What can I expect after radiation for oral cancer. How can I get back to normal

Susan,

The best thing you can do is take tons of time reading these boards because everyone is different in their healing timelines. After spending time doing that, you will get a general idea of what to expect and some good ideas about starting back to eating and other "normal" activities.

I think my Bill was very lucky even though he was sick enough the last week of his treatment to be in the hospital. Once out and finished with his last three treatments, he saw immediate improvement, was off the pain meds within three days and was eating/drinking by mouth totally after two weeks. Not everyone gets better that fast so you need to temper your expections. Lots do come "out of the tunnel" after 3-4 weeks but totally back to normal...well, you may never be totally back to your former self...we refer to the "new normal" instead. Expect your saliva to be greatly diminished for a good while..some seeing improvements up to two years out.

You have been thru a lot and it will take time to heal. My best to you during this time,

Deb

Susan,

First off please put a date to your Signature Line so we all know when you started the rad.

As Deb says we all can react differently to the same Tx and some breeze thru without any problems and some start having problems day one but most of us (concurrent chemo/rad) are basically OK until about the 4th week and then we get progressively worse until about the 3rd week post Tx. You will probably have some or all of the following: loose your taste, start producing thick muscos, develop mouth sores, loose weight, get dehydrated, have constipation issues, loose the hair on the back of your neck, develop a tender red neck, have nausea issues, swallowing difficulties, tight jaw, loose your voice, develop total body weakness and finally the dry mouth kicks in. It's not a pleasant treatment and the chemo does add to the problems and you didn't mention if you were having chemo.

When you do finally walk out of that tunnel you will remain weak for a few months. The dry mouth and taste at least for me returned over a 2 year period and they seemed to improve at the same time. By the end of year 2 my taste and saliva had returned to what I guesstimate 95% of my pre Tx norm. I did develop thyroid issues and I have to take a small daily pill. I also ended up loosing some of my hearing due to my chemo (cisplatin) but really these are nothing more than minor inconveniences.

Thank you. Boy I thougt it would be a lot sooner. I thank you for all your help.
Susan

Hi Susan,

I'm five months out and i feel great!! I still issues that i have to sort out but my energy level is almost back to where it was before. In fact i went out for a girls nite out till 2am on the weekend!! I never thought that would ever be the case just after my treatment because you feel so weak and tired all the time.

I'm back at work, looking after my two yr old, cooking etc. I can eat almost anything except for spicy, acidic and hard foods like crackers. The taste is yet to come back - but that hasnt stopped me from eating!!

Guess all i'm trying to say is when you first finish treatment it just feels like you are never going to get better. But you do, its a slow process but you will get better.

Wishing you all the best for the rest of the treatment and keep us updated on your progress.

Minh

Everyone recovers at their own pace! Some people are still struggling 3 months out while others returned to work after 2 months. When I went thru radiation w/ chemo I had a difficult time but was able to return to work part time after 2 months.

You cant rush recovering. Your body has been thru a war and must rebuild itself. Its a long process with good days and bad. Soon their will be more good than bad days for you. Sorry that I dont have better news but it can take up to 2 years to get back to normal. Relax and dont worry about this, it will happen. You will bounce back.

How long ago did you finish radiation? Did you have chemo? Please add to your signature so we can better help you.

Susan, you're getting wonderful advice here, and you've definitely come to the right place. My fellow David pretty much covers all the issues I can think of, most of which I experienced as well.

Please use this forum - and Personal Messages, don't forget those - as a lifeline during your treatment.

I hope they're giving you everything you need for pain, whether in pill or patch form and/or as liquid numbing to help you swallow what if it hasn't happened already will more than likely eventually come to pure liquid nutrition. (you didn't mention whether or not you had a PEG).

We're all in your corner all the way. You'll definitely come through this.

David 2

Hi Susan, David summed upnthe side effects really well.
Just a couple more things, if it does get so bad that you can't swallow, like for martin do not try and fight the nasal feeding tube (like Martin did) in the end he got so thin and weak that they threatened and said either you accept the tube or you stay in hospital. It was such a relief with the tube, he hardly felt it and I could feed him with no pressure and without battling with him or hurting him. If you do manage to swallow to avoid loosing too much weight try dairy products, full fat milk, yoguty drinks, milkshakes (that's what our dietician recommended).
Your taste buds might go funny, for Martin everything was salty, even the water, others said food tasted metallic, or rotten. It depends. But maple syrup disguise the taste for a long time.
Recovery of taste buds and saliva are like a see-saw. It took about 3 months for some improvement to come and then the taste buds go away and come back. Martin says the taste buds are back 75% and he is quite satisfied with that. His saliva glands have recovered in the mouth but not in the throat, but every one is different. So he has trouble with dry foods and chicken. He needs things in sauces or slimy foods and he needs to drink a lot with meals. But apart from that he can eat a normal diet as such, meat vegetables, potaotes with lots of butter (but not chips), citrus fruits are a no no but melon type fruits and bananas are fine. Just make sure you keep drinking water.
And most of all if you do get bad side effects don't get disheartened, it might take a while but things do improve and there is light at the end of the tunnel.