Hi all,
My husband (51, nonsmoker, nondrinker) has stage II (T2N0M0) tonsillar SCC, diagnosed at tonsillectomy six weeks ago. He is starting IMRT tomorrow (35x) and will be receiving amifostine IV for as long as he can tolerate it. He will be pretreated with IV fluids, Zofran, and steroids before each dose of Ethyol, and has a port-a-cath to facilitate that.

I wondered if anyone has a daily log template they would be willing to share? I have read the posts on the "Getting Through It Project" forum where people describe some of their logs, and it would be great to actually see some of these (blank, of course). If anyone has a log they would share, I would so appreciate getting that in e-mail so I can figure out the best way to keep track of the days ahead.

I want to thank all of you who communicate on this board with your messages of hope and support and advice. I have been "lurking" on the site without posting for the last few weeks and have learned so much! Because of this forum and all of the terrific info throughout the site, we feel quite prepared as we start this journey tomorrow. Thanks in advance.

-Tricia

Tricia --

Medimmune wants Ethyol (amifostine) to be given by subcutaneous injection, not IV, since they had so many bad side effects with the IV delivery. One of the most scary was severe blood pressure drop despite adequate hydration, in some patients. Some went into shock, in fact.

Ask your docors about this right away -- "Ethyol by Injection" has been the slogan for amifostine for over 18 months now...

Gail

Thanks for the reply Gail. I did discuss subcu administration with the MO, but he said that it often causes cutaneous allergic reactions, sometimes severe enough that the patient has to stop the drug. He did spend a lot of time discussing the hypotension and nausea side effects, and that is why they are giving Mike a full liter of IV fluids in a fast push along with Zofran and high-dose steroids just before the 3-minute IV administration of the amifostine. But I'll make sure they are watching his vitals closely. I am of course very interested in Mike receiving the med in the least toxic way, so will ask once more this morning about getting the drug as an injection. The MO gave us the package insert to study and it mentions only a the 3-minute IV infusion as route of administration. I also checked the Medimmune site but couldn't find info on dosing by subcu injection. If you have a link that discusses this further, can you let me know as I want to be as well informed as possible. Thanks again for your reply. Every bit of information helps! -Tricia

Tricia, here is a fast start to your daily log: Get a 3 ring binder and some loose leaf note book paper and some tabs. Lable the tabs: Docs, nurses, and their ph numbers: appts for what and discussion there :list of current meds and what they are for;
A Daily chart of nutrition and fluids, temp, bloodpressure,bowel movements,pain,nausea etc. We set this up simply by drawing lines on the page vertically and horizontally and entered each item and the time it was done.[ 6 am- nutrition 475 cals. liquids 8 ozs water, 8 oz grape juice, pain med taken, bp 110\75, temp 97.6, etc: 10 am same routine, 2 pm same ].We logged into it anytime he did something along these lines. Either John or I make notes on the daily page as to what is going on and how he feels during the day. If he gets in trouble, all I have to do is grab that chart when we call or go see the Doc. to have a record of the preceeding days. [You can't remember it all} Think of it as punching a time clock for every part of a process. It will pay off in the long run to be very organized about this. If he loses weight over a month's period, you can look back and say "well, you only managed to take in 700 to 800 cals a day over the past few weeks, so we need to address that." It started off that I was responsible for the "journal", but John did not like how I was doing it, so he took it over after about 6 months, and now we have a cartoon sketch everyday along with the entries that are so important. But the entries are now in his words and I have a better insite into his personal journey thru this and he has a way to see that he has gained ground [or lost ground] Hope this helps, and I wish you both strenght and courage. Amy

Dear Amy,

That's a great help - thanks!!

Radiation treatment #1 went well today - and no problems whatsoever with the amifostine, so we are both thankful for that! I sure appreciate your quick and detailed reply, and will go put together a binder as you have described and get today's info down before I forget it all.

Thanks again,
Tricia