Hi All,
Gordon is 2 months post treatment now. It has been a struggle for him to start eating solid foods, but we were managing moist meat loaf, well cooked vegetables, even some rice and toast. This in spite of the lack of saliva and taste. Also, he's been pretty much pain-free for the last 3 or 4 weeks.
Last week, after having some ice-cream (and pressing it into the roof of his mouth with his tongue to melt it, as he can't really chew it because of the cold), he noticed his throat was a bit sore. His GP said he had an "apthous ulcer" at the back of his throat, but the ENT surgeon (who is really good and very experienced), said he's having a breakdown of the mucosal(?) tissue at the back of his throat and there was the one large ulcer and some smaller ones. (His radiation oncologist refused to see him and the nurse at the clinic told us that the RO said this was "part of the recovery process!) Basically it'll take a week or two to get better and there isn't much you can do to speed it along. He said the ice-cream was not the cause.
So now he's back to 3 milkshakes a day, oatmeal, yogurt etc. and is very, very depressed as it feels like a 6 week setback.
Has anyone else had something like this crop up weeks or months after treatment has ended? Is there really nothing that can be done to heal it faster?
The surgeon said he sees this post-treatment reaction all the time, so it can't be that uncommon.
What to do, if anything?
Thanks, Anne
Hi Anne
Sounds like your husband is doing very well. Be careful feeding him rice, it can be very difficult to eat when a person has dry mouth problems. Ive choked on rice a few times and still cant seem to get it down. Eating post treatment can be a long battle due to the taste and mouth changes. Slowly your husband will improve. It can take up to 2 years to get to his new normal. Most patients have extreeme fatigue and many mouth sores to deal with. Your husband really is very fortunate, must be from having a great caregiver
After effects can pop up any time after treatments are over. There are so many little annoyances that can happen. Since your husband recently finshed his treatments, its not unusual for setbacks to happen. Seems like its constantly 2 steps forward and 1 step back for a long time. After having radiation, it takes longer for patients to heal. A high protein diet with over 2000 calories or more will help him recover better. Protein is necessary for healing and he will burn alot of calories during the healing process.
Your husband really is doing very very well. Some people sail right thru treatments while others struggle. Wishing him a speedy recovery.
Hi, and thanks for the encouragement. The doctors think he's doing well, but unfortunately Gordon doesn't and thinks he's having a major setback (which he is, but it appears to be temporary). With his mental health issues, this is very hard to deal with for both of us. On top of this, he's dealing with some nasty withdrawal symptoms as he's being weaned off the Fentanyl patch.
I think what I was trying to ask, in a very circuitous fashion, was if anyone has experienced an outbreak of ulcers (mucosal breakdown) in the throat weeks or months after treatment has finished.
If you have, is there anything you tried that helped? Apparently these ulcers take a couple of weeks to heal, but we'd like to help it along if possible.
Thanks, Anne
I know cotisone is very efective with mouth ulcers. There are gels like Kenalog but this would not work due to the location of the ulcers. A tablet swished around the mouth could help, it may be worth asking just your gp as it should not hurt anything else. Just a sugestion as I have had them my whole life before cancer.
Tony
I've heard that Cortisone does seem to be helpful. It's just an awkward area to dab it on (right at the back of the throat). The ulcers seem to be clearing up now (just as the surgeon said - one or two weeks) and Gordon's throat feels better. Still, it would have been nice to know that this can happen after treatment so that you are prepared and don't go off the deep end wondering what the heck is going on.
An informed patient is a calmer patient (to say nothing of the caregiver)!
Anne
Anne, sorry to hear of Gordon's troubles. But putting it in perspective, I wasn't able to eat anything solid - even oatmeal - for at least 3 months post rads. So he's ahead of my game at any rate!
My RO was always telling me to gargle with water and baking soda. It seemed counterintuitive to me, figured it would irritate things, but she insisted that it would help. And she's been right about everything so far.
Have you tried viscous lidocaine? It's tough to get it way back there but it might provide some relief. Although, as you write, things are getting better. Mainly I'm sorry to hear that your doctors didn't prepare you for this.
All the best to you both.
