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.

Yes, well, withdrawal comes with the territory when going off of narcotics. I worked out a phase out plan (that took about 2 weeks)with my oncologist and only mildly was uncomfortable for about 3 days. In AA they say "this too shall pass". I was on Fentanyl patchs, vicodin and morphine at the end.

According to the American Heritage Dictionary of the English Language, definition of Torch, 1B is a flashlight. Save your money Karen. Since you are a year ahead of me Karen, you will always be my torch bearer.

Gary: perhaps some more specific info on the plan your doc recommended? I just don't feel the "plan" we are using is working as well as it could. I understand that "this too shall pass" theory, but as I'm sure you remember, I doubt that it is a comforting thought when you are going thru it....but then, I'm the caretaker and not the patient! Thanks for all the info Gary.

MG

Michelle,
With him only being 5 weeks out I'm giving him kudo's for eating at all. The food will stick for awhile due to the dryness and the damage to the throat. I still have times that food will stick although I eat pretty well. Give him 6 months and he will be SO HAPPY with how much better it will be. Patience is the key or he will get discouraged.
Minnie

Minnie makes a very good point. I choked on everything for quite a while. If salivary function is to return, it can take 18 months or longer.

My specific withdrawal plan was to reduce the Duragesic patches from 75 to 25 mg, in the normal 72 hour timeframes then to go from 6 vicodin a day to nothing omitting one pill per day. So it was a total 12 day plan. I had the sweats and felt pretty shaky and irritable but it was only uncomfortable for about 3 days. A MAJOR benefit is the almost immediate elimination of all of the constipation issues.

Contraindications for an inadequate narcotics withdrawal plan can include seizures and convulsions in the worst case scenario. Anti-anxiety meds, such as Zanax are also addictive.

Dan is no longer using any anti-anxiety meds. They did not give him Xanax, but Ativan previously. It seems that the oxycodone liquid (1mg/1ml) giving 5ml's is working okay now. His on-going withdrawal symptoms are much the same as what you are mentioning here. We will titrate that much in the same way you did w/the Vicodin and hope for the best.

Oh Gary, I almost forgot, you had mentioned earlier that being so short term post tx that with Dan's resistance still being low, he should perhaps remain out the the public longer.....a valid point, but Dan has returned to work now (exec office position very similar to yours), and the emotional benefit, plus his good labs, just outweighed the risk, swaying both him and the medical team (I was the one that was a hard sell on that one).....so we'll keep our fingers crossed as we move forward. Thanks, and have a great evening!

Hi Karen,
Us Aussie's knew what you meant too, about the torch. I think it's those Americans who have things mixed up.....after all, they call a 'bum' a 'fanny'! eeeek. Taking the mickey out of you Mark!!...hope you know what that means! (chuckle)

Dan is no longer using any anti-anxiety meds. They did not give him Xanax, but Ativan previously. It seems that the oxycodone liquid (1mg/1ml) giving 5ml's is working okay now. His on-going withdrawal symptoms are much the same as what you are mentioning here. We will titrate that much in the same way you did w/the Vicodin and hope for the best.

Oh Gary, I almost forgot, you had mentioned earlier that being so short term post tx that with Dan's resistance still being low, he should perhaps remain out the the public longer.....a valid point, but Dan has returned to work now (exec office position very similar to yours), and the emotional benefit, plus his good labs, just outweighed the risk, swaying both him and the medical team (I was the one that was a hard sell on that one).....so we'll keep our fingers crossed as we move forward. Thanks, and have a great evening!