One other thought....I had almost forgotten. My treatment plan was to have an IV flush the days following Chemo with a blend of various "things. I remember Potasium being in there with other "good" things. Not sure if this is Std Protocol at Duke or based on the Dr ?
Also they always had the nutritionist meet with me at least 3 times a week to grill me on food intake, fluids, taste issues, exercise, ideas on how to get a calories/protein . In truth she was very motivating and a big help Duke also had a Psych person vist with you frequently to help with the mental aspect of treatment, pain, frustration , etc. I am a half full kinda of person but it was nice to have someone to yell at, talk to etc. my point is use all of the resources they have...you are paying for them.

Geri

It looks like Richard's specs are about the same as mine were with BOT. The facility where I underwent treatment had me to select a set time for radiation each day and I picked 10:30 AM which worked great for me. I think the time you select is more of a personal choice for whatever fits your situation better. On my chemo days I would just go straight to the "chemo suite" following radiation where I would be until usually about 4 to 4:30 PM after starting around 11 AM.

The PEG was a real pain in the neck but was a necessary evil. In fact, the center where I was treated would not treat a patient for H&N cancers unless they agreed to the PEG to begin with. Once I was 3 to 4 weeks into treatment I saw exactly what they told me about. I had to do all intake by tube for about 3 weeks but I would always try and drink as much water as I could by mouth just to keep the swallowing tissues active and avoid atrophy. I was warned about such a problem that could require need for a throat stretching procedure down the road. Just the thought of that kept me drinking that water every day! One bit of advice for Richard regarding that tube. . .tell him that if at anytime he has it uncapped for feeding or cleaning and feels an urge to cough, put the cap on that thing first! I, or rather my wife who was in the line of fire, found out the hard way!

Good luck and both of you just hang in there, take plenty of notes and follow all of the instructions and it will not be as bad as you might be anticipating.

Bill D.

Hi, Much thanks to all of you for your responses and info. The fluoride trays for Richard will be ready next week. Should he start using them before TX begins or wait? Also, to what extent did any of you have dental issues due to the TX? With the IMRT it seems as if they make every effort to really zero in on the cancer even though the whole area is affected. Did any of you have problems with silver fillings? His dentist did a cleaning and did some repair work and said he was good to go. Were anti-nausea drugs prescribed before the chemo or given during? I know he will be monitored, but chemo along with radiation is so daunting, especially after being so healthy all your life. The doctors were amazed that we aren't on any medications for anything. I guess that is unusual for people our age. Is there a difference in the damage to the salivary glands with BOT as opposed to tonsil or oral cavity? I know that I have a lot of questions and I'll ask the doctors, but all your feedback is reassuring and helpful. Thanks ahead of time ...Geri

There is no reason to not start the fluoride as early as you can, it will no no harm, and will have those extra days to penetrate into the enamel of the teeth. I had no problems with fillings and crowns made of many different materials. The impact on the salivary glands and other vital structures is directly going to be impacted by their ability to map the treatment around these anatomical structures. Some structures will have to have radiation pass through them to reach the areas that need to receive the radiation and 100% sparing of important non malignant structures cannot be avoided. So there is always some damage to these areas. However compared to the treatments that those of us went through a decade ago, there is significant non disease involved structure sparing with IMRT.

My dentist started me on fluoride 1 month pre Tx and I have used it every day since except for a few here and there. I also keep my trays in my mouth for 30 mins and I do it right before bed time. I now use a generic brand and it saves me a bundle each tube.

I got my fluoride trays pre-surgery and started using them then. I obviously couldn't use them for a while post surgery but I picked back up with them right before treatment started.

Start the fluoride now, continue as long as possible and restart as soon as possible.

Hi everyone... Thanks so much for all your advice and comments. Well, it looks like we are all set to go on Jan. 5th. The peg tube will be put in on Dec 29th. If any of you have advice about that procedure, let me know. The nurse mentioned that there would probably be some discomfort for a day or so. The first chemo and TX will be on the 5th. I was a bit surprised that the Dr said 4-6hrs. a treatment. With TX on the same day, it sounds very daunting. Did any of you lose the hair on your head from chemo. The Dr commented that there might be some thinning, but maybe not. He also said that some people have nausea and others don't. Richard is having only Cisplatin. Any advice about chemo would be greatly appreciated. We are pleased with the care so far and everyone has been very helpful. If the answers to my questions are posted elsewhere on this site, direct me there. I know it can get tedious to repeat yourselves with newbies. The reality of what we are about to go through is starting to sink in. I know we can't know exactly how Richard will respond, but we will be prepared with all the Biotene products, aloe vera jell and liquid supplements and anything else we can think of. I'm sure as time goes on, we'll be adding other things to help. I want to thank you all again for your help. The doctors can talk until they're blue in the face, but you really can't understand unless you've been through it....... Geri

Geri:

I didnt lose my hair from cisplatin. Like most others on here, I lost some hair on the back of my head from radiation. It was near the bottom of my head each side where I lost it. Dont worry, it can be hidden and will grow back.

Ask the docs about prescriptions that you can get now. It will save you time later when you will be busy caring for your husband. The chemo usually hit me about 5 to 8 days after I got my dose. Even with anti-nasuea meds, I was really sick. Im really not the best example to use since I didnt have a caregiver making sure I had proper nutrition and hydration. To be honest, oral cancer treatments can be very difficult to go thru. It will take its toll on not just your husband, but unfortunately on you too.

Im really sorry to tell you the bad stuff, I know its a scary time for you. Its not easy but it is necessary and can be done. Ive gone thru it twice and consider myself one of the lucky ones. Keep asking questions and write things down to ask the docs, that can be very helpful.

Its also a good idea to get your husband to eat alot right now and get alot of fluids too. Eating will become difficult during treatments, so he needs to bulk up now and not worry about his weight.

The peg area will be a little sore for a couple days. Then its not a big deal. I used neosporin and covered it with gauze pads to keep it clean and healthy. Your husband needs to keep it clean so it doesnt get infected. Is he getting a port? That would make chemo easier.

Keep asking questions, we will guide you thru this.

peg hurts for about a week and if it lasts beyond that, gets worse ot gets red have it checked for infection, which happens quite often.... they will show you how to care for it and how to use it so dont worry. it is a big help when needed. best wishes