downer, because:

Swallowing is becoming increasingly difficult, because of possible narrowing of aesophagus (whats left of it)and today she couldnt get food to pass .2. Any suggestions?

Also , looks like fatigue is setting in:
3.What should we check out regarding this? and if this is just a usual Rad thing, how long does it last for?

This RAD covered hypopharynx for neck and aesoph scc.
What waits ahead is further RT(stereotactic because of the supposedly small size) for a lung mass. I understand that this is a three to five session affair. But were back to Fanconi Anaemia risks. Need now to strengthen up somehow and by the time they get to the lung, at least 6 months will have passed since the previouse PET; too long for comfort.

As i've said before , wish i had more time to respond in kind to all posts here and specially to those who need immediate response, but i bearly find longer than an "in and out" of the site these days.

Regards to Sweet, sister in arms
Take Care

Clear

Comments

  • JUDYV5
    JUDYV5 Member Posts: 392
    #2
    S.T.37
    An over the counter rinse available on line that does a good job numbing the mouth. Used at St. Jude for over 17 years. That is when the child whose parent suggested it had cancer. I have tried it with the excessive sores I got with the 5fu it does work.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    JUDYV5 said:

    S.T.37
    An over the counter rinse available on line that does a good job numbing the mouth. Used at St. Jude for over 17 years. That is when the child whose parent suggested it had cancer. I have tried it with the excessive sores I got with the 5fu it does work.

    how about yogurt smoothies?
    The numbing type of swish and swallow worked well for the little pain in Jim's throat that he had (I think it was probably worse than he was admitting, though).

    What about trying a little yogurt smoothie? Might want to let them get closer to room temperature before trying.

    Ensure drinks are another nutritious option.

    I'm sorry it is so difficult.

    Be sure to try whatever the doctor/nurse/onco team is suggesting. They have seen it all.
  • Scambuster
    Scambuster Member Posts: 973
    #4
    L - Glutamine
    Hi Clear,

    Sorry to hear she is having a tough time.

    On the burning in the mouth, the only thing non-chemical I found for the burning was to mix the L Glutamine Powder in the water and that should allow her to drink water (i.e. with the L GP mixed in and swish and swallow). It will also neutralize any burning from foods she tries.

    It also helps with he healing of the mouth and tongue tissue (Mucosa)

    You can mix a larger Tablespoon heaped, in a large glas of water. It's tastless and you can't really take too much so several large Tbs a day is fine.

    First food I had was plain rice gruel or congee.

    Scam
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    Scambuster said:

    L - Glutamine
    Hi Clear,

    Sorry to hear she is having a tough time.

    On the burning in the mouth, the only thing non-chemical I found for the burning was to mix the L Glutamine Powder in the water and that should allow her to drink water (i.e. with the L GP mixed in and swish and swallow). It will also neutralize any burning from foods she tries.

    It also helps with he healing of the mouth and tongue tissue (Mucosa)

    You can mix a larger Tablespoon heaped, in a large glas of water. It's tastless and you can't really take too much so several large Tbs a day is fine.

    First food I had was plain rice gruel or congee.

    Scam

    Swish and swallow
    Swish and swallow L-Glutamine. The Glutamine helps soften the water a bit and makes it easier to swallow.
  • Clearblue
    Clearblue Member Posts: 186
    #6
    sweetblood22 said:

    Swish and swallow
    Swish and swallow L-Glutamine. The Glutamine helps soften the water a bit and makes it easier to swallow.

    *!^!@!!!
    Swallowing has become progressively worse.
    Woke up to no food or liquid passing down at all. We would swallow if we could.
    WRETCHED is her fear of not being able to eat again ever.
    Just came back form ENT scope. Well they can only see till the vocal chords and not below to the aesophog.

    She feels she needs dilation.
    Sweet, tell me re your dilations. (Spare me the fainting part)

    Fear like with all dilations, is perforation, which then would have to be drained through surgery.

    Good to hear from you all
    Clear
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    Clearblue said:

    *!^!@!!!
    Swallowing has become progressively worse.
    Woke up to no food or liquid passing down at all. We would swallow if we could.
    WRETCHED is her fear of not being able to eat again ever.
    Just came back form ENT scope. Well they can only see till the vocal chords and not below to the aesophog.

    She feels she needs dilation.
    Sweet, tell me re your dilations. (Spare me the fainting part)

    Fear like with all dilations, is perforation, which then would have to be drained through surgery.

    Good to hear from you all
    Clear

    Sorry to read this Clearblue.
    I know that I had to wait for my dilation for a few months after rads to wait for some healing to occur and for some swelling to go down. Maybe that's just me though. Lemme think. I was done on 5/15 and I think my 2nd dilation was the 3rd week of October. (so 5 months later) Then the 3rd stretching was in January. Maybe she will heal more quickly than I did. Especially if you use the Glutamine. I would think that since it is given to bone marrow transplant patient to help with mucacitis that it's ok for us FAs. If she can't swallow it, just rinse and hold in mouth.

    The 2nd one I had, was my first after cancer. That one they actually went thru my peg tube hole. The stretched me from 2mm to 9mm. They changed my tube while I was out of it too. To a shorter hose one. I was able to swallow yogurt and purée.

    Then in January they stretched me again. This time they just did it the regular way, not thru peg. I also got rid of the tube that last time and they put the mic-key button in. Then I was able to swallow some foods. Minced and soft foods.

    Tell her not to panic yet. I know that fear of not eating again. It sucks. I fought tooth and nail to eat again. It's not impossible to come back from. As a matter of fact, I'm starting to really have to monitor what I'm consuming. I was 111 on my scale yesterday. :) My old clothes don't fall off me anymore. Getting closer to fitting!

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