I will be starting 6-7 weeks of IMRT radiaiton to tongue and both sides of neck. They are going to treat me with a dose of amiphostine by IV before each treatment to preserve glands. Anyone have experience with this? I also have a major concern re: actual treatment. I can handle the mask, but they are making me hold a syringe in my mouth to hold my tongue in place which causes me to choke on my own saliva. I have to stay like that for 30 min. each treatment. I barely made it through the practice round. Has anyone else had to do this? Any tips? Thanks, Kim

Amiphostine should be given by injection, not IV -- accordng to Medimmune which manufactures the drug (and where my husband Barry's daughter worked, she got us a Medimmune book on administering the drug which contains lots of info.) IV adminstration was leading to a lot of severe blood pressure crashes.

My husband took amiphostine throughout his treatment, only skipping chemotherapy days because of risk of excessive nausea and a few other days because he felt "off" -- the drug (also known as Ethyol) can cause nausea and a drop in blood pressure, the latter not so much of an issue since it has started to be given by injection. Barry got total 500 mg, two injections of 250 in 0.9% saline, after each injection the site was treated with cortisone cream as anothjer side effect is a rash. (If the rash becomes generalized, the treatments should be stopped.) The injections are given 1/2 hour before the radiation. Before that you should drink 24-32 oz. of water starting 90 minutes before the injection to avoid BP drop, but we found later that 20 oz is probably enough (this becomes hard to do as your mouth gets more sore). You also have to take an anti-nausea drug 90 minutes or so before and what Barry had to take was Zofran -- expensive but, a lesser drug like Compazine did not work for him. He also took Anzemet a few times, it worked even better than Zofran.

The nurse took his BP before the injection and said she would not give it if his BP was below 100 (which it never was but on occasion close to that!) -- she then re-checked 15 minutes afterwards and also checked for rash or other reaction. She made sure the radiation machine was on time so that the amiphostine was given within the 30-45 minutes window where most effective.

Having said all that, at Hopkins most people are not able to take the drug all the way through -- apparently they get residual queasiness or a rash, or even severe vomiting. Most give up half-way. It is not an easy drug to take, Barry thought it the worst part of the treatment (other than the sore throat) and the worst part of the Ethyol was trying to drink all that water and not get sick , especially as time goes on (you can also drink other clear liquids or even eat Jello).

Our RO, who is an expert on amiphostine, says it adds about 10-15% improvement in salivary function so if you find you cannot tolerate it, it is not the end of the world. More benefit to salivary function (according to him) is derived from the treatment plan itself and whether you get IMRT or not.

In case you are wondering, Barry has very good salivary function 3 weeks' out from treatment so I guess the pain was worth the gain!

On your other question, Barry simply held his tongue in place himself (he had a base of tongue tumor and two nodes); they didn't put anything in his mouth -- but if you are choking you need to tell your techs as hopefully they have aother solution.

Good luck,
Gail

Kim, fwiw, I had amifostine by IV--but it was actually an injection into the IV tube that went into my port--preceeded by extra hydration-- for most of my IMRT treatment and had no problems. Other places they administer it by subcutaneous injection. They did monitor my blood pressure carefully both before and after and the rest is much as Gale said (the trickiest part in some ways was the timing thing and being sure the rad machine was running on time since sometimes they thought it was at the front desk of rad. medicine but then when I got over there, it would turn out there was a delay. The rad technicians were very good at actually getting me in ahead of other people waiting, though, the once or twoce that that happened).


I took amifostine for 24 of the 33 days of rad. Almost every day I took it, it ended up making me vomit at some point either right before or right after radiation. There were a few days when I was lucky enough to just feel nauseated. Almost 5 months out, I have some issues with drymouth but I do have some saliva. I'm not sure how much of that is from the amifostine and how much from the IMRT.

I also didn't have anything in my mouth to hold my tongue in place. I wondered about this because I'm not sure it was always in exactly the same place--but it's not like it could move around that much either, the way the mask fit. Anyway, the folks from Roswell Park didn't seem to think it was necessary--I hope they were right!

Kim, if they are adamant about you holding something in your mouth, ask them if they will hook up suction for you. Perhaps a yankauer suction mouthpiece would work instead of the syringe. There has to be a way to do this so you are comfortable and they are able to get the radiation in the right place. They just need to be a little creative!
Andrea

Thank you for all the info. My oncologist told me that only 5% of people had a difficult time with amiphostine, but it sounds like most people do. I'm going to give it a try with Zofran and addition fluids administered. How do you suction while receiving treatment? That would make all the difference I think. And I will definately ask about the suction mouthpiece. What is it? The people on this forum are the best. What a great resource to have others with experience. Love to all of you.

I think it's way more than 5% that have some sort of difficulty with Amifostine but it probably depends on where you set the bar for difficulty. Just be sure they keep checking your blood pressure. Good luck with the mouthpiece thing...Nelie

I am getting ready to go for my mapping appt later this week, and I have asked for Amifostine as part of the treatment and they said sure, we could do that. My only concern, is they say its kind of painful at the injection point that it burns. Is this true??? Also, can anyone tell me how confining the mask is gonna be??? IMRT coming, and I am slightly claustrophobic and needing to know I can handle it.

I asked Barry and he said that well-administered, the injection site does not burn. It was painful once when another nurse gave him the jabs but that was like the sore shoulder you get after a flu shot (there was actually a bruise on one side) not burning. Our RO nurse was great, she had a very careful touch. Barry got the shot a few times in his stomach area when his arms were bruised.

He only threw up a couple of times and that's how we realized that days post-chemotherapy (he got carboplatin on Wednesdays) there was lingering nausea, especially on Friday when the 24-hour Anzemet he received with the chemo had worn off (he would get it at 2 pm Wednesday and get the Ethyol at 10:30 the next day) so Thursdays were usually OK but Fridays he had to be very careful about what he ate or drank. He tried Anzemet on Fridays and it worked better but he was still sick a few times. He told himself -- "this will pass in an hour or so, but dry mouth could be with me for a long time" -- that's how he psyched himself to drink the water and take the shot virtually every day.

He was still the Hopkins "Ethyol poster boy" apparently, no one else had tolerated it so well -- they gave him a Ethyol tote bag and drinking bottle (!) when he finished.

The mask can be claustrophobic -- Barry is also slighly so, the first few times he took Ativan (an anti-anxiety drug) and also, they played CDs for him during the treatment. He brought classical "blood and guts" music so as not to fall asleep -- thinking that if he did and woke up, for a second not knowing where he was, he would absolutely panic. Happily this never happened and after about a week he stopped the Ativan, and just laid there with his eyes closed concentrating on the music and keeping his tongue still!

Best wishes,
Gail

Kim, I got my injection in my port and I never had a burning sensation from the Amifostine.

The mask felt very confining at first but I got used to it. I did take an Ativan almost every day because they also help with nausea and I needed all the help I could get with that, but with the Ativan I got to the point where I would dose off during the radiation in the final few weeks.

Nelie

Thank you for all the info. I'm set to begin Amifostine and Radiation on Mon. (11/7) I will try to post my experiences in hopes that it will help others such as Elocia as they begin their journeys. Elocia-When do you start you treatments? -Kim