Hope someone can help, I am 3 months out of Tx and still have a very sore tongue, sore raw throat and swollen mouth mucosa, which is making eating very difficult.

Any ideas on how long this will take to get better. I really want to get rid of the PEG now. I dont have thrush and am drinking 2 litres of water a day.

Regards
Lynn

Lynn:

Im in the same situation as you, and it really really stinks!!!!

Unfortunately, it takes a long time to heal up enough to eat properly. There are several posts similar to yours about this same subject. Seems the general consensus is that it can take up to 18 months to get back to normal or near normal. Of course everybody is different, but we all must have patience and give our bodies time to heal.

Trust me, I dont like the PEG any more than you do. I have struggled with it the whole time.

Lynn,

When is the last time you saw your RO and what did he/she say? Of all the posts I have read since joining this site I don't remember someone having your problems, excluding thrush or infection, 3 months post Tx.

I am now 7 months post TX and still have my peg tube. I don't depend on it as much as I used to, but I'm still not able to eat enough to maintain proper nutrition so I will put up with it until I can do so. Yes, it is a nuisance, but I'd rather be safe than sorry. My esophagus has been narrowed from the radiation effects so I am having difficulties with learning to eat again. And, as Christine said, it does takes a reeeally long time to heal from this kind of TX. I am a lot better now than I was at your stage. I remember my mouth, tongue and cheeks being swollen and sore as well. They are much, much better now so just hang in there the best you can. Everyone has their peg tube yanked out at different times. It just depends on each individual's healing progress. Best of luck to you!

[quote=davidcpa]Lynn,

When is the last time you saw your RO and what did he/she say? Of all the posts I have read since joining this site I don't remember someone having your problems, excluding thrush or infection, 3 months post Tx. [/quote]

David
Last appointment was 6th December, I am seeing the team again on 31st Jan. I am no further forward in what I can eat than I was at my last appointment. Despite the fact that I really try to eat. I now force myself to take 3/4 of my Protien and Energy drinks by mouth, but the resulting discomfort means increased pain medication being needed.

Hi Lynn,
My mom has been having a lot of the same issues as you. She just met - finally- with a pain management team last week. The one thing that they did prescribe was valtrex, she took 1,000mg in one day and she is beginning to see a little improvement. She has found that ensure plus helps coat her tongue more than any of the other drinks, and eases her hunger pangs. She hasn't had her ngtube since 10/17/07. She is holding her weight, not quite sure how. The one thing that the team suggested was that her tongue may not be healing properly due to possible malnutrition. She can't handle drinking water. She tolerates warm tea, cold Gold Peak lemon flavored tea made by coca-cola.
I am all over the place trying to get my thoughts out-sorry. Just seems so much happens all at once, each onc has their own theory...
Overall, she seems to be doing better, just not fast enough for her.
For the mucous she has an rx of Tussionex, though the nurse practioner said plain robitussin would work the same-she tried it and cried out in pain, burned her tongue. She also uses the sodium chloride rinses, her lidocaine viscous,
She ahs also complained that her throat feels very constricted at times.
We need some warmer weather...the cold temps are brutal on her mouth.

Lynn, Not trying to be a contrarian but I have been here longer than David and I have seen several people 3 months out of treatment with your problems. You shouldn't feel like there's somehting wrong with you. People react differently to radiation--some much more strongly than others--David had an easy time of it but I'm getting tired of the implication that anyone that takes longer to recover must have some special kind of problem.
Nelie

Hi, everyone (several seem to have similar concerns):

I was my husband's caregiver for his induction chemo followed by radiation/chemo. I was on top of EVERYTHING, think I did everyting humanly possible to aid him as he went through treatment, and he was amazing, committed, and really compliant with all he was told he needed to do. He swallowed (albeit just water during a couple of weeks) throughout treatment, kept his weight normal, used recommended lotions for radiation effects, used meds for mouth sores and thrush, rinses, etc. Yet he has had some very, very significant side effects (some sound like Nelie's as he has scar tissue in his throat and things like epiglotis may have shrunk, shifted; he has neuropathy in toes and fingers; several loose teeth despite pre-treatment and during treatment care; had severe anemia which is now resolved; etc.). So I agree that there are tremendous individual differences to treatment based on the individual, the specific treatment, etc.

