It has been 17 days since my last rad treatment and 12 days since my last chemo. There is not much news to share as little has changed in post treatment. I guess when you add up all of the small changes you could make a case for overall significant change. From my perspective no further damage to my body is significant change. Some of the small changes are decrease in number of blisters on my tongue and in my mouth, a decrease in redness on my face from radiation, 85% of the Erbitux induced rash is gone, I can take longer showers in much warmer water, I can really brush my teeth for the time in along time without further aggravating my mouth, I am up almost all day without having to take the fatigue naps and the list goes on.

I am still taking all nutrition by PEG. My mouth is just too sore to entertain eating orally although my appetite and desire would beg to differ. Water and milkshakes go down the throat and I am exercising the swallowing mechanisms. Jevity 1.5 is the dietary main course and supplemented with Naked Protein Zone smoothies (420 cal and 30 gm. of protein) and Naked Green Machine drinks for fruit and vegetables. Recently we added baby food diluted with carrot juice and use the tube. My favorite is chicken with mixed vegetables diluted with carrot juice. Yum! Weight is stable and caloric intake is 2800. H2O is 80 oz. per day and coffee is 16oz.

My aggravations beside sores in mouth is the mucous - I spend multiple times of spitting during the night which is the thickest and gag you type. During the day the mucous is much thinner but plentiful. Also the inability to taste - I am waiting patiently for this to return and feel it is holding back my progress but I am learning patience in expectations. Final aggravation is dependency on Oxycodon to survive daily life. A necessary evil and will pass with time. Met with Doctor Gillison last Wednesday and she is pleased with progress. She mentioned that should have been my toughest week and said look how good you are doing. I am thankful and learning patience and know that no 2 patients are alike.

James,

great report, seems like recovery is going smoothly for you all things considered. just keep counting off the weeks, things do get better. As far as the narcos go, try to cut back 50% then wait several days. Of course, if pain persists return back up to previous dosage. Keep doing this each week and you will find your need becomes less over time, let your body guide you, that is the only way and just make sure to slowly taper the dosage. don

James,

I'd say you're doing well!

Re the thick stuff, it usually lasts a couple of weeks and when it stops the dry mouth usually kicks in high gear.

Re the taste returning, do be patient as this and the dry mouth can take every bit of 2 years to improve to where they will improve and it usually is not 100% of your pre Tx. I really see any improvement until my 4th month; then more in the 5th month; no more until my biggest improvement in the 14th month and the last bit at 24 months. I guesstimate I'm back to 90% of what I was but since you can't remember what you were like it's hard to compare.

At least the worst is over and you're out of that tunnel. Remember most of us had bad days mixed in with the good ones until eventually the bad ones disappear so as you said BE PATIENT.

I would 2nd what David said, it takes time, and seems like you are doing quite well. I'm 3.9 years from my first chemo, other treatments, and still recovering. I just do with what I have, which is plenty compared to some, and just happy to be walking. Good luck with your ongoing recovery.

James,

We are on similar paths. I am 24 days post radiation and 20 post chemo. I am experiencing similar issues. Mucus has not been so bad in the last week but throat still is what I would say annoying (no major pain, but a constant dryness). Small sores in the mouth seem to come and go. Desire for taste to return is strong and a major issue. Between that and the annoying throat eating is just not appealing. 6 cans of Jevity is basically my diet.

Jasper

James, congrats on getting through a tough treatment. I'd say you're doing pretty well considering how brutal this stuff can be. The previous posters all have great advice. I personally stayed on liquids for a good 6 months after rads, and my full taste didn't return for much longer - easily a year or more. As my fellow David says, patience is the key!

Keep us posted. We're all here to help.

James, sounds like you are doing pretty good with your recovery. Congrats!!! The recovery phase can be a very long road full of ups and downs. Seems like it can never happen fast enough and just when you think you are doing really good a setback happens and you have a couple bad days.

For at least the next year, keep up the good work with the nutrition and hydration. That really does make a huge difference.

Best wishes with your continued recovery.

Has anyone heard of laser to the tongue to remove ulcers? I had the procedure by chance on Monday PM and have one more treatment tomorrow. I was in for a follow up and the head nurse brought the staff dentist in to look at ulcers on the sides of my tongue. The procedure cleans the bacteria and sort of cauterizes the sore. It really felt much better post treatment and I am looking forward to the follow up laser tomorrow. This validated the soreness in my mouth preventing me from eating. Dentist said no wonder. I will keep you posted.

Sounds great! What a wonderful thing to have a fairly quick fix to one of the side effects from all this. Don't you wish there were more!
Good luck.

Jasper and James- congrats... patience and time is all you need at this point.