Amy -
Perhaps the gorilla in a nurse's cap should be the cover picture for the chapter on caregivers in the Oral Cancer book Tom and Charlotte are preparing? JaneP

Oh, how I really needed these new posts! We went to his radiation today and the doctor said he only has to have 30 treatments total and since today was #15, he is half way thru the Tx! My son did not seem to be as overjoyed as I was about this. He was really tired, feeling down but I'll be back at his house this afternoon after he naps, and am going to put on my best "Mom from Hell" hat. I love the idea of a gorilla in a nurse's cap! Thanks, everybody!

Anne-Marie,

When I first read your post about nausea, I didn're realize your son was taking Amifostine. It's amazing he has gotten halfway through his treatments with as little vomiting as he has given that he's taking Amifostine. It made me vomit almost every single day I took it. Just be sure to give him lots of fluids so he doesn't get dehydrated. It also helps flush the amifostine out afterwards.

As for being the "mom from hell", he's lucky he's got you. All I had was my husband who didn't work all that hard to encourage me to keep records, or keep down calories,it was me alone that kept up with that pretty much!

Nelie

Nelie -
It really helped to know about your experience with Amifostine. After todays shot plus radiation, plus an appointment with psychologist for mental evaluation as part of his appication for disability benefits, we came home (his house) and he vomited again, but it was just once and I stayed until it seemed there would be no more and he was able to fall asleep. He's also more willing to keep records, especially after I told him what I learned here and I printed out comments from the "getting through it project" on record keeping. I am so grateful to everyone.

The "Mom from Hell" now has a "twinkling halo cap"--good for you Anne-Marie!! Amy

Dear Anne Marie, As CG to my 41 year old daughter with SCC lateral tongue (surgery 10/16, mod rad neck dissection, 1 positive lymph) and had her 10th IMRT treatment today I can completely empathize. She has Amaphostine before ea tx and gets horribly nauseated, in fact she's still throwing up at 6pm tonight. She's on Kytril, Ativan, Marinol & she still vomits in the car on the way home plus throughout the day. They're going to change her to Anzemet (from Kytril) on Monday along with the other 2 meds plus one of those seasick patches that you put behind the ear when you go on a cruise. If this last cocktail doesn't work the med oncologist is considering discontinuing the amaphostine altogether due to the strain on her overall health. As others on this board had noted amaphostine is REALLY hard to deal with because of the severe nausea and only a selected few make it through the entire regimine. My daughter is now entering the mouth pain stage (all her taste is gone) and she can barely swallow so this miserable vomiting and nausea all day long is a drug side effect she may no longer be able to tolerate. By the way, my daughter also has thrown a few tissy fits at me, but I chalk it up to how awful she's feeling & try not to take it personally (it's hard!). And I keep meticulous notes as to what goes in and what comes out - the doctors thank me for it! Hang in there = I'm right there with you! Bonnie "Worried Mom"

Oh Bonnie - I do hope that your daughter's new "cocktail" gives her some relief. When my son first started the IMRT he was on compazine for nausea to which he had a reaction which made his tongue go into spasms and he was taken to the emergency room. THey gave him two shots of benadryl and they said he could take benadryl for that type of reaction. Now, he's on trymethobenzamide for nausea. I'll certainly keep in mind the other meds you mentioned in case he has to switch and the seasick patch is something I had not thought of. My son also has the mouth pain and lost his sense of taste and the things he can eat change all the time. I've learned to only buy small quantities of what he asks for because chances are, he won't want it the next day. I'll be thinking about you and hoping your daughter gets some relief. Thanks so much for your input. It really helps.

Hi Anne-Marie:
I was on Amofostine throughout my treatment (7 weeks) as well. They started the Amofostine in week 2, I was going through chemo at the same time and handled it all until I hit week 6.
I think the things that helped the most with keeping that dreaded nausea at bay was the Zofran and staying well hydrated.(completely agree with Stoj & Nelie) Even when the nausea started, it was only a couple times immediately following treatment and then I could doze off, feeling better, (well, at least no nausea) when I would get up.
David & Stoj made me laugh about the "little white lies" to my wife about my intake. She would lay into me good about eating and taking fluids into the tube. Make him keep those records but remember, "the scales don't lie".
BE THAT MOM FROM HELL/GORILLA....LOL

Thanks, Steve - We are going to ask about the Zofran when he goes back on Monday to resume the Rad treatments and Amosfostine. Doctors gave him a break for the Thanksgiving weekend and yesterday he was feeling better. He's been eating ok too, so I am encouraged, but I'm getting psyched up for whatever happens next week and confident that we'll be able to handle whatever comes our way. Having this OCF site to come to has really made a difference.