Hi Pam,

I think your questions are getting harder for me to answer, but I'll try.

I think I had a lot less nausea than the doctors expected me to have. They gave me a bunch of anti-nausea drugs. In fact, one of the hard parts of the entire treatment was keeping track of all the different drugs I was supposed to take (and the schedule for taken them, etc). Its nightmarish. I kept charts on graph paper where I would list all the drugs down one side of the sheet of paper (top to bottom) and I would list the days across the top of the paper (left to right)... then each day I'd go down the list and mark which drugs I'd taken when. Maybe you'll have somebody take care of this for you and just tell you to take this pill or whatever; but I only have myself to rely on, so I needed a system to help me keep track of it all. I was having trouble remembering which drugs are for what purpose; and the doctors would often refer to a drug by its brand name while the pharmacist would label it by its generic name... so I'd keep lists to enable me to translate back and forth. It was all a bit of a zoo because the things that were bothering me (the side effects) would change every few days, so the drugs one needs to take would change as well. The whole purpose of all these drugs and regimens is just to minimize the side effects of the chemo, or the side effects of the other drugs. So you take narcotics to reduce pain but the narcotics cause constipation so you take laxatives to reduce the constipation... but then they tell you to take some mineral (because your blood tests show you are low on this mineral) and that turns out to have its own laxative effect so now you have diarrhea and you figure out you should ease up on the laxative.

Anyway, I don't think it was nausea that kept me from drinking enough water. I'm not really sure what it was. I just didn't want to eat or drink anything. On some days it was a struggle to force myself to get 150 calories (one can of sliced peaches). I had several flavors of Ensure and would feel proud of myself to drink one small bottle (as my entire day's worth of food and drink). It was at these times that I was not only getting dehydrated, but I was shedding weight like mad. [Silver Lining: I'm still 25 pounds lighter and now I fit into a bunch of very nice old clothes that hadn't fit me for ten years.]

The first round of IC was harder than the 2nd and 3rd rounds for two reasons: (1) I was so miserable during the 1st round that my MO dropped the dose of 5-FU by 20% for the other two rounds, and (2) I didn't know what to expect during the 1st round but it taught me a lot... within each round, there was a progression of different symptoms; I learned to recognize them and what I had to do to cope with them.

The chemo kills fast-growing cells. That includes cancer cells but it also includes the cells that line your mucous membranes. You have mucous membranes lining your entire oral cavity, your nasal cavity, your throat, your stomach, your intestines right on down to your anus. Everything is affected. All the cells that line these mucous membranes die and eventually grow back, until they do you are in misery. I developed painful sores inside my mouth, similar to canker sores. I got a fungal infection, known as Thrush, which is common in babies. My tongue and soft palate would swell up and cause me to gag, unless I sat upright... but sitting upright would keep me awake, so I stayed awake for 48 hours (and killed the time on the Internet). The constant gagging was unbearable and would cause me to run to the bathroom to spit up into the sink (eventually I just kept a bowl next to my bed that I could spit into; gross but effective).

Has anyone told you to have your teeth checked!!! Before you start treatment, go directly to your dentist and get a RECENT set of full mouth X-rays. I was lucky that my teeth were in very good condition. I've heard of lots of people who needed to have teeth pulled prior to treatment... some people needed to have ALL their teeth pulled. Get yourself some prescription fluoride toothpaste. Get some ultra-soft tooth brushes. Get yourself some custom-moulded trays. Once you are in treatment, do NOT floss your teeth... carefully and very gently clean them with the ultra-soft toothbrush (careful not to hurt the gums and to avoid those mouth sores). Discard any alcohol-based mouthwash. Once treatment is over, and your gums get back to normal, you can start flossing again. You should also fill the custom-moulded trays with fluoride gel and place this on your teeth daily for a minute or two... for the rest of your life. This is because the radiation will give you dry mouth which will make you prone to dental caries (especially on the roots of the teeth, where they are hard to fill) and the fluoride treatments will help you avoid dental caries. If you don't do this, you'll lose your teeth in the years after treatment. If, after treatment, you do need a tooth pulled (or a crown), you might want to have this done in a hyperbaric chamber; the hyperbaric chamber infuses the region with oxygen during the procedure and, hopefully, prevents osteonecrosis of the jaw (ONJ). What's happening here is that any radiation that hits the bones makes those bones susceptible to "bone death" (osteonecrosis) if they become traumatized; so pulling a tooth after radiation treatment will traumatize the jaw and that might cause ONJ. You don't want ONJ.

The actual radiation treatments were, for me, relaxing (almost pleasant). I'd lie down on the table, they'd place my custom-moulded mask over my face, and I'd just nap for about 30 minutes while the IMRT machine did its thing. The worst part was that the machine made some noises, which would interfere with my ability to listen to the music I had playing in the background. Really nothing to it.

And, compared to the chemo given in IC, the chemo that accompanied the radiation treatments were (in the words of my MO) a "walk in the park". I had so few side effects its hardly worth mentioning.

But the effects of the radiation treatments were cumulative. The first couple weeks weren't so bad, but things got worse as treatment progressed. From the start, I put lotion on my neck 3-4 times every day... at first this seemed pointless, but my nurse was doing a study and I wanted to help out... toward the end it all made sense and I was glad I did this, because the radiation burns on my skin were MUCH milder than some folks had. Still, there were a couple weeks around the end of treatment where the skin on my neck was quite painful and I was applying an astringent to keep the area dry until it healed itself. The insides of my mouth developed sores (sides of tongue, insides of cheeks, gums) and I had swollen soft palate, tongue, esophagus. Thick gobs of mucous would develop in my throat and it seemed impossible to clear it out (although I was desperate to do so). Although I was told that carbonated beverages would be intolerable (due to the mouth sores), I found that Coca-Cola had an almost magical ability to cut through the mucous and temporarily restore a reasonably normal mouth feel. So, to control the pain, I'd load up on narcotics & swish some 'Triple Mix" (aka "Magic Mouthwash")... then, to restore my mouth feel, I'd wash my mouth with Coca-Cola. This would bring some temporary relief and I'd be happy for awhile.

There are other mouth washes that can be useful at different times. (1) Salt Water, (2) Salt Water with Baking Soda, (3) a product called Alkalol, (4) Biotene, (5) Tom's of Maine. Try different things and see what works for you. Your mouth and throat will be changing constantly through this process... the problems (and solutions) you have one day will morph into a different set of problems (and solutions) a couple days later. There is no one answer.

Hope that helps, Rob