Posted By: SandySt. Amifostine - 04-25-2009 01:11 AM


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.
Posted By: Brian Hill Re: Amifostine - 04-25-2009 01:18 AM
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.
Posted By: Markus Re: Amifostine - 04-25-2009 02:29 AM
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!



Posted By: SandySt. Re: Amifostine - 04-25-2009 02:34 AM
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.


Posted By: SandySt. Re: Amifostine - 04-25-2009 02:37 AM
Markus:
That's a great idea. Thank you

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

Sandy
Posted By: Markus Re: Amifostine - 04-25-2009 03:08 AM
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







Posted By: Pete D Re: Amifostine - 04-25-2009 04:52 AM
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
Posted By: Brian Hill Re: Amifostine - 04-25-2009 05:20 AM
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.
Posted By: AmyK Re: Amifostine - 04-25-2009 03:45 PM
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.
Posted By: SandySt. Re: Amifostine - 04-25-2009 06:00 PM
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.



Posted By: SandySt. Re: Amifostine - 04-25-2009 06:07 PM
Markus:
Thank you for your reply. Of both optins, I thought Tempol would be available since the study was 2005. The mounse study is the info I also got off the internet.

Other interesting info I learned (as you can see in my other post) is investigation into electronic stimulation similar to acupuncture for salivary glands.

As some of you have guessed, I'm a research hog. Some info pans out and some doesn't. I enjoy doing it, and it relieves at lot of stress.
Posted By: Markus Re: Amifostine - 04-25-2009 06:42 PM
I am glad you specified that this is a source of relief. Especially if you delve a bit deeper....... imagine how they measured the saliva production in mice??!
Often however, people tend to grasp at straws and drive themselves nuts with all the crap that you find on the net or worse delay standard treatment.
Clearly, loss of normal saliva production and types is a problem. .. but as Brian has pointed out, you have to be around to be able to complain. And that would be a good thing!
Beside chemo protection and stents during radiation there is not much you can do during treatment and this may not be all that relevant anymore give the targeted radiation delivery these days (except perhaps for special cases).

Keep researching!!!

M





Posted By: SandySt. Re: Amifostine - 04-25-2009 07:25 PM
Thanks Markus.
Personally, I think I'll be okay. The right side salivary gland under my chin should be okay as it will receive a lot less radiaton.

Thanks for not critizing me for my research. As most peple like to feel as if they're are in control of a situation, doing reseach helps me to feel that I'm being proactive.

Thanks again
Sandy S.

Posted By: Eileen Re: Amifostine - 04-25-2009 07:39 PM
Sandy,
I'm surprised no one mentioned this. I took Salagen during radiation and for several years afterwards and do have some saliva, albiet not real watery. I had the same XRT radiation in 1997 that Brian had and since I had unknown primary, they fried me from my ears to my armpits. The only side effect I had from the Salagen was perspiring heavily for about 5 minutes, 30 minutes after I took it. It was well worth it to not have the dry mouth that Brian has. It also has another name that fails me at the moment.

I also have an electonic device that I used at some point after the radiation was over. It too enhanced my saliva production for a while. Can't think of the name either at the moment(I'm packing for a trip). They used it for Sorgens (sp) patients. I have no clue if they still even make it. Brian had never heard of it. I doubt I will have time before I leave, but I'll try to get you the name of it. Look into the Salagen.

Take care,
Posted By: Mark Re: Amifostine - 04-25-2009 09:09 PM
I was told that Amifostine makes scheduling a problem before rad. treatments. It has to be given in a narrow time frame before. In a typical day the waiting line would not permit reliable Amifostine delivery.
Posted By: Eileen Re: Amifostine - 04-25-2009 09:25 PM
OK. I'm home. I'm packed or mostly packed. Flying used to be fun. Now it is a challenge to figure out where to put what and get it all in one suitcase. If they keep it up, the luggage will cost more than the ticket.

Anyway, the device is called Salitron and was/is made by Biotronics. My RO got it for me. It was experimental on H&N patients in 1997. You can't use this until your mouth is healed. It delivers a small electric charge to the roof of the mouth for several minutes, like 6 if I remember. I think one used it daily 3 times a day. I have no literature on it that I can find. I stopped using it when it no longer had any noticeable effect which was after a few weeks.

Check out the Salagen. That is probably your best bet for the least sdie effects for the moment. I do not need a bottle of water at all unless I'm taking a lot.

Take care,
Eileen
Posted By: SandySt. Re: Amifostine - 04-26-2009 03:52 AM
Thank you to everyone who replied. It was a great discussion.
Sandy S.
Posted By: LindaNIH Re: Amifostine - 03-09-2010 02:35 AM
Sandy,
Information on the current clinical trial using Aquaporin gene therapy for radiation induced xerostomia can be found at www.drymouthstudy.com . It's a beginning Phase 1 trial but is showing favorable results.
Linda
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