What I have concluded is that "aftercare" to ensure that the patient is on the track to recover the best level of functioning that he/she can (physically, emotionally,relationally etc.) is sadly lacking. It really falls outside of what the med oncologist and radiation oncologist and even the ENT oncologist do. We have often had to really bring it to the MDs attention that his problems may be more than the norm and that they are affecting his quality of life. It took almost two months to begin infusions of iron compound for the 6 weeks of anemia treatment; we were told that nothing could be done for neuropathy because I think they thought we were asking for a cure rather than coping strategies to help balance, using computer etc (he got a script for physical and occupational therapy and had a phenomenal evaluation today and will now have 50 sessions covered by insurance and they said they can really help him even recover function); it took over two months to get them to realize he really needed a swallowing test (and he has a significant, finger-shaped piece of scar tissue that might cause more harm to remove by creating more scar tissue- no wonder he couldn't swallow that well and choked- we all would with a finger-shaped thing in our throat); the scar tissue obstruction seems to cause acid reflux which could make your mouth sore and certainly affects health of your teeth; and we just recently got referred to a dentist who specializes in radiation effects on teeth and supporting bone.

So- this is my long way of saying everyone is different, most peoples' treatments were individualized to them, and that you really really have to press sometimes to get issues addressed as you are recovering if they affect your quality of life and don't seem to be progressing. Request a swallowing test if you have trouble swallowing and have really been trying; request physical or occupational therapy, request psychological treatment; request labs if your energy is low as you may have anemia or thyroid problems. I have been pretty assertive and I think it will make a huge difference not only in my husband's quality of life but in mine as well because I really, really care about him and us as a couple. He has not been able to be his own advocate as much as he could have in the past because he really got "zapped" by the treatment as the physical therapist told him today. There were many times i thought he wasn't trying hard enough to eat various things as i was comparing it to others on this Board. I really felt humbled to realize how brave he was trying to force things down past a major obstacle.

My thoughts are with all of you with lingering treatment effects- Sophie

Lynn,
I am one of the lucky ones who, at 5 1/2 years out am able to live almost as I did before. I can eat and enjoy the taste of just about anything that is not too spicy and, but for the water bottle that is a part of my hand,walk around enjoying life just like everyone else.

However, at 3 months out I was probably worse off than you.I still had a sore in my throat, I had a lot of trouble swallowing anything and in one of my swallow studies they discovered that I had a stricture in my esophagus which required dilation 2 or three times. I kept my feeding tube for approximately 10 months after treatment ended and for about a year and a half after treatment ended lived on soup and milkshakes. Things that required a lot of chewing were just too difficult to enjoy so I hardly bothered.
However a few months later, when I was almost two years out, suddenly I began to be able to eat all kinds of food. My taste came back, I began to enjoy food, and I could eat almost anything as long as it was not too spicy and I had water to wash it down. Suddenly I was free and could eat a sandwich on an airplane or even catch a quick meal in a McDonald's if I needed to.
So the point is...don't give up hope. I am by nature a very impatient person, but this stuff requires patience...that's why they call us patients! I agree with others...raise hell with your docs if you need to. I was treated at the famous MD Anderson Cancer Center. As good as they are at treating people with cancer, most of the docs aren't oriented to the wellness side of things. When I got depressed after treatments ended, I was the one who got in touch with the wellness people at MDACC and found out about free psychological counseling, etc.The medical staff never talked about it.

So, I repeat, keep the faith, and at the same time, be the squeaky wheel if things don't feel right.

Take care,
Danny G.

Nelie,

I never said that something must be wrong with her because she wasn't like me. I only said what I typed. The good thing that came from my post was that it brought out the posters like you and Sophie and Danny that could offer her comfort in being not like me and that is what this site is all about.