I had imagined that my husband Dan and I would be in VA today for the walk, however when the time came Dan wasn't up to the trip. I apologize for not getting in touch with Danny Boy advising of this earlier, but.....

Dan is now 5 weeks out from treatment. He is now getting tiny ulcers inside his mouth and some sore areas. Not thrush for sure, as he had this at the beginning of radiation. He is pretty much off his pain meds, so that could explan some of what he is feeling, but on the other hand, I've been routinely looking closely inside his mouth and these are a new development. Has anyone else experienced this problem? Any idea on the cause?

Tks,
Michelle G.

Hi Michelle,
Mouth ulcers are very common during and after treatment. In my case, I had numerous white spots on my tongue and over the mouth. I used to look at my own mouth with a small torch every day to see if there was improvement. Sometimes one spot disappeared then another showed up. These I thought were ulcers that made me feel the pain when eating. They took time for healing and I still have sore at both sides of the tongue, which made me very sensitive to even the slightest spice put in the food. Other ulcers have long gone away. That should be the side effect of radiation.

Karen

Five weeks out ?!?!? His immune system is still too compromised and he is far too weak to even think about going out in public places.

I had thrush problems for several months and the blisters on my tongue and the radiation burns in the back of my throat took months to heal as well, exacerbated by the thrush. He sounds about normal for 5 weeks post Tx. Might be a little soon to wean off the pain meds.

Hi Karen,
I had to mention that "small torch" I hope means "small flashlight". In the US a torch is a device with an open flame, for welding or getting things really hot. I bet we can blame the Brits for that one!

Hi Michelle,
My mouth reacted alot like Karen's did and reading her posts really helped me understand it and relax about it after radiation. I will be two years "out" from radiation on July 10th and I still get sores on my tongue. Some will stay for a couple of months but they always look the same and they always go away, slow but sure. They are also painful and pop up in different places each time.
At five weeks out my mouth was still a mess but I was feeling better. I was out in public every day by then BUT I didn't have chemo and I think that compromises the immune system more....am I right Gary??
I wish you could have made it today but we all understand.............we have next year to look forward to.
Minnie

You're right Minnie - chemo does a number on the immune system - It also enhances the mouth sores. It takes 120 days for the body to replace the red cells that got zapped passing through the carotids during radiation.

I haven't had problems with mouth sores now for almost a year.

Colds or flu with a compromised immune system can easily end up as pneumonia.

Hi Mark, thank you for telling me the meaning of torch in American English. In the British English dictionary, a torch is a tool where you put batteries in so that it gives out light. I have bought a dictionary of American English some time ago and I think I need to refer to it more often when I post here. Thanks again.

Karen

Thanks to all for this info. I read it to Dan and believe that your thoughts have eased his mind considerably......they sure have eased mine!

Now I have another question. He is weaning off the PEG and beginning to eat by mouth. His sense of taste is pretty good. He can swallow liquids w/o a problem, but other foods cause some difficulty. He still complains of the food "being stuck". Can anyone shed any light on this for me? I would say at this point, this is one of his main concerns.....can someone tell me if this will improve? If so, how long does it usually take?

Thanks to all,
Michelle G.

Hey Karen
Us Brits knew exactly what you meant ...lol
These Americans have done a number on our lovely English Language just don`t you pay any attention to that Mark...kidding you on the way he is !! :p

Marica

Gary: speaking of weaning off pain meds, I'm hoping you can share your thought here also......Dan was on HEAVY narcotics for the 10 mths prior to his 12/04 diagnosis, as he had been misdiagnosed that entire time.....doctors kept adding to the pain meds and missing the real problem! After diagnosis he was taken off oxycontin and given duragesic patches and oxocodone liquid for breakthru pain. He stopped the liquid some wks back and the doctors decreased the patches to the lowest dose available. They gave him ax rx for methadone in case he had pain. He has NO pain, but feels lousy from the withdrawals......very down, irritable, and some nausea. The pharmacy has the methadone on order, I gave him a very low dose of the liquid again today and it made him feel better.....has anyone else experienced this kind of thing? How long did it take to get off all the pain meds? The doctor said to begin with 5mls of methadone (or the oxy liquid) and if no pain, decrease by one ml per day.....I'm assuming that I can do the same with the oxy......does this all sound right?

Thanks,
Michelle G.