Hi all --

TGIF! Barry went through 8th treatment today, he didn't take the amiphostine -- was all prepped (hydrated, Zofran) and our nurse came in with the shots, and checked him out. She didn't like the fact he had a reddish area around yesterday's injection (she didn't do it, another nurse did, and -- for the first time -- Barry said it "hurt" -- it was given on his upper arm and not in the fatty area which our nurse prefers). She felt that this indicated a mild skin reaction which, if it becomes widespread, means the drug has to be stopped. She also said she's seen these small reactions never amount to anything -- but after some deliberation we all decided, what with a weekend on hand it would be better to skip a day and do it Monday (assuming the red area went away) when he would be seeing Dr. and nurse. He's getting pretty good parotid-sparing with the tomo and the Ethyol is just a "boost" so not as essential as it might be with less targeted radiation.

So toss one Zofran and 2 Ethyol sticks -- heck, it's only $$!

But without the amiphostine Barry had none of the mild "off" feeling which seems to accompany the drug for him, and was able to go to Hopkins cafe and get an excellent lunch.

Our nurse weighed him and he seemed to be down 3 pounds from yesterday, which none of us could fathom -- so I got on the scale and it read -- 3 pounds low (hey, I *like* this scale!) -- I weighed him at home and he is same weight on our scale as yesterday. So holding his own. Mouth OK as well but he thinks it does feel more "puffy" inside so we are waiting for that mucositis shoe to drop...

Did discuss pain plans and scripts today -- thanks to all for suggestions.

Have a great weekend,
Gail and Barry

My dad used the Ethyol for 2+ weeks then began to get site irritation. He had pretty big patches of irritation. He has stopped taking it. We are hoping the IMRT can spare one of his parotids-as he said to his parotid gland: "You're on your own now buddy." He felt awful from the Ethyol-fluish.
Have a nice weekend break!

Barry's irritation spot was only on one side where he was stuck, and about 1.5" in diameter if that -- pretty well faded now, we shall see about Monday. I gather if he continues to react they will stop it, if not, will proceed with caution. We do get a mid-week break as they don' t give it on chemo days.

Have you seen your Dad's IMRT plan? We looked at Barry's with RO, he wanted to show us how much of his parotids were being spared with the tomo -- to reassure him in case he couldn't continue with the Ethyol. I know the RO who did Barry's plan (whose specialty is parotid-sparing and also, amiphostine) said the drug adds about a 9-10% boost to the sparing possible with IMRT or tomo, (this from my consult notes, I do not have the reference). So it is not the "be all and end all" -- the radiation plan is more important. We will also meet with dental onc on the 30th, whose specialty is saliva and radiation dentistry, to evaluate Barry's status. He is rather keen on the newish drug Evoxac, as is Barry's ENT who uses it herself (she had HNC 18 years ago).

Gail

Gail and Barry, it sounds like you are doing weel at this point. I had a little grin at the "whose scale\what weight" issue. On the 4th week of John's rad tx, he weighed 152 on our scale at home on Mon. nite, 157 on the rad.dept scale on Tues. and 160 1\2 at the oncologist's on Wed. One day at the rad dept., he weighed back in the rad waiting room and then 35 min later on the scales down the hall in the Doc's exam room-3 lbs difference between those 2 scales! He just chose to believe the reading he liked best. Have a good weekend . Amy

Hope everything cont to go well.Jerry just came out of the hospital Weds.He was in 15 days.Rad is finished and chemo is on hold for now.He had a staph infection in his port and it was removed,plus dehydration,kidney failure.In the last 2 weeks he has recieved 4 units of blood and enough IV antibiotics to kill every germ on earth.Good luck and I hope you have a wonderful weekend.

Hi people,
We all seem to be at about the same level. I have had eight radiations, taste issues have started and the Ist Chemo on Monday left me feeling icky but not too bad. I was given a steroid, Compazine and Ativan. The Ativan works well just sends me to lala land I am not too sure what the other stuff is doing. I feel bloated. One little hiccup my front ttoth chipped today so I do not know if I can get that dealt with or have to wait. I know I am right at the start of all this and I can only take my hat off to those of you that have made it through..heres counting the days....

Hello Gail and Barry...just wanted to let you know that there is a fellow Hopkins patient out here. I had my neck disection on July 18, 2003 and finished my radiation treatment October 31 (Haloween, thought that was appropriate for how I felt)...you are coming up to the rough part of the road but you are in great hands at Hopkins and they'll take good care of you. Oh the memories of driving down into that parking lot every day....hang in there, you'll be fine. Wish I would have had a peg...lost 50 pounds...sounds like you have everything planned. Be glad to answer any questions you may have...best of luck....Gary

Hi guys,

Just a little check-in -- still plugging along. Barry is up making himslef a smoothie with chocolate Boost Plus and French Vanilla ice cream, also 2 tbsp of coconut milk (megacalories) -- he is keeping a food and water log today as yesterday he realized he didn't meet his water intake "prescription" nor as many calories as he probably should eat (now while he still can). Neither of us are big eaters normally and it was hard for him to force all those heavy foods to gain weight -- Now his body wants to get him back to his nice "perfect" weight which unfortunately is 12-14 pounds below his current weight.

Major symptoms are an intermittant sore throat -- he has a base of tongue tumor so that area getting hit hard -- which so far can be relieved with mouth rinses, and (as he describes) a weakening of the taste of some things. However sweet things still taste good at this point. However, obviously this is all going to get a lot worse over next few weeks. His energy level is good and he is using his Thera-bite and mouth opening fine. Trying to rest some today for another week-- argh!

Gail

Enjoy these moments and remember them. Thinking of you 2.

Just keep doing what you're doing, Gail and Baryy, sounds like you are doing great. Who knows, maybe Baryy will be one of the lucky ones who has an easy time overall through the whole treatment. Definitely enjoy the sweet stuff while you can though!