Awhile back, I read an article on this site about Amifostine as a preventative measure for xerostomia.

I spoke to my husband's RO about it, and he dismissed the idea. I don't remember why. So, I plan to bring it up again at tomorrow's appointment.

I'm curious, for those of you who have finished radiation, do you think the Amifostine helped you? I'm wondering how hard I should push for this in light of the fact that they have told us there will be long term xerostomia.

Your thoughts would be greatly appreciated!

Margaret,
My father was able to take the Amifostine shots until the last 3 days of radiation. He had a reaction and they stopped the shots at that point. (The reaction was a rash on both arms) He was able to tolerate it alot more than most of the people you read about on this website. He did drink as much water as he could prior to the shots as hydration is really important. Towards the end of course it was difficult to drink water. His dentist tells him that he thinks he has less xerostomia than you would expect for someone who has went through this treatment but of course my Dad says his mouth is really dry. He still 13 months out of treatment sleeps with a humdifier and carrys a bottle of water with him most times but it is hard to know where he would be without the amifostine. I will tell you this that his RO dismissed the ideal as well and it was his MO that highly recommended the shots. Also the RO's nurse was highly supportive of them and said we should at least give them a try. I tried to do as much research on the amifostine as I could and from what I discovered it was at least worth a shot if you could tolerate them.
Good luck to you and your husband Margaret and please feel free to email me if you have any other question I would be happy to let you know my father's experience.
Kim

My husband took the shots too and after 2 wks had a rash so they stopped them shortly after that he ended up in the hospital. When he got out we tried the shots again without anymore rash problems. They all tried to tell us it was from the Amifostine but I could not find anything listing a rash as a side effect but there was one listed for the chemo he was taking. We opted out of chemo so he could stay on the Amifostine. He is now 3 wks post radiation. It was worth the shots since he does have some taste buds his dry mouth I'm sure would be worse too without it.

Caregiver to husband-Tongue and 1 node involvement.

My husband completed the entire series of amifostine last year and definitely thinks it helped him have less dry mouth and less thick mucositis. He took claritan to prevent allergic reactions and zofran to prevent nausea before each shot and drank ALL the water that they told him too - really important. I think it's worth it. Regards JoAnne

I had a bad raection after 7 treatments and was taken off. My saliva is back to about 85-90%. My docs attribute this success to the amil. Almost everyone gets the rash.

I too suggested this to my RO but he dismissed it. Why if this is helping are the ROs dismissing it? I would like to have taken all the opportuniies available to have as much saliva as possible. Does anyone know or have an idea as to why the ROs dismiss this?

Thank you, all, this is great feedback. Based on what I read here, I am going to keep trying to get him on the amifostine.

We meet with his RO later today and his MO on Monday. I'm getting the sense from the postings that I might be more successful waiting to talk to the MO.

Thank you for sharing your experiences with me,

Hi Margaret

The RO told me that it is a 50/50 shot as to whether it works or not. I had it for 6 of my 7 weeks of IMRT treatment, and I am now battling the dry mouth, so I can not imagine if I had not had the shots.

The worst side effect I had at first was the headache's. Then we had to stop it at 6 weeks due to the intense nausea.

I'd ask again!

Kevin

You need to be careful and not compare apple with oranges.
Not all IMRT radiation schedules are equal. In some cases one or both partoid glads are spared. If you talk the RO you should find out exactly how much of the maximum dose the gland(s) are getting (this and many other things should be charted in the IMRT plan anyway). If they are getting a low enough dose one or the other will survive/recover. This may be one reason, why some of the RO dismiss amifostine, the other may be side effects.

Talk to the RO!
a) are the glands likely to be non functional due to the radiation dose?
b) with the radiation dose they are getting could amifostine be beneficial.
c) if they are getting the full radiation dose IS amifostine still expected to be beneficial

Markus