Primary Squamous Cell Carcinoma of the Oropharynx and level 11 LN

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.

Hello @scottmcf1431 Welcome to Connect and the Head and Neck Cancer group.
Some of us have it a bit rough compared to others yet you seem to lead the way in that respect. Massive weight loss. And as far as taste goes, well, that may take a few weeks to a few months and likely never be exactly as it was previous. Ability to eat “normally” can also be a bit elusive in some of us however we continue to carry on as all things considered, it does get a lot easier and better for most of us.
Each case is different. Each patient recovers at their own rate. Recovery takes longer than most of us would wish, but it does all come together eventually. For now, you likely feel like hell and all seems like some wicked punishment. It does get better. Maybe not day to day but week to week and surely month by month. Recovery is very slow.
The radiation particularly has done damage to surrounding tissue and like a bad burn, will take a while to heal. For now, many patients here can help you to deal with your recovery concerns and questions based upon their own experiences. For now, your original concern about being able to eat: find something you can easily tolerate and eat as much as you like. You need calories primarily. Eventually you will find other foods that work. I lived on pie and soup for a month or more. That was more than twenty years ago. I get where you are.
You have been through the gauntlet courageously.

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.

@sepdvm
Thank you for your support. I greatly appreciate it.

@sepdvm
Your reply is really wonderful to read. It's real life experience- very appreciated!

@sepdvm Hello. I am 19 months from my treatment of 35 radiation and weekly displaying infusions. I stopped the displaying after the 4th treatment because my hemoglobin nosedived. At that halfway point I too required a feeding tube. My tube was a gravity feed using a syringe. The keys for me preventing blockage and infection were to start with water, insert the food extremely slowly and followup with a thorough cleaning of water. Also i made sure to have a minmum of 40 oz of water daily. My feed site did get infected it was important to leave the site open - free of dressing so it didnt get moist.
I was on the tube for 6 months. I slowly incorporated very thin smoothies and broths by mouth. I became transfusion dependent for awhile so I used the tube to take my liquid vitamins because I couldn't take anything by mouth - not even water.
To get through the ordeal look for the victories even the really tiny ones.
Getting taste back has been a long process and while I can taste it is completely different. I add sea salt and a Sazon spice to everything - including my coffee.
Water will help the sputum but the biggest difference for me was lymph node massage and head wrap while sleeping. If you haven't had this PT yet talk to your doctor. After getting off the tube, the massage and head gear gave me the beginnings of a feeling of normalcy.
Hope this info helps.