Amifostine (ethyol)

johnlax38
johnlax38 Member Posts: 136
edited March 2014 in Head and Neck Cancer #1
During my rads treatment I took two shots before they zapped my head called amifostine. I was curious out of the lot of us here, who all took this drug? Did you find it to be beneficial post treatment? I'm just curious because I think I only saw one person mention the use of the drug in a post somewhere.

Amifostine: http://www.ethyol.com/

ETHYOL® (amifostine) is a prescription drug given by injection prior to each postoperative radiation treatment session for head and neck cancer. ETHYOL is used to lower the rate of moderate to severe xerostomia (zee-roh-STOW-mee-uh) (dry mouth). It is used in patients receiving radiation therapy following surgery for head and neck cancer when the radiation area includes a large part of the parotid glands (the largest of the salivary glands).

Comments

  • stevenl
    stevenl Member Posts: 587
    #2
    Amifostine
    I took it for about 2 1/2 weeks but it started making me sick and I had to stop. Mine was given by infusion no shots. I am pretty dry but at least I was able to get some.

    Best, Steve
  • johnlax38
    johnlax38 Member Posts: 136
    #3
    stevenl said:

    Amifostine
    I took it for about 2 1/2 weeks but it started making me sick and I had to stop. Mine was given by infusion no shots. I am pretty dry but at least I was able to get some.

    Best, Steve

    I took it for 7 weeks out of
    I took it for 7 weeks out of my 8. It always made me very sick, nauseous that is. The last week I broke out in a full body rash so they discontinued the shots.
  • staceya
    staceya Member Posts: 720
    #4
    johnlax38 said:

    I took it for 7 weeks out of
    I took it for 7 weeks out of my 8. It always made me very sick, nauseous that is. The last week I broke out in a full body rash so they discontinued the shots.

    I took the whole course and
    I took the whole course and while I have nothing to compare to, have mostly normal saliva with a few dry episodes here and there. Does make you sick. I was on 500 for 2 weeks than decreased to 400 to finish out the course, which was 5 weeks. Rashes that persisted, fevers, body aches, nausea, low BP. Did mine via 1.5 hr infusion with premeds.
    (can't remember the premeds..)
    Stacey
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    staceya said:

    I took the whole course and
    I took the whole course and while I have nothing to compare to, have mostly normal saliva with a few dry episodes here and there. Does make you sick. I was on 500 for 2 weeks than decreased to 400 to finish out the course, which was 5 weeks. Rashes that persisted, fevers, body aches, nausea, low BP. Did mine via 1.5 hr infusion with premeds.
    (can't remember the premeds..)
    Stacey

    I also took it the entire time.
    I took a benedryl, and Tylenol before my shots as per my RO. I did have a rash a couple of times, but did not spike s fever. They gave my shots to the backs of my arms and man that hurt and burned. I was black and blue on my arms the whole time. I don't even want to know how bad my xerostoma would be if I didn't get the shots. My mouth is terrible and I am 15 months out. I went in to radiation down my left salivary gland. That is right where my tumor was so they removed that along with twenty three lymph nodes.
  • rush1958
    rush1958 Member Posts: 223 Member
    #6
    Amifostine
    I had a total five shots through a course of 33 rads. After each shot I had nausea and suffered some pretty severe fatigue. We discontinued the shots over the last three weeks of rads.

    My mouth never got terribly dry throughout the whole ordeal. My saliva function decreased, but never to the point of dry mouth. I don't know if the Amifostine is responsible or not. My radiation doctor said that it only helped 30% of patients and you wouldn't know if it was effect until after everything was done.

    Rush
  • Pam M
    Pam M Member Posts: 2,196
    #7
    I had to stop, too
    I started the injections, but doc stopped them when my reactions (rashes) worsened. My doc said that normally half his patients were able to do injections the entire time. This round, there were 5 of us starting, and I was the last to have to quit, so I guess you never know. Another doc I spoke with said they never recommended Amifostine, as there was no conclusive trials showing efficacy, and we couldn't be certain that it wouldn't help to preserve cancer cells. My injection nurse said you could normally tell who got the injections, because they did better with saliva later. 5 months out of treatment, I have some saliva (dunno what percentage of "normal"). I have to drink water whenever I eat, and get dry mouth from time to time. I have more saliva now than I did when treatment ended.
  • Scambuster
    Scambuster Member Posts: 973
    #8
    Too late to try
    Heard about it here about 3 months 'after' I finished treatment. Bought it up during a checkup with Chemo Ali. He sort of looked embarrassed, mumbled something, and changed the subject and then quickly finished our 'check-up'. Ker CHING$$$

    Scam
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi John




    I used it on my first treatment of radiation but not the second time, I do believe it helps as I have about 65% of my saliva glands still working and that is being treated with radiation twice as much as normal.

    All the best to you my friend
  • greg from pa
    greg from pa Member Posts: 86
    #10
    ethyol
    I am currently given ethyol prior to my rad treatment.I have 4 more out of 35 to go.I don't really have anything to cmpare it to .I have not had any of that real dark thick saliva some patients talk about. And while my saliva has decreased to a degree ther is still some there. The nurses are pretty amazed that I am still able to take the drug. They say most people don't tolerate it well after a couple weeks. Greg
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    greg from pa said:

    ethyol
    I am currently given ethyol prior to my rad treatment.I have 4 more out of 35 to go.I don't really have anything to cmpare it to .I have not had any of that real dark thick saliva some patients talk about. And while my saliva has decreased to a degree ther is still some there. The nurses are pretty amazed that I am still able to take the drug. They say most people don't tolerate it well after a couple weeks. Greg

    Never
    Did get any rad shots, period, and that was w/full H&N rads in 20 places/session. Until you mentioned this in your post, I was unaware that this was used.

    kcass
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    Daily Amifostine
    I also got the shots each day before my 35 radiation treatments. Each injection was in my stomach. The area would get a big red welt, the size of a golf ball in diameter. The after a few ays would dry out and itch.

    I finally had to stop after day 30. I started getting sever fevers, as much as 102.7 three days in a row.

    Once I stopped the Amifostine, no more fevers.

    John

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