Hi all --

This is a new topic since the old one "About to start treatment" didn't quite fit anymore, since Barry started treatment yesterday!

Barry had his amiphostine, and had no problems with it -- of course he had drunk about 32 oz. of water in the 90 minutes beforehand like they recommend, and took a Zofran and 1/2 an Ativan. In fact, after the injections (2, one in each arm) his blood pressure went up very slightly (but still fine) which was a relief since BP drop is one acute side effect. Put cortisone cream on the two injection sites and no skin reactions. He did feel a bit queasy later in the day and took a Compazine; also one this a.m. He didn't get amiphostine today as he got his first chemo and they are trying to avoid his getting sick.

The radiation went OK -- yesterday it was long as they rescanned to check adjustments made Tuesday (rad oncologist said it was "perfect") and today it was only 20 minutes in and out. He put radiacare gel and biafine cream on neck afterwards and swigged some cold aloe vera. Barry brought CDs (classical blood and thunder) as he doesn't want to fall asleep -- afraid he will wake up and not know for a second where he is and have a panic as he's a bit claustrophobic. They pipe in whatever music you want...

The chemo went OK too, he fell asleep with his CD player and never turned a hair -- he had eaten a good lunch beforehand. Of course the nurse gave him an IV anti-nausea drug as the carboplatin is a powerful emetic. When he got home he felt a bit queasy so took a compazine. I think some of this is adjusting to the PEG as he felt a bit "off" in the stomach earlier in the week -- before treatment -- not really nauseous but burpy.

We got the thera-bite system and he's been using it, to get familiar with it and also for baseline.

Well, that's enough for now -- will update every so often and Barry will also chime in -- but right now he's trying to rest. We are both pretty tired as it has been 4 very long days this week...

Gail

Gail and Barry
I sincerely wish for both of you an uneventful, unchaotic, peaceful journey though your treatment protocol.
Best wishes to you both, we will be thinking of you.

MArica

Gail and Barry,
I too wish you both well. We are about a week ahead of you in treatments and are having similar experiences. Fun - not!
Peace,
Janet

Gail and Barry, Ditto the above sentiments.

Gail and Barry
Looks like I am just about on the same schedule as you guys. 3 radiations so far and first chemo on Monday. I am feeling pretty aprehensive about that. I was told I will return the next day for IV fluids to protect my kidneys. Where did you get the radiacare gel and biafine cream and what form or product is the cold aloe vera. I have had no information on any proactive techniques to reduce the effects of radiation. Seeing comments on this site you can bet I am going to ask on Monday.

Hi Paul. My rad nurse gave me all my creams and such. The Biafine, the Vigilon pads and later the triple antibiotic. The only thing I had to buy was the Miles Mixture and the 5% Cortisone cream for the itching. They even had the Ensure and the Boost but none was sugar free or they would have supplied that also.
Ask when you go. I am sure they will supply it.

Good luck Barry,
Barb~

Hello Gail,

Spunds like things sre progressing in a normal range for his treatment. I slso had Carboplatin
& Taxol for over a year.had no side effects other than being a littlr tird someday days. Nothing a good nap wouldn't cure.
Hoping he sails through his treatment with as little side effects as possible.
Take the advice of the above postings and use the search engine to look up just about anything on oral cancer you can think of. It will have been discussed in detail in the past. if not ask on the forum and someone with similier treatment should respond.
You are now part of one huge international cyber family with one goal of educating people about the diaease and another of getting the word out "Early Detection Saves Lifes"
The road ahead will be rough at times but many of us have traveled it and survived, He can to!!!

All my best, Danny Boy

Hi all --

We are chugging along -- Barry was somewhat more nauseous yesterday (after the amiphostine) -- kicked in later in the day -- just a bit queasy so he took some more compazine and sipped flat ginger ale. And ate lightly. I am going to try to find some ginger tablets as they work well for mild nausea without the side-effects of the other drugs. (I have some experience with this being a marine biologist by training and having to deal with students with sea-sickness -- if you want to talk about *nausea*!) -- it is also good to nibble on dry saltines -- of course this is out if someone has mouth sores -- to not let your stomach become empty nor over-full etc. Ginger ale (the real stuff with actual ginger in it) helps as well.

He is not sure how much of his nausea is the ethyol, how much the lingering chemo (although he is getting strong IV anti-emetic with his carboplatin and he's getting 6 small doses rather than 3 larger ones) and how much is due to having the PEG inserted Monday. He had his gall bladder out a few years ago and since then has found that his stomach is more sensitive to certain foods (esp. fatty foods) and more inclined to burp -- occasionally uses Prevacid for this -- and since the tube insertion has felt much more "gurpy."

I did have two questions -- any other tips for mild nausea and also, the relative effectiveness of Zofran, Anzemeb and Kytril? He doesn't have prescription coverage yet (on Medicare so their prescription coverage won't kick in until after his treatment is over) and we were a somewhat taken aback at the cost of these meds. Roche (Kytril) has a program for seniors on Medicare so if this works as well, we may contact them. We do have some Zofran for next week.

Well, a weekend off and a chance to catch up with all the garden chores -- miserably hot and humid (and polluted) so not anxious to go out!

Thanks to everyone for the encouraging thoughts,
Gail

Gail
Pete suffered from what they classed as intractable nausea, after trying all the usual Zofran, reglan , anzemeb etc we ended up with a compound suppository. That was the only thing that worked for him.
I will reiterate , nausea control is absolutely essential. The resulting dehydration and weekness can lead to a hospital stay and you don`t want that.
All the best
Marica

Hi --

Barry's nausea was mild, that is, no vomiting or even feeling like he was about to vomit -- but churny and queasy as if he *could* be sick to his stomach if the feeling persisted or got worse.

Today he is fine -- has been eating regularly. I did find some ginger tea and also, crystalized ginger at Trader Joe's. The latter is very strong, you only take a tiny bit and swallow it. It would probably not do for anyone with mouth sores but it is good for nausea. I think the ginger tea has possibilities.

Marica -- sounds as if your Pete had same stage and treatment as Barry is having (chemoradiation, no surgery). It is encouraging that he is doing so well now. I will keep your advice on the suppository in mind in case Barry does start to develop nausea that canno be controlled by oral meds.

Gail