I will get the last of my 60 rad treatments Monday. From what I have read on this forum and from talking to others in treatment I have been blessed with relatively minor, but no less uncomfortable side effects. I have so far experienced; minor sore throat, almost complete loss of taste, dry mouth, minor soreness inside the mouth, and recently, "sunburned" skin on my neck and shoulders. I haven't had to use my peg tube at all.

Last week, when we visited with the doctor, I asked how soon after treatment could I have the peg tube removed. When the doc replied "a month or 2" my wife said she had never heard me say the word "WHAT?" so loudly. I was thinking maybe a week. A friend of mine who under went a heavier dose of radiation treatment along with chemo had similar, but more pronounced,symptoms as mine. A month after his last treatment his "sunburn" is nearly gone, he can swallow soft foods but he is still using the peg, and he is beginning to recover some sense of taste.

I will see the rad doctor on Mon. but the vibe I am getting from her is that once treatment is done she is kind of done with me. I don't have a "family doctor". I get routine stuff done with my primary care doctor at the VA but he is kind of a "pill pusher" and not very familiar with the cancer stuff I have been doing. The only other doc I have seen is the surgeon who operated on my tongue and neck.

Though I appreciate very much the fact that I have been blessed with relatively mild side effects and I'm not prone to depression, I am becoming anxious about the recovery process. I want my teeth back, I want to be able to taste the food I smell, and I want this damn tube out of my belly!

My questions for the forum are:
1. If you weren't using the peg at the end of treatment did you find a need for it post treatment?

2. For those who had their teeth removed, how did you know when to be fitted for dentures and who determined that?

3. How long before fried bacon tastes as good as it smells?



Thanks
Bud

After finishing your treatments, recovery can be a very long road. A complete recovery can take a full 2 years. Most patients will notice continual slight improvements in their sense of taste and dry mouth up until about 2 years post rads. First comes the thick gunky mucous which hangs around anywhere from 2-6 weeks post rads. Then the dry mouth phase will take over. These things will impact a patients ability to eat, most also have not much of an appetite. The recovery phase for most is a frustrating time with lots of ups and downs.

Focus on what is within your control, your intake. Every single day take in a minimum of 2500 calories and 48-64 oz of water. After rads adding high protein whey powder will help speed healing. When a patient is able to go for 2 months without using the feeding tube then they are ready to have it removed. This cant be rushed. During that 2 months, the patient must eat and drink everything by mouth and sustain their weight. When you can do this then check with your doc and ask about having it removed. Better to leave it in (even though we all hate that darn tube!) and not depend on it 100% than to have it removed and end up needing it again.

To answer your questions...
1-- Since radiation continues to work even after you stop treatments most patients will suffer the most from the side effects the first few weeks. Many even get worse after rads end until about 3 weeks post rads. Patients can feel a bit abandoned after finishing rads without seeing their medical professionals daily anymore.

2-- Your delicate mouth tissue is probably swollen and sore so it will be a while before you can get dentures. I would suggest waiting for a full year before you attempt a fitting. Your mouth needs to heal which can take a long time after rads. Keep rinsing at least 30 seconds 5 times daily with the mixture of 16oz warm water, 1 tsp baking soda and 1 tsp salt. A waterpik used on its lowest setting also can help keep your mouth clean.

3-- Your sense of taste will slowly come back after about a month post rads. One day something might taste great and the next day its back to tasting like burnt cardboard. When relearning to eat try a buffet style restaurant where you can try a couple bites of many different foods. If you go back a couple weeks later, you may find you are able to enjoy some other items. After about 3 or 4 months post rads most patients are able to taste most things. Sweet things like chocolate tend to be one of the last things OC patients are able to eat again.

Have patience, you will get there. It just takes time, more than any of us like.

If you weren't using the peg at the end of treatment did you find a need for it post treatment?
For the first 2-4 weeks post treatment, many experience continued or worsened side effects. Depending on how easily you swallow now is good indicator if you may need the PEG during this time. If you have fill ability to eat and swallow with little discomfort it would be unusual for you to be forced to need to PEG. If you are having a tough time swallowing but still get by, you could very well need the PEG. Given you already have one, I sure would not want to pull it early. Be patient.

For those who had their teeth removed, how did you know when to be fitted for dentures and who determined that? No personal experience but I'm sure the gums are adjusting to the loss of teeth as well as some effects from the radiation. Just a guess but I'd think you would not even have a serious chat about it until a couple months post.

How long before fried bacon tastes as good as it smells? Hopefully never. Bacon is banned for life. A piece here and there on special occasions is great from time to time I will admit. Taste and smell take time for many and often will never be exactly as before. Since my time here, I have not seen any pattern or indicator to predict where one returns.

It spans the entire range. I am very fortunate to be 100% as before. The only thing is my head sweats a lot when eating spicy food. Others are long term PEG users. Just have to take it one day at a time.

Don

Bud,
Great advice from two very Knowledgeable people here. My first tube, eight years ago became a great friend the last few weeks of my treatment. When I completed, I only thought I was done! Radiation, the gift that keeps on giving, just kept going with the sores, trismus, lack of saliva, and thick stringy mucous! I was challenged by my oncologist/surgeon to gain six pounds on my own and tube could come out. What a challenge! I had that thing for several months before I was "Normal" enough to have it removed. We are all different but there are usually reasons for this type of decision, usually for our well being. Going into this latest fight I am in they didn't even have to push me. I had lost enough weight I knew I was going to be in trouble quick if I didn't (Plus my swallowing is in bad shape due to nerve damage this last go around). Formulate some questions and ask your doctor their thoughts on why you need to keep the tube if you're adamant about losing it. I would think they have some good reasoning behind it.

Thanks for the replies y'all. I'm going for my final treatment in an hour and I'll ask the doc the same questions I posed to you. I'll move my posts to the post treatment thread afterwards and try to report regularly on my progress.

Going in to #30 my neck burn is distracting but not intolerable with the Aquaphor cream, usually worse by the end of the day. Interior of my mouth and tongue are a little sore and touching my tongue to the roof of my mouth feels like licking fine sandpaper. Throat is a little sore and real dry but I can swallow fine (mostly "Boost" protein drink and a cup of noodles once in a while for texture). Scrambled eggs go down pretty well also although I can't taste them. I have noticed in the last couple of days it is easier for me to accidently aspirate liquids when swallowing. Don't know why that is.

See you on the other side.
Bud

The inside of your throat is damaged, Radiation damages muscles - and the effect can be long term, and it also effects the way you swallow - it can also damage you epiglottis which helps prevent fluids and food from entering your lungs. This is all why a peg should be kept in place post treatment (plus the fact - as someone else told you - that rads continues to get worse after you've actually finished treatments)
Try thicker fluids this should help with some of the aspiration.
Hugs...