Hi Andrew,
Just FYI since you are in the city, there will be a small bit on OC on Fox 5 on February 21st at 10pm. Kev and I participated in it, but sadly won't see it because it is only NYC and surrounding areas.
Kathy

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.

Andrew,

Glad things are going well for you, although slower than I am sure you want but at least there is solid progress toward full health. don

Congrats on finishing your treatments, Andrew! Im sure you are very happy to have this whole thing over with. Keep up the good nutrition and hydration to help you recover. Try adding some high protein whey powder to speed heeling.

Hang in there, recovery seems to take forever but it sound to me like you are on the right path.

So glad your done treatment !!!! Congrats on getting through it - especially with the complications. I found and still find that food in its natural form tastes best. I don't have anything sugar related really or food with a little sugar in them, unless its a fruit etc... Anything processed tastes crappy!

I had my PET scan follow up appt today and was told that it all came back clear with nothing lit up at all. NED!

The next decision I have to make is if I should have the "nodulectomy" surgery on the area of the cancerous lymph node. It is part of the clinical trial I am in with the goal to ensure there is no cancer remaining in the lymph area post reduced dose radiation. The surgical oncologist told me he sees no reason to do it, but will consult with the RO and MO. It is the RO's clinical trial.

I am so happy to hear this, especially since my disease was almost identical just switch the sides. Swollen lymph node on the right, right tonsil cancer spread to the BOT and 1 lymph node on the right. I had surgery before tx but that is because they were still trying to figure out what the swelling was on the right side, turns out it was cancer. I hope to get the great news you just received on my follow up PET August 1st.

NED! Great news. On the salvage surgery, I would ask in depth what the potential physical side effects are by the neck dissection. There are those here who can speak to it more specifically but how much are you willing to endure vs the added benefit? don

Awesome

Great news Andrew.
Re the lymph node - Kris had a necrotic node removed 5 months post rads and chemo. They did a level 2 - 4 dissection.
I wonder if this contributed to our " good news" when 8 months later he needed salvage surgery for a recurrence. At this time he had a bilateral radical neck dissection too . The team were astonished that he had no evidence of disease in any lymph nodes.
Just a thought.
Tammy