My doctor refuses to do Amifostine. He says it's was a sorry day for medicine when Amiforstine was introduced.

What were the problems with this drug? Did a lot of people have problems or only a small %.

Also, has anyone heard of TEMPOL for protection against radiation damage?

Thanks
Sandy L.

Amifostine has some significant side effects as in serious nausea. Even if you get past that, it only works in a small percent of the people that take it. However it does work in some people as a radio-protective agent for your salivary glands. I didn't get it, but were I to do this again, I would see if I could tolerate it and be one of the lucky ones that it worked on. 10 years out, the xerostomia is having serious consequences with my ability to fend off caries, perio disease and more. While I am on top of these things, it is a never ending battle each dental visit to deal with things that are going south. Saliva and the enzymes in it would be really nice to have some of. But remember that I went through radiation BEFORE IMRT, TOMO proton, or other more targeted and salivary gland sparing techniques... so my perspective, given the kinds and amount of radiation damage today being lesser, may be biased.

My RO also would not hear of it.
It does depend on the radiation planning, that is to say what gets nuked and what not (IMRT). In my case both parotids apparently survived. (one got partially fried). However, the sublingual and submandibular glands are dead. This means that have saliva albeit "only" the watery type**. There are still dental issues, but I do not need to carry around water all the time and I can eat a slice of pizza without water. (potato chips are out).
My advice is to ask the RO (or the person doing the planning) to show and explain the radiation plan (contours).

Best

M

** note I am not complaining considering!

Brian
Thank you for your reply.
In my reseach, I've found two other drugs for treatment of dry mouth from radiation. Frankly, I'm not sure what they are. They may be gene therapy. Have you heard of either of these?

TEMPOL: This is an antioxident. I found research reports going back to 1994 and as recent as 208. They seem positive for some protection of salivary glands, but I'm wondering if it has been approved?

Second is a patent pending "method". Abstract: Methods are described for using an arginine depleting agent such as arginase and drivatives....protecton of normal tissues in cancer patients underdoing raditherapy...
Don't know the name of the "method." Patent title: Method and Composition for Protection Against Radiation. Inventor: Ning Man Cheng. USPC Class: 424 946. IPC8 Class: AA61K3846FI. I was just wondering what this is, and has it received it's patent.
Does anyone know how to research this. The Patent Office search has confused me.

Thanks
Sandy S.

Markus:
That's a great idea. Thank you

BTW. Who was you RO. I'm from VA also.

Sandy

Sandy
The tempol stuff is published in 2005. They describing a mouse model so I doubt that this is ready for human consumption.

The patent is interesting....
supposing (!!) that this works the problem is that you would have to apply the enzyme, arginase to the structure to be protected.
They apparently did work on cell lines in the patent..... Not exactly an organism.

More interesting is a real paper(s) where they describe inhibition of proliferation of cancer cells by the same agent (2007) (liver cancer). So I doubt that either of these are on the menu (or approved) for H&N cancer.

M

What about the physical stents used by M D Anderson?

An internet friend of mine had roughly the same sort of cancer that I initially had, a tumor on her tongue very similar to mine, and was treated at MDA, with IMRT and the dental stents. She reported very little loss of saliva.

http://www.mdanderson.org/departmen...p;pn=dc30f0bf-7545-11d4-aec300508bdcce3a

This is all very personal, and varies widely by the involvement/stageing of the disease. There really is no way to compare one experience with another person's in any really finite terms. Location of the disease, extent, stage, treatment modality all vary.

They didn't use stents at MDACC when I was there, and those are related to teeth not to saliva. Clearly targeted radiation many tines can be mapped around vital structures like the spinal column, vascular bundles, nerves, and of course salivary glands and other vital structures depending on all the things I mentioned above.

I took Amifostine. It is awful. I was sick everyday for two weeks and I finially said NO MORE. I should have quit sooner. I think 1/2 of the weight I lost was due to Amifostine. I was one sick little girl.
My MO was telling me the other day that acupuncture has shown to help with salava production. I don't know if he told me the numbers or not. It was just a very casual conversation. Told me if I was interested he could hook me up. He shares an office in a nearby town with an acupuntcerist. I'm thinking about giving it a shot.

Amy:
Thanks for the info. Interesting that you brought up acupuncture. I believe either Anderson Center or Hopkins is investigating a new acupuncture techique to help with dry mouth.
From what I understand it's called ALTENS using a Codetron. It doesn't use needles, but electrical impulses at sites to stimulate saliva.

Interesting, I'm looking into this in the VA area.