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Primary Squamous Cell Carcinoma of the Oropharynx and level 11 LN
Head & Neck Cancer | Last Active: Oct 19, 2025 | Replies (16)Comment receiving replies
I am 62 years old and just completed treatment for Stage 3 oropharyngeal SCC at the base of my tongue and involving nodes on both sides of my neck. I received 35 radiation treatments over 7 weeks and 2 rounds of cisplatin ( every 3 weeks). I was supposed to get a third round of cisplatin but my kidney function tests were off and they didn’t want to chance further damage. After about 5 weeks of treatment, I required a feeding tube because I was unable to eat anything by mouth and had lost more than 40 Kg. Even though the chemo and radiation were hard, the feeding tube has been the worst part of the journey so far. I have been hospitalized 3 times because the tube was out of palace and got blocked.
My treatments ended on September 10th. I am tired all of the time and sleep a lot. The dry mouth and thick sputum from radiation, along with pain in my throat is the biggest challenge day to day. I know that I am getting better each day, by however small increments, but it is difficult to keep positive. I hope the exhaustion and inability to focus on anything for any length of time will dissipate over time. Does anyone have experience with how long it may take to get taste back and be able to eat normally after being on a feeding tube. Because right now I feel lost.
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Hello @scottmcf1431. All of us who have survived head and neck radiation can understand how worn out and sick that you feel right now. This is the worst time but as Wm said, you must measure your healing progress from week to week so you can see some progress. It does take months to slowly regain your taste buds and begin to enjoy food again. I survived on smoothies with added protein, cream of wheat, and mashed potatoes. I did not have a feeding tube but probably would not have lost so much weight if I had. Don't forget about swallowing ice chips and an ice pack to your neck for comfort before eating/drinking. Above all, you must remain positive! Find some small thing every day that you are grateful for. Maybe it's just seeing another sunrise, or petting the dog, or spending a few minutes outside appreciating nature. Finding these moments of gratitude will help your attitude each day.
I am 13 years post surgery, radiation, and chemo for SCC and despite metastatic disease and a guarded prognosis, my new normal life is pretty darn good. You can do this too. Just know in your heart that you are healing and, however slowly, you will get better. I like to share a favorite book written by a Mayo Clinic palliative care physician Edward Creagan MD: How Not to Be My Patient. It gave me direction and hope and you might enjoy it as well.