David 2
Thanks David. It helps to get some perspective, at least it helps me. If Gordon would read some of the posts here, it might help him too! Three months is a long time to have to get by on liquids and it must have been really tough for you.
I can understand why medical staff don't overburden you with information about treatment before it starts. If we knew then what we know now, I'm not sure we would have got out of the starting gate.
However, post-treatment is another matter. Someone needed to sit down with us and let us know about the various things that might crop up, just so we would have been prepared. Even a handout would have been better than nothing. Mostly, I had to look stuff up on the Internet. I managed to get some help with the lymphodema and what Gordon thought was narrowing of the throat (which turned out to be difficulty swallowing caused by lack of saliva) - at least, someone called us back about those issues. But when the RO refused to see him when his throat got sore last week, that was just too much. We were told to go see the GP, who really is not trained to deal with post-radiation issues. Very inappropriate.
Gordon has used the baking soda solution all the way along, but stopped because the GP told him to. He stopped the MMW too. Both not good ideas. Gordon's surgeon told him to continue with both, so he has picked them up again.
He has used the lidocaine in the past, but only to get the lactulose down. He won't use it now but at least he's getting better and is thinking about trying solid food again.
Our biggest issue right now is getting rid of the narcotics. The withdrawal is tough and anyone who says you won't get addicted to them if they are used for pain is just full of you-know-what. And no-one prepared us for that either. I had to look up withdrawal symptoms for oxycodone on the Internet to figure out what was going on with him.
It just seems to never end! Anne
Your last sentence says it all, Anne... but of course the key word there is 'seems', because it will all end one day soon. I can't speak personally about difficulties coming down from painkillers because I had none. And I took a lot of them, too.
As far as my own problems, thanks for the kind words but what I've gone through is nothing compared to some of the people here. They're the ones with real courage.
Glad things are improving!
D.
David2, did you take oxycodone? Seems to me I read somewhere that you did but it might have been someone else (perhaps one of the other Davids?) If it was you, how did you taper off? I wouldn't think this is a drug you can just stop "cold turkey". Thanks, Anne
Anne, we Davids just seem to multiply, don't we!
Anywho the answer is yes, both as Percocet and then straight Oxy. I was eating them at a rate of hmm... 15 mgs (as 3x5) maybe 3-4 times a day. This went on for at least 6 weeks, maybe longer. I also had a Fentanyl patch - lowest dose I believe - for the last 2 weeks of RT.
I personally did not experience any withdrawal when I stopped this stuff, although I did take that 15 mgs of Oxy from time to time for quite awhile thereafter when I felt I needed it. I don't consider this any kind of classic tapering per se, as it was just a per-need thing. I do know that many people have problems however. Maybe someone with better knowledge will weigh in.
D (of many)
It's not advisable to stop any prescription pain pill "cold turkey" bt most posters on OCF did not have any major issues in reducing their dosage as the pain subsides. The key is to take it slow.
I've been on both sides of opiate use : done for recreation when truly normal and for pain relief for the new normal. I don't think you husband is "addicted" in any way, he just needs a schedule to reduce dosage. Doctors should be more explicit in my opinion in helping quit taking pain pills with instructions on splitting pills when possible as a wind down after getting smaller dosages.
Mouth ulcers were indeed terrible and seltzer water helped me even though it burned.
Charm
Yes, there do seem to be quite a few of you.
15 mg. of Oxy 3-4X/day doesn't sound like much. Gordon was on 40 mg every 4 hrs. during the day and 60 mg. every 4 yrs. at night, and this was on the advice of the pain management Dr. The highest daily total dose he took was 300 mg. He's now down to 5 mg. 4X/day and will stay there until he's off the patch (now at 12 mcg. - it comes off tomorrow night). I think he must have had either a very low tolerance for pain or an incredibly high amount of pain. It's all so subjective.
I'm glad to hear you had an easier time of it, because the withdrawal is just awful.
Anne
I have commented often over the years about the abundance of Davids on this site. I doubt that they will add "The Name David" to list of known OC causes as they would have to do a 50 year study but if you know anyone about to name their soon to be born son advise them they may be a future risk of OC. JMO