before I had my surgery, I was becomming exhausted from the cancer, and felt fatigued all the time...

Of course, this may or may not have been impacted by the emotional aspects of a recent diagnosis...

It's possible your Mom is suffering emotional trauma too, and don't overlook this important consideration of her health.

Also, I agree with Amy.

The health care one get's is sometimes equal to the health care one demands.

I had what I believed was fatigue when I got my diagnosis and had the surgery etc. but for me I know now it must have partly been the illness and mostly the stress of having it, doing the tests, seeing so many doctors etc. This Tuesday, I did get fatigue, and now I know the difference. I can't even explain it. I am exausted all the way to my bones. My eyelids are half closed and just doing the smallest thing takes a great deal of effort and thought.


Blessings,
Barbara~

Fatigue is a normal part of the treatment process as is depression. I know of two people who let the deprression get the better of them. Your Mom is 9 years older than I, but she can fight this thing. It sounds like you are probably in good hands. Daily radiation with weekly chemo took care of me. I'm only 8 months out, but I'm sure your Mom can handle the treatment with your support.

Steve

Brian, I had asked about the biotene and was given the impression that it can only be given as a prescription. Is this true?
I noticed the other day after giving 5 bottles of boost through the peg (not all at once of course) that Moms "pep" was better the next morning. On Fri. when we saw the nutritionist, Mom was telling her she is eating. UM.. well, I've been keeping a close eye on how much she is eating and lets just say, if you consider 1/4 cup of mashed potatoes, and 1/4 cup of smashed sweet potatoes eating, then she is eating. I realize that these type of foods are the only thing she can tolerate without the major pain, however, the amounts aren't adeqate. I also noticed Mom saying she has ate other things also, which she had but it has been a week or 2 ago. I THINK she doensn't realize how small amount she REALLY is eating. I don't want to upset her and dispute this in front of others, but the nutritionist could tell by the weight loss and my expessions that Mom isn't getting the proper nutrition she needs and moved the peg feedings up to 8 boost high protein cans a day. This also insures she is getiing the water/fluid intake she needs. Can anyone that has had a peg tube tell me how long the site where it is put in hurts? A year ago when she was having a skin problem, her Dr. gave her lexapro which she is now taking again, her primary thinks this is a good idea to help the depreesion that many have mentioned here. I am afraid sometimes that my advocacy may appear too much and the last thing I want to do is have Mom feel I don't think she can handle things! I would love for her to get on this site herself but 1) she never has really like messing with the computer other than a few simple things -old school ya know, and 2) she knows I'm doing all I can to get all the knowledge we can get. I will be purchasing the book Amy suggested and your right Amy, the support I recieve through here is OUTSTANDING. I make sure I come home a day or 2 during the weekend to see my hubby, children and grandchildren. This helps keep all in balance.
dee

Dee,

Biotene is definitely NOT a prescription item. I've found the mouthwash, toothpaste, oral gel and chewing gum in the dental care section of some of the major drug stores (and I think WalMart has it also).

Cathy

Dee, you ask about how long about the PEG incision site. I remember having a horrible time with mine, but much of it is perhaps on the type of PEG they used. Mine had toggles on either side of it that continued to dig into either side of my skin pretty deep. I also had to have extra flesh (proud flesh or granulation) burned off after treatment ended. I adjusted to it over six months, but couldn't wait to get it removed a couple weeks ago. It was again, causing me discomfort, probably because I was eating again, my stomach was pooching out and the toggles were once again digging into my skin.

Hopefully, your mother's PEG incision will heal up just fine.

Jen

Found the biotene mouthwash Thank you Cathy.

Jen: Moms peg has about 4-5 plastic "things" or maybe they are toggles? on hers that have to be lifted and cleaned under. So far it is working real well, a little skin irritation but I quess that is to be expected. Thanks for the input, I can relay your info to her as she was real concerned about the pain, (whether it was normal or not).

dee

There is a new Biotene product hitting the shelves in the next 30 days. It is a liquid that you can squirt into your mouth, tastes like...bananas I think... but my taste is screwed up so I'll just say fruity. It is not water-soluble so those of us that drink zillions of bottles of water a day won't have it rinsed out immediately by the first drink we take, though it does dissipate over an hour or two. Leaves your mouth feeling moist for that entire period. This is a winner. Small enough to keep in your pocket or purse, all the enzymes that are in the other products. I love this stuff. I got some pre-market samples from Biotene when I was in Laclede's office the other day asking for some financial help from founder, owner, scientist, Michael Pellico. I never really cared for the Oral Balance Gel. This product is far superior.

Dee:
I've been off the forum for a while, being home in Kansas now after spending most of the last 5 months in Chicago with my 75-year-old Dad while he was being treated for tongue cancer. The road is long and challenging, but the disease is survivable, even at your Mom's age & stage. The time you have together now will be precious to you both. My heart goes out to you. Email direct for any questions about being the adult child of an oral cancer patient. Hang in there.

Dee, I had only two toggles, not four or five. Even with the two of them digging into me, I not only had to clean all the time under them, but it wasn't until I had really bad raw skin under them that someone at the CCC finally told me those things needed to be rotated. Throughout the entire six months of having it, I always had a scabby sort of discharge around the incision site. One thing I can say is after a couple weeks of having it out, the site healed up really well. However, the entire time I had the tube in, I kept thinking to myself that surely the people manufacturing it could come up with a better design so the toggle things wouldn't cut into the flesh. I wasn't a large woman at the start of treatment, but if I had extra poundage that thing would have been really uncomfortable. During the first month I used plenty of gauze pads underneath the toggles, not only to catch the discharge, but just to keep the plastic from digging into me.

Jen