Day 13 of rads today. I had really hoped (and I know Ken did too) that since he basically breezed through the chemo the rads wouldn't be so bad. He is still eating a somewhat normal diet but I suspect for not too much longer. It makes me so sad... I wish our kids didn't have to see him get sick. I hate cancer!

Lisa,

Your entering the toughest part of the program, but I can tell you from the experience that the kids adapt and bounce back the fastest. My 13 year old got used to some of my new limitations and was even suprised when I started doing the normal stuff again as I recovered.

I just got back from a two day celebration of the 100th aneversary of the Boy Scouts, camped overnight for two night (28 degrees)and walked in a 5 mile parade. 4 months ago that would have been an impossible task. My kid was actualy impressed with me doing normal stuff.

Lisa

Very few people breeze thru radiation. Trying to give you some bright news in a dismal present, it may be just as well your husband did not toleratethe Erbitux. In retrospect the terrible skin side effects & aggravation of radiation damage were not worth it especially considering it did not prevent a recurrence. In fact the RO switched me up for the second chemo TX saying it appears now that Erbitux doesn't work well on some BOT cancers.

More good news, my mouth sores and radiation damage were horrendous but within three months after TX mostly mitigated. Others bounced back much much faster It is a very slow healing process but the sores, unlike other effects of radiation actually go away. Trust me, you will appreciate the difference. Keep the Faith

BTW, I hate this cancer also and am sorry your kids have to see this.
Charm

Lisa,

This is a very tough time for you, Ken and your children. You are getting some great support here. My thoughts are with you. Hang in there!

Anita

So Ken has 6 more radiation treatments to go (including today). I haven't posted in a while - it started to go bad so quickly and we were so scared but amazingly it turned around. Not to say that his throat doesn't hurt or his skin isn't really realy red - but it really hasn't been so bad. The doctor gave him a prescription for what he calls his triple mix elixer - hydro, lidocain and malax. He takes a gulp about 10 minutes before meals and has basically been able to eat most anything. He hasn't lost any weight. In fact through this whole process he has gained almost 30 pounds. The best stuff is the Caphosol. Worked a miracle. Within a couple days of using the stuff (5 or 6 times a day) all of the sores in his mouth were gone and are still gone and the mucus is nominal. He carries a bottle of water and uses Numoisyn for the dried up saliva glands. It could all go to hell in a handbasket this week - but we are sure hoping to tow the line. He still goes to work every day - just doesn't put in the 10 or 12 hour days - more like 6 or 7. Last Thursday when the doc looked in his throat he commented that he'd never seen a better looking throat this late in the game. At night he takes either a 30mg morphine sulphate tablet or a 500 mg hydro so the pain has been tolerable. He is definately tired and sleeping longer, later and napping when he can. I'm pushing for him to come home after rads this week so he can rest and not have to talk - instead of going back to work - but we'll see.

I hope no one takes this post the wrong way in that woohoo my husband has had such an easy time... What I'm trying to get across is that sometimes its not so horrible and it can be tolerable. We feel very blessed at this point.

Lisa,

Never feel bad about good news. There are many who read these posts who want to get some idea as to what they can expect. Ken's case shows that there are those that do not have such a tough time.

I had it fairly good until the end of treatment when I developed some mouth ulcers. Other than that I maintained my weight and only missed a few weeks of solid food.

It's great that Ken is feeling good enough to work. I was sleeping a good deal at his stage.

Lisa, Gordon is still suffering horribly. When you say a mix. of hydro, lidocain and
malox, (hydro being water?) what proportions do you use?
I've never heard of Caphosol - what is it used for?
Seems we have to get info. here rather than having doctors suggest these
things for us. It's kind of frustrating.
And thank heavens someone is having an easier time of it. I hope you and Ken will have a faster recovery when it's all over and get your lives back to normal.

OK, now I know Caphosol is a prescription med. used for mucositis and
dry mouth. Don't know if it's available in Canada, but I will be asking
about this. Anything that will help!
Still not sure about the proportions for the "Pink Lady" - lido. and maalox.
Thanks, Anne

Anne - the hydro is hydrocodone... the mix is ratio is 1:1:1 - it has been a God send for him. He does not have a PEG - and as long as I overcook everything he's eating just fine. Had steak last night - definately not overcooked - but pasta and such, all the veggies etc. He's been lucky so far.

Re: Caphosol: the Pain Management team at the cancer clinic we deal with
has never hear of this. I called one of the larger drug store chains and they
could find no reference to it. This must be something only available in
the U.S. However, I've printed out info. from the product website and will
take it in for our appointment tomorrow. The pharmacist seemed to think
it might be similar to magic mouthwash, but I'm not sure that it really is.
Anne