Well, I made it through treatment in mostly one piece. I'm a bit over 5 weeks out now.

I elected for the clinical trial that I discussed in another one of my posts and am hoping for the best when I'm scanned in a few months. Post scan, I will have a small surgery to remove any remaining scar tissue/lymph tissue in the cancerous area (there is a small amount of what appears to be scar tissue) and check for any remaining cancer.

I'd like to share a few choice bits of my experience (not exhaustive or complete) in the hope that it may help someone else. One of my side effects had only been seen a couple times by my medical oncologist and nutritionist in their history, so I figured it would be best to share. If this would be better in a different area of the forum (currently in treatment?) feel free to move it.

Fortunately, I didn't have severe constant nausea throughout treatment but the chemo and radiation got me in my own way. My stomach and digestive system seemed to shut down starting with the 1st batch of chemo along with the onset of anti-nausea meds. We quickly changed my anti-nausea meds (from ondansetron to adivan/Lorazepam, metaclopromide, and others) but that didn't help in my case. My stomach lost the ability to empty its liquid and solid content at a normal speed. I lost 10lbs the 1st week. The digestive shutdown was accompanied by an overwhelming feeling of fullness and nausea if I continued to fill my stomach, either with food or liquids. There was constant burping and hiccups, which didn't help the situation. We put me on a strong batch of laxatives, digestive movers, etc but it didn't help much with the feeling of fullness. Nutrition and hydration were extremely difficult for me. The times I threw up were not due to nausea because of food or taste, but rather because I filled my stomach to the brim. I somehow made it through without a PEG. I was a healthy weight pre treatment and am an athletic/fit guy but lost a ton of weight. From my starting weight of 182 (pre-diagnosis) and treatment starting weight of 188 I now weigh 138. I've lost an absurd amount of muscle mass mostly in the arms and legs (~4 inches in circumference on my thighs). In the last week or so, I've been able to take in 2500-3000 cals per day and the weight loss has stabilized.

I became very friendly with the radiation oncology nursing department as I went in for hydration 3x per week in my prime. It really helped with the above issues (ensuring I at least was hydrated properly). I was hesitant to go in at first as it takes so long, but it really helped in my case, and I'd recommend to anyone who isn't getting enough liquids in. I spent a lot of time napping which I think helped with my recovery as well. I'd also recommend getting your mouth sprayed with saline solution if you are in the nursing department for hydration or before/after radiation.

We found out that I am allergic to fentanyl, after a weekend hospital stay because of repeated vomiting in a short period after starting the minimum dose of fentanyl. The nausea and vomiting resolved itself after removing the patch and I was switched to oxycontin and oxycodone.

I found Guaifenesin syrup and pills helpful with the excessive mucus.

I'll come back and post anything else that comes up that I forgot.

Oh and I'll end the post on a few positive notes for all those in treatment currently.
- I am back to eating some foods (soggy cereals, pasta with cheese sauce, some meats). I eat 1-2 meals a day of real food, with 2 scandi shakes for the balance of the calories for the day.
- My mouth has healed enough that this week we took me off my painkillers. It still hurts to eat, but I think its better than the side effects of the painkillers.
- Some taste has come back. I can taste salty to some degree and some sweets. Its seems to be quite fickle and is no where near 100%. For example, I cant taste the sweet in syrup, but can taste sweet in apple juice to some degree.
- Its been very difficult to stay positive with the small incremental changes that happen but it does seem to get better. It is just very slow and hard to grasp on a day to day basis. I have to keep reminding myself where I was at 5 weeks ago - not really able to talk, in pain, unable to eat enough, throwing up time to time, and feeling terrible. It will get better!

Thanks to everyone on this forum. All of the helpful posts really helped me get through treatment.