Jasper thanks for jumping in. It is great to have validation that the way we feel is not abnormal. Please keep me posted on changes and I will do same. Also see post by rosymonroe. We can both learn from her since she is a few weeks ahead of you. She can keep us in check. And thanks yo everyone for the encouragement. Your comments and advice are always welcome.

James,

I have been following roseymonroes posts as well as yours. I am looking forward to that hamburger and Dr. Pepper moment! Just tried canned peaches....no problem with swallowing, but unbelievably bad taste. Trying to achieve the "eat to live" mentality precribed by the posters, but I am not there yet.

Best of luck to you and will continue to watch and share experiences.

Jasper.

Two years our dr. Pepper still tastes like chemical stew... Ugh... I never drink pop.. Painful and gross..

Week 3 of post treatment is ending without much fanfare. Again my expectations vs. reality. Thursday I had 2nd laser treatment for ulcers on tongue. I think this is a great tool when available to stimulate healing. The tongue already has pink areas and looks a thousand times better than a few weeks ago. I am getting my taste back. Yesterday I ate a Jello pudding cup and could taste the chocolate and vanilla. Throat is still sore and tongue healing so I am not pushing the food yet. I do find I feel much better with a Naked juice protein smoothie each day and the baby food through the tube. It helps the complexion and overall sense of feeling good. Thought I was into dry mouth for a few days but mucous came back with a vengeance this morning. All in all I am still moving forward.

You are doing so awesome!!!

Week 4 of post treatment was an up and down week. Add to that some inconsistencies, emotional downtime and you have a recipe for an update. Friday I noticed an area on my lower neck and part of shoulder (tumor side) was extremely red and starting to blister. This had never been an issue through treatment or up to this point. Now it is worsening but I am controlling with Eucerin applications. Not sure why now this would surface. Second, tongue ulcer on right side is cleared up and pain free. Left side monster is still sore and aggravating. Had another laser treatment Thursday so I will observe for a few days hoping it heals. If not another treatment scheduled this coming week. On another front I am battling some fears and the usual questions we have all asked ourselves from time to time: Why? Am I ever going to heal? Why am I prisoner to pain meds and PEG tube? I actually had a crying moment with my wife yesterday as she could sense my anger/frustration with this cancer that has dominated our lives for 5 months now. I can appreciate those who have gone through this before me and take time to help others and yet sometimes you can sense the anger for what they had to go through. It just does not seem fair. Last night on the news it was mentioned that 1 in 2 will have cancer at some point in their life. Maybe we go through this so we can help the ever increasing number of people diagnosed with this disease.

At any rate I am progressing. Eating hot cereal everyday. Taste is back and once tongue ulcer pain eases I am raring to charge into the pantry. Weight has gone down another 3 pounds this week making total 13 overall. I am determined to correct that and put weight on with new determination. Also cleared to work from home until I feel good enough to go into office everyday. So you see this week was good, bad and ugly at times. So is this journey.

Hi James,

First off, give yourself a big pat on the back for coming this far! You're doing just fine from what you said. I know how you feel having been there myself just a few short months ago. The days and weeks post treatment are like a bad dream you cannot awaken from. It seems as if you're not making progress.

I assure you that you are! Like you, my neck reddened but did not start peeling and blistering until I was home. I had used Special Care Cream all throughout treatment and continued use through the peel and blister stage helped it heal.

The mouth pain was excruciating for a good month and again, the standard remedies, Magic Mouthwash, baking soda/salt. glutamine rinses helped and yes, pain meds. I'm finally weaning off of them 3 months post treatment having been on narcotics since December of last year.

I was unable to eat from about two weeks before treatment ended until 4 weeks post Tx. I got my PEG two hours after I rang the bell and other than water, took nothing by mouth for 4 weeks. Then, one day, I had one soft scrambled egg and I was off and running on eating. Now, three months out, I can eat most things albeit with lots of water.

It's been said, and hard to see under the circumstances, but progress is measured in weeks and months as opposed to days. I personally still have a long way to go but when I look at it from the big picture, I'm light years ahead of where I was two months ago.

Hang in there James.... it will get better!

Positive thoughts and prayers

"T"

Hi James,

Thanks for the update. Things do get better but for me the biggest adjustment was the time interval grows larger. During treatment, something happens everyday. Once you are post-tx, things start moving much slower in terms of healing.

Days are a useless measure; weeks and months become the new order of measure. Just need to stay the course and be patient. I will be 12 weeks post-tx end of this month and first scan scheduled at that time.

Best to you, Don

Hang in there James. Start of week 7 post treatment is where I turned the corner. Getting the peg out was the best day, expect when the doc yanked it out. Ouch! However, Mentally it was a HUGH leap forward. Watch out for burning tongue. Every time I had it, Thrush followed. I got scipt for nystat concoction. Worked great.

James,

I will try and give you a reference point from someone a week ahead of you -- but as the more experienced folks here will tell us, each of us is different.

You are fortunate to get your taste back so soon. In my opinion, this will help considerably in getting off the PEG. I have very little taste and when it is there it is mostly a hint of what I am trying to eat and VERY difficult to overcome. I am getting down the smoothies (one flavor only) and yogurt. Getting off the cans of food and away from the PEG is a huge concern and I think you will do well once those sores are gone. I am struggling big time with this and pushing myself, but not sure what will replace the calories. I am able to maintain my weight, but down 25 of the 200 I started from so in comparison you seem to be holding your own quite well.

Sounds like the sores are a real problem which I have not had to deal with at all (other than small ones that go away within a day) throughout the treatment. You seem to have a good solution if the laser treatments are working -- so beween that and time, you should have it covered. I am fortunate and did not have to take pain meds throughout the treatment and after (a small amount of Oxy at night to make sure I could sleep), but I assume that is due to your sores as well?? If so, that will pass.

Not sure how your throat is, but my mucous is basically gone, replaced by a dryness in the mouth and throat that is also a major annoyance. I will be posting on a separate thread to get some input on this as it is bad and a hinderance to eating (no saliva, no taste = major impediment to eating),

Crying moments? Ditto. This situation basically sucks and is emotionally draining. Fortunately my wife gets me through it and recently I came through the "tunnel" as Davidcpa says and have more energy and a better attitude, but for a guy that was physically and mentally fit and active, this has been a ton of bricks to carry and I am not sure how others do it with worse symptoms. I could go on with this subject, but suffice it to say you are not alone but I do see some rays of hope as I get a little better and enjoy time with the family.

Sounds overall like you are doing well so keep your chin up....although difficult, I will try to practice that as well.

Jasper