My brother is in his 6th week of radiation and he can't eat a thing. The doctor said he most likely will need to go on a peg tube. I have asked him to join this forum but he keeps stalling it. I have sent him many of your advice and opinions.
He has told me he loves your advice and opinions. But he still hasn't joined. I asked him to send me what hes feeling and this is whag he said:

"Only soft food I can eat right now is egg yolk how mommy makes them ..I made a shake and wanted to cry...Maybe I'm putting something in it that has acid
I put ice cream, ensure, honey, kid peanut butter, milk, and Nutella ..I took one sip and it felt like I instantly got an ear infection in both ears that was unbearable...It was ringing for about 5 minutes, my eyes started to tear up. As far as my tongue goes..The mucositis is so big and bad that I can barely chew, I can't eat anything sour, hot, spicy, acidic, citric. Very sensitive to Hot and Cold foods. The back of my throat every time I swallow (even if it's my own mucus) feels like a knife is scraping it up and doesn't go away from the lidocaine and Maalox mouthwash (haven't tried swallowing it yet because of the taste)..Ask them how long does it take for the mucositis on the tongue to go away. That's the main thing that's holding me back from eating more. Other than the pain in the back of my throat ..These last 4 days the pain level has turned up like 60%. I want to avoid the PEG tube so bad. Ask them a milk shake formula that doesn't burn my tongue and barely hurts when I swallow. Tell them I said thank you."

Last edited by ak123; 10-19-2014 04:36 PM.

22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old