Roger;
I wish you the best and I personally believe you have made a very wise choice. I visited my Radiation Oncologist today and he mentioned that I needed to get back to the dentist now that I can get my mouth open and can probably handle a cleaning. He said that care of the teeth needed to escalate now with cleaning every 4 months and he mentioned the trays as well.

On my dentist visit prior to treatment I was prescribed a flouride paste to use through treatment. When I told my RO I had started using the paste again he said that was fine as long as I got back into the habit of using it daily. He stated the radiation really abuses the enamel on your teeth.

You will have challenges through your treatment but you will make it. As Mark stated you will find a lot of help and information here.

Stay strong & Best Wishes,

Steve

The tray is a soft insert set to hold the fluoride on your teeth for the time required -- I found that removal after treatment was nauseating me, so I just manually applied the paste with a brush and held it in my mouth for much longer than the time alloted while I read a book or watched TV or messed with computer.

What you want to do during treatment is be aware of trismus, and how to avoid it, and also try to swallow as much as you can during the treatments so you don't lose that ability.

I recommend a PEG; if you don't need it, you don't have to use it (except to flush it with water to keep it cleaned out), but if you need it, it will be there.

One final note: A lady of my acquaintance had her treatments (IMRT in her case) at MD Anderson in TX. Her dental oncologist made some sort of "stent" to protect both her teeth and saliva glands and she came out of the treatments with lots of saliva intact; I don't know if that was appropriate for the XRT that I underwent, but I wish I could have known enough at the time to investigate the possibility.

Roger,

I am including a post that I wrote about a month ago for some others and have added to other posts since then. I hope it help you prepare for what will happen to your body. Gaining as much weight before you start and 2 weeks into Tx can't hurt but I doubt that you will put on many pounds. You need 500 extra calories a day to gain just 1 pound in a week.

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

I had a private message about the dental stent I mentioned above, so here's part of my response for the public "record".

My friend had it done just a couple of months ago at the MD Anderson Cancer Center in Texas (one of the Super-Centers); her dental oncologist provided the stents.

I had never heard of it either; I thought a stent was something they inserted into blood vessels to keep them open.

A Google search of "dental stent oral cancer" came up with this site from the UK (Do a Ctrl+F and search for "stent")

http://rdoc.org.uk/protocol.html

According to her, she came out of her 35 IMRT treatments with something like 50% saliva on one side and 75% on the other (heck, I didn't even get measured by anyone, altho after one year some is coming back). Despite the tone of the article above, I don't believe she had any of her teeth pulled.

Here's an even better link from the M D Anderson Center re: Stent

Here's more concerning trismus and fluoride:

Trismus is being unable to open your mouth wide (apparently the radiation affects the fiber in the muscles or tendons of the jaw; I didn't discover I had it until I tried to take a bite of an apple and discovered I couldn't open wide enuf to take a bite!)

Do a search of the site (go to bottom of Forums Page and click on Homepage, then click on Search; the search button at TOP of page only searches the forums.

Here's the link:

http://www.oralcancerfoundation.org/dental/trismus.htm

Opening wide often and putting tongue depressors across your mouth and biting on them are both supposed to help, plus there is some sort of rubber wedge system available ($$ prescription) to keep it from happening. It sneaks up on you, esp if you are getting your nourishment from a PEG (feeding tube) because you aren't opening your mouth much.

The fluoride treatments (using a paste called Prevident) are done once a day, every day for as long as we have our teeth (hopefully the rest of our lives!) -- After flossing and brushing my teeth at night, I put the paste on my wet brush and brush the stuf in, then hold it for at least the recommended ten minutes (usually longer as I feel more is better in this case) and then don't eat or drink anything for at least one-half hour after the ten minutes is up. If one uses the trays, put a line of paste in each of the uppper and lower trays and then put them over the teeth for the allotted time.

My dentist writes a prescription for the Prevident and I get it filled at the pharmacy (dentist wants almost $20/tube, pharmacy is lots less expensive thru my drug plan, which doesn't seem to want to mail order the stuff).

David,

I have read in your earlier posts that you did not have a PEG/feeding tube and still wonder at how you made it without one. I received my treatment and am still under the care of Emory University Hospital providers. Prior to the start of my treatment last May I was informed that I would have to have the PEG installed before treatment. Apparently, this policy began at Emory about 8 years ago and they will not treat you if the PEG is not installed first. They advised that they had too many cases of patients whose treatment was interrupted by having to stop and have the PEG installed mid-treatment.

Bill D.

Bill D,

My RO told me that at Moffitt he preferred that his patients went through the IMRT without a Tube and he explained why and I looked young (his words, not mine) and in good shape and he thought I was a good candidate to make it through. He did warn me that it might be difficult and if I had to have it put in after Tx started it could really mess the schedule up. He then said "it's your decision". Not knowing anything about the pain and nausea he was talking about and being a typical macho stupid male I said "lets go for it" as I puffed my chest out.

I have recovered remarkable well and have had zero swallowing problems and have eaten anything I wanted so I am satisfied with my decision. Would I have done it knowing what I went through...I'm not sure but I guess I won't ever have to face that decision.

David,

My hat's off to you for making it through without the tube. I just didn't have a choice if I wanted to be treated at Emory. The tube was a miserable experience but probably more so for my wife who took care of my feedings. I just could not deal with the "freaky factor" of pouring something directly into my stomach through a tube. It just all seemed so unnatural. I also learned, after one occasion, not to cough while the tube was uncapped for a feeding.

Best of continued good news for both of us as healing continues.

Bill D.

Hi Bill,

I also found out that the tube worked both ways and considered it a party trick to clinch my abbs and watch it come back into the surenge. My wife made me laugh one day when I was "feeding" myself and that is how I found out.

The other nasty part about the tubes is the cap wears out after a while. One night I woke up in a pile of stomach contents that came out of the uncapped tube. Not pleasant.

Jim

You guys are grossing me out...and I thought I went through some disgusting things in my reaction to TX !!

Jim,

Remind me NOT to go to a party where you will be. LOL