Does anyone have any experience or knowledge of the success of Pilocarpine during or after radiation or Amifostine during radiation? or any other ways to preserve some salivary gland function?

My husband had amifostine before each radiation treatment. He is two and half year past treatment and I believe it worked. He does not have as much saliva as precancer, but he does not have to have a glass of water with him constantly as he did just after radiation. The amifostine treatments made him slightly nauseated, but the anti-nausea medicine helped and he never actually got sick.

Nannygranny,

You might want to do a search of the site...this topic has been discussed before. Since some of those posters may not see this, you could pick up some of the old posts and any information elsewhere on the site.

Hope it helps.

Take care,
Dinah

I asked my oncologist about Amifostine and he told me that no one in his care had been able to tolerate it (he's the dept. head at a large cancer center in the San Francisco bay Area). I will be getting IMRT which will spare 2 of my salivary glands.

Hi Gary, Before my husband started radiation we did research and he insisted on the amifostine, yet his Dr didn't want to give it to him for the reasons you mentioned. Dan got it ONCE he got so sick,and then with chemo it just got worse. Dan didn't do anymore treatments of it. He was on Cisplatin every three weeks and even with anti-nausea drugs he got very sick the first two days of chemo. Everyone is different though.
Julies husband did great on it I hear.
Good Luck Gary

I was prescribed Salegen during treatment and still take it twice a day. This medication is suppose to cause the saliva glands to produce more saliva. During treatment I was given Ethyol. My treatment consisted of radiation only. I had 40 treatments of once a day for 20 and twice a day for the last 20. I was given the Ethyol by injection instead of by IV. I was their guinea pig for this due to giving it by IV, which was the way they use to give it, made most patients very nauseated and caused most to vomit. Most people quit taking the medication. So far they are still using the injection method. There are side effects to this way also. I still have about 1/2 the saliva I did pre-cancer, I don't have to carry a water bottle every where I go now, like during treatment.

Mike D.
Diagnosed 06/2002 w/Laryngeal cancer, 1st stage

My daughter had Amifostine (ethyol) during her RAD treatments. It was by injection, not IV. She only used it about 1 week, but not because it made her sick. She was sick from a stomach flu and stopped all unnecessary medications until she got that cleared up. She was so sick (nausea & vomiting) from the flu that she was afraid to try the Amifostine again, just in case it would make her sick.
I guess I can't say for sure that the Amifostine didn't make her sick, but I think if it did, it was minor. The flu definitely was causing the worst of it.
It certainly can't hurt to try it. You will be monitored closely and it will be stopped if you get too sick.

Rosemary

I took Salagen tablets 3X's a day all through radiation and for several years after. I still have a fair amount of saliva, albeit thicker than before, and would have even more if the first surgeon hadn't arbitraily removed my submandible saliva gland for no reason at all. His philosphy was - 'it won't work after radiation so let's remove it'. Don't let that happen to you.

The only regular side effect I experienced from taking Salagen was heavy perspiration for a few minutes about a half hour after I took the pill. I too have no need to carry water bottle.

The only time I had a really bad side effect was on a day when the humidity was about 99% and the temperature 100 degrees. I who rarely perspires was sweating so heavily that I couldn't see. Once I stopped taking the pills, that problem went away.

I would strongly recommend taking Salagen or equivalent pills during and after radiation if you don't live in a very hot, humid environment. They are very tiny tablets so easy to swallow.

hi,
i have been taking 4 Salagen pills/day for a 18 months and haven't noticed any side effects. It seems to help me from drying out.
I crushed them for use with PEG, now I chew them. They taste like chauk.

cu,
larryb

Thanks everyone for all that information. I appreciate the replies. I am three weeks into radiation now and insisted on Amifostine, aka Ethyol. I get two injections daily, subcutaneously. I take an antiemetic and antihistamine first, but am not convinced I need either. I am tolerating it very well. Their big concern was an allergic reaction, but there hasn't been any. The skin turns pink at the injection site for a day or two - no big deal. Turned out Salagen wouldn't work because they were going to totally destroy my salivary glands. Apparently you have to have some salivary function for that to work. I still have some saliva at this point, so perhaps it's working. If it works too well, the radiation may have no effect on my chronic oral dysplasia, but I'm hoping for a cure of that also.