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augustus's Message Board Messages

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Aquaphor is good. I also was prescribed Prutect, but ended up using the aquaphor the most. If your team is not giving you a lot of this information, get them involved. We went in each meeting with a notebook of questions and took notes from them to refer to later. They also provided useful handouts. 

If I have a reoccurrance, I would try the immonotherapy if they are reasonably confident about its success. But for the first time , I couldn't say. (I wish there was a viable option to avoid the radiation too. ) I had a lot of difficulty with chemo and was given several types because of reactions. Radiation was even tougher. But the most imporatant reaction, killing the cancer, was achieved too. The radiologist takes most of the credit for that, but my oncologist thinks the same thing about her program, I am sure. I felt my doctors at MD Anderson gave me straight answers. If you trust your doctors, following their lead is usually the best option. If you think they are needing guinea pigs, then go with the standard treatment. I am 3.5 years out but they found a spot in my ear canal that is "suspicous" and probably going to be cut out and have a biopsy on. I hope it is scar tissue from the radiation. If immunotherapy somehow helped with preventing something like this cropping up, that would increase my likelihood to use it, of course. 

I occasionaly get a mouth sore or two, usually on the tongue. I use a good mouth wash and it goes away soon. I hope that is what you are experiencing. 

RE: Eating after radiation

by augustus - April 05, 2018

You've come a long way, Princess. I was in a similar spot where you are at 6 months. It gets a little better with each passing month. I am 3.5 years out and last night I had one of my best meals post treatment. Semi-spicy Mexican food that I would not have had a chance of eating 3 years ago.  My wife still cooks a lot of casseroles, but it is getting better. I have found that a little spicy foods seems to stimulate what salivary glands that are still lurking back there. I used to avoid restaraunts due to how slow I would eat and the worry about choking. I found I could still breathe through my nose and to slow down with smaller bites. Today, I seldom have food get "stuck" where I almost panic. It has gotten a whole lot better. 

I am a little over 3 years out. It is a lot better, but still not where it was before. Spicy foods, while a lot hotter than they were previously,  help stimulate my taste buds. 

RE: eating

by augustus - January 13, 2018

I developed a food aversion. Mine was purely psychological. It is called The Garcia effect. I read up on it and eventually got over it.  The smell of food and thought of eating made me nauseous like the chemo and radiation treatments did. I knew it was in my mind which made it a little frustrating. But like the claustraphobia with the mask, it's just another bump to get over.  The sensitivity to things that burn has greatly improved. In fact I am eating spicy foods more now just for the effect it has on my few working salivary glands. 

Congratulations! I am 3 years out and expect it to be normal from now on, but that first year is a very important milestone! 

I was treated at MD Anderson and would recommend a second opinion there, Couldn't hurt. It is an amazing place. 

Of all the obstacles, mucus is as big as they get. I couldn't go anywhere without a small trashcan and a box of Kleenex. Or two.  I used Mucinex some, but it only helped a little. My wife also put a dehumidifier in my room. She stayed upstairs of the house we were at and I slept downstairs in a single bed. I was too weak for the stairs and plus we thought she might get more sleep. Probably didn't, though. I was told by my team to get a wedge pillow and it helped some. I learned to sleep on my back with my head elevated. After treatment when I moved back home, I often slept in my recliner, as it would keep me elevated easier. But I never found much to combat the mucus. Just a few things to ease it some. It took months to go away.  It also probably caused as much nausea as the chemo and radiation. Mayo is a great hospital, as was MD Anderson, where we went. They have a great team at both that will have more "tricks" to help too. I ended up in ICU at the end of my treatment, but today, I am doing very well. Saliva is weak, as are my taste buds, but overall, not much to complain about. It was in ways the best experience of my life. I love my wife of 35 years even more now and we appreciate every day. 

RE: Treatment starts today

by augustus - August 16, 2017

Yay! Each day is the most important. That is the main thing I learned when I went through it 3 years ago. Mine was also stage 4 and I am working and doing well today. You've got this.

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