Greetings.

My name it Tim and I am 6 months post tx for Base of Tongue SCC HPV16+ with one lymph node involved. I was stage III. I had no surgery or platinum based chemo, only Erbitux and Radiation for my treatments. (NOTE: I was one of a few to have a severe, but rare reaction to Erbitux in the form of a "horrible" acne type rash that covered me with large white and sore pimples almost every square centimeter on my body from the top of my head to my lower back. My oncologist said I was one of the worst he had seen with regards to Erbitux). I began tx Nov 2011 and finished tx January 2012.

It was suggested I have a feeding tube placed in my stomach before tx began. I followed their suggestion and I am GLAD I did. I lost a total of 70lbs in treatment, mostly towards the end. My feeding tube was placed in Nov 2011 and removed in May 2012. I have now lost a total of 85lbs (I was a large man going into my treatments). If anyone asks my opinion, the feeding tube in the stomach is an insurance policy and I personally suggest getting one in case needed. Of coure, try very hard to not use it by swallowing all through tx and do your mouth, swallowing and neck exercises faithfully, this will aid in recovery. Nourishment is healing. You must eat no matter how it is done. Hydration is critical too. You would be surprised how fast you can become depleted during radiation. Your body is BURNING through calories at a massive rate from the radiation.

After radiation was the worst for me. I was in pain and slept the entire first month after radiation. I was taking 6 Narco a day and wore two Fentynal Patches (25mcg and a 12mcg). I consider myself blessed, many wear highter dosage patches than I did.

Do not feel you are behind the class in your recovery if you take months to feel better. I did not feel much better the 2nd or even 3rd month after tx. The mucous was horrible. I felt I could not breath due to the mucous, choked on it all the time and of course I just could not eat via mouth. (I share this only to share what could be, not to be negative. Knowledge is power and the bottom line is it will get better though a hundred times you may say to yourself "I can't make it another day". You will and you will be glad you did). Every "body" is different. Some heal faster than others, but almost all heal. Always share your pains, concerns or symptoms with your ENTIRE care team. They will guide you and help you.

My first follow up PET/CT scan was on May 7. I had my scan and received my results the same day (don't I have a wonderful Oncologist). My scan came back with very good results, showing no cancer in my lymph node or base of tongue, only showing a slight uptick in heat on my vocal cords to which the radiologist and oncologist attributed to radiation treatments.

The same day as my scan I set an appt to see my ENT who was able to do a scope / finger exam and also read my scan results from that morning. My ENT also agreed with the radiologist and my Oncologist that all looked well.

June 6th I had two separate appts with my ENT and Oncologist. Both performed a scope exam / finger exam and all looked well they said.

As of this post I have been off all pain medicine for over 1 month and I do feel good. I still get tired, have sore shoulders and some numbness in my face due to radiation. I also get a tingling / numbness feeling down my back and legs when I touch my chin to my neck, common side affect. I do battle with thrush as well. Three times since last radiation. For some odd reason my hips ache quite badly when I go to stand up after sitting, this may be due to the dramatic weight loss I experienced, just my opinion.

You will find your mind can go into overdrive with every new pain, ache or symptom. Always share them with your healthcare provider team, but remember to "stay calm and carry on" ...life is much sweeter since my cancer dx and I try very hard to enjoy my time, family and each day.

I am back full time employed now (my employer held my job as I took a leave of abscence). I came back to work full time around 2 months after my last tx, but I was not fully able to do like I used too until just the last 4-6 weeks. Again, I still get fatigued and tired often, I just rest when I need to and do what I can to eat right, take vitamins and exercise (the exercise I do need to get better at).

I am happy to share my experience, talk to, pm or do anything I can to help anyone who has to take the same path as I.

My family, faith (prayer) and five children gave me the incentive to fight.

Best,

Tim