My journey so far

I was diagnosed with Stage IV Moderate differentiated invasive squamous cell carinoma of left base of tongue, left glossopharyngeal sulcus and left palattine tonsilla area on 16 Feb 16. I also had a swollen gland on the right side of my neck at the point of the jaw. This was surgically removed and biopsied as a Warthins Tumor - benign. My radiation oncologist required I have a dental exam. My teeth were in poor condition and the dentist said he would need at least six weeks to do all the work required. He became part of my team and after a conference of the team it was the recommendation that I have all my teeth removed. Which I did. I also opted to have a PEG tube inserted prior to commencing treatment. I started this journey weighing 174 lbs, I lost weight after the teeth extraction and weighed 168 lbs when I commenced treatment on 16 Mar 16. The treatment plan was aggressive - 3 Chemo with Cisplatin on Days 1, 21 42. 64 hyperfrationated Radiation 2 times a day Mon-Fri. I was hospitalised three times during my treatment period, once for aspirated pneumonia, once with severe sepsis (3 days ICU) caused by a CDiff infection which I picked up at the hospital and which was helped along by the antibiotics for the surgery and the pneumonia (this hospitalisation caused me to miss two days radiation which I made up at the end). The third was for acute tracheobroncitis attributable to major aspiration issue from the mucositis. My experience with the chemo side effects was the fatigue and nausea the latter of which was treated with zofran and compazine. I did pretty well with the chemo. The radiation burned the heck of my skin and the mucositis was overwhelming at times.

I finished all my treatments on 6 May 16. My weight at the end of treatment was 150 lbs. If not for the PEG tube, I believe I would have been in hospital more often than not and probably still in there now. My recovery is progressing. I have had a dose of thrush which we dealt with by mouth wash and then an 8  day course of tablets. All of the skin burns are gone, I still don't have hair on back of neck/head. My sense of taste has returned such that I can taste a lot of things - salt in my bicarb mouth rinse, the ?mylanta in the magic mouth wash, soda tastes of those I have tried, chocolate. I am still unable to eat because my mouth and throat seem to be healing in different areas in different stages. Two weeks ago I was convinced I was going to be eating within a week then over the weekend the top and sides of my tounge started burning, the roof of mouth and soft palate the same and the top of throat also. That has been case ever since. I am using the mouth wash, the bicarb mouth rinse and the mucostitis in my mouth is much reduced but the gunk hanging in the back of my throat I can't seem to deal with no matter what I do. I am still feeding exclusively by the PEG - 2850 cal/day. My current weight is 160 lbs.

On 18 May 16 my radiation oncologist scoped me and showed me side by side pictures of the site of the tumor from that day and his intial scope of me back in March. We could not see the mass and although the area looked a bit inflamed and swollen he was very happy with result and obviously so was I.

I have a review with my team on 11 July 16. I am hoping that I will be eating by then and will have put on sufficient weight that the PEG can come out. I will come back and update this thread when I have had the visit.

It has at times been a rough road and my wife has been with me every step of the way. My team have been telling me that I have been remarkable patient and they are very happy with me. If my road has been exemplary then I can only shudder at the thought of how rough it has been for others.

I won't be getting dentures I guess for another couple of months so real eating is not on my horizon yet but what I wouldn't give for a big plate of scrambled eggs or mashed spud and gravy. I feel like I have been hungry for 4 months straight.

Just one question (I know it is different for everybody) but has anyone else had the burning thing set in and if so, how long did it last?