ethyol injections to save salivary glands

greg from pa
greg from pa Member Posts: 86
edited March 2014 in Head and Neck Cancer #1
Hi, I am currently in the early stage of chemo and radiation treatment for base of tounge c w/lymph metastisis.My wife suggested to the radioligist that we use ethyol to save the salivary glands.(she works at a hospital and speaks with many involved).Has anyone had any experience with ethyol? has it helped them? what kind of side effects did you experience? Thanks alot PA greg

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Made it Half Way
    Greg,

    After hearing differing opinions from two different oncologists, I decided to try the amifostine injections. Injections started in the backs of my arms (two injections in one arm one day, two in the opposite arm the next). When I developed a rash-like reaction, we added injections to the stomach into the mix (sounds bad, but it was just like the arm injections, no worse). Half way through, my doc ended the amifostine for me, because the reactions increased in severity (even though I was taking Benadryl, rashes got worse, and did not fade - he was concerned about the possibility of anaphalactic shock). I never had problems with my blood pressure.

    I'm 3.5 months out, and have decreased saliva - I have to have water with me at all times, and need to drink a lot to eat. I do feel, though, that my level of dry mouth is not nearly as severe as many. I do produce saliva, just not enough at this time (I have made progress, and expect to keep improving).

    If I had known the outcome ahead of time, I would still start the injections. Good luck.
  • staceya
    staceya Member Posts: 720
    #3
    Pam M said:

    Made it Half Way
    Greg,

    After hearing differing opinions from two different oncologists, I decided to try the amifostine injections. Injections started in the backs of my arms (two injections in one arm one day, two in the opposite arm the next). When I developed a rash-like reaction, we added injections to the stomach into the mix (sounds bad, but it was just like the arm injections, no worse). Half way through, my doc ended the amifostine for me, because the reactions increased in severity (even though I was taking Benadryl, rashes got worse, and did not fade - he was concerned about the possibility of anaphalactic shock). I never had problems with my blood pressure.

    I'm 3.5 months out, and have decreased saliva - I have to have water with me at all times, and need to drink a lot to eat. I do feel, though, that my level of dry mouth is not nearly as severe as many. I do produce saliva, just not enough at this time (I have made progress, and expect to keep improving).

    If I had known the outcome ahead of time, I would still start the injections. Good luck.

    I started with amifostine IV
    I started with amifostine IV (Not Injections) run over about an hour, 500 mg.
    After a week of fevers and rashes, brought the dose down to 400mg ( I am very small anyway,so we figured the dose could be smaller)I was able to tolerate the rest of the injections, with minimal discomfort. The census is out on whether or not they are helpful, but I wanted to do everything possible. I do seem to have a good amount of saliva, so I am hoping the amifostine worked.
    Good Luck
    Stacey
  • greg from pa
    greg from pa Member Posts: 86
    #4
    staceya said:

    I started with amifostine IV
    I started with amifostine IV (Not Injections) run over about an hour, 500 mg.
    After a week of fevers and rashes, brought the dose down to 400mg ( I am very small anyway,so we figured the dose could be smaller)I was able to tolerate the rest of the injections, with minimal discomfort. The census is out on whether or not they are helpful, but I wanted to do everything possible. I do seem to have a good amount of saliva, so I am hoping the amifostine worked.
    Good Luck
    Stacey

    amifostine
    tnx to everyone who posted a reply so far.Your info has helped alot. I am going to try the injections. If it helps at all it sounds like its a good thing. Greg
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Amifostine
    Hi Greg,

    I had daily amifostine (eythol) injections during my 35 days of radiation.

    I ended up having to stop around day 30 because I started getting high fevers and or low then high fever swings... I mean like all the way to 102+ fevers. Once I stopped the Amifostine, no more fevers and I finished my last few rads.

    I can only speak for myself, but I feel that it helped. I didn't see it immediately other than I didn't get the thick mucous or ropey phlegm. I was still pretty dry for several months though. But now I'm just over a year post treatment and have regained a huge portion of my salivary function the last month or so.

    I once could only form a little thick white sticky spit, that I couldn't spit out, LOL. I had to take a sip of water with nearly every bite of food.

    To now I can form actual clear watery saliva, and don't need water to eat anything (pretty much as before treatemnt)...

    Oh, I did also have a few other reactions. When you get it each day about 15minutes before your rads (that's the window of effectiveness). They would take my blood pressure. The Amifostine effects it, I think if you are either too low, or too high, they won't give you the injection.

    My other reaction was that it would leave a golf ball size (in area, not swelling) welt each day (mine were in my stomach around the belly button), so they would hit a different spot each day. These welts would itch and later dry out and remained kind of scaly for a few weeks after I was done with them.

    I think it was still a small price to pay considering, especially if indeed the did help me to retain any salivary function.

    Best,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    greg from pa said:

    amifostine
    tnx to everyone who posted a reply so far.Your info has helped alot. I am going to try the injections. If it helps at all it sounds like its a good thing. Greg

    The only thing is, you can't really tell if they did or didn't help other than our results. It also isn't something that you really notice for a long time post treatment.

    Other than with me, like I said I had no mucous or thick stringy phlegm. I have also regained a huge portion of saliva compared to when I finished a year ago.

    So in those aspects, I can only presume that the Amifostine did help me.

    Best,
    John
  • Greg53
    Greg53 Member Posts: 849
    #7
    Skiffin16 said:

    The only thing is, you can't really tell if they did or didn't help other than our results. It also isn't something that you really notice for a long time post treatment.

    Other than with me, like I said I had no mucous or thick stringy phlegm. I have also regained a huge portion of saliva compared to when I finished a year ago.

    So in those aspects, I can only presume that the Amifostine did help me.

    Best,
    John

    Newbies Read This
    Here is a suggestion for any newbies that might read this.

    I wasn't aware of Amifostine. But if it helps just a little I wish I would have known about it. Anyone just starting rad might want to ask their doc about this. I know I would if I was just starting out. By far and away the mucus and phelgm issues were the abosolute worse for me and still are. I lost a total of 50# but I lost 30# the last 3 weeks due to heavy phelgm inducing a gag reflex and casuing me to throw up all my food. I could not keep any food down during those weeks. It was misereable. And dry mouth and hacking up luggies is still on my agenda.

    If it works a little and you have similar symptoms as mine, you might want to ask about it.

    Positive thoughts going to everyone!
    Greg
  • tonyanddenise
    tonyanddenise Member Posts: 70
    #8
    Greg53 said:

    Newbies Read This
    Here is a suggestion for any newbies that might read this.

    I wasn't aware of Amifostine. But if it helps just a little I wish I would have known about it. Anyone just starting rad might want to ask their doc about this. I know I would if I was just starting out. By far and away the mucus and phelgm issues were the abosolute worse for me and still are. I lost a total of 50# but I lost 30# the last 3 weeks due to heavy phelgm inducing a gag reflex and casuing me to throw up all my food. I could not keep any food down during those weeks. It was misereable. And dry mouth and hacking up luggies is still on my agenda.

    If it works a little and you have similar symptoms as mine, you might want to ask about it.

    Positive thoughts going to everyone!
    Greg

    much appreciated

    much appreciated
  • greg from pa
    greg from pa Member Posts: 86
    #9
    so far so good with the
    so far so good with the ethyol. I am only 7 days into 36 treatments. I hope to be able to continue with it. Is it helping? I don't know I have nothing to compare it to (without). tnx for all the input. greg
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    greg from pa said:

    so far so good with the
    so far so good with the ethyol. I am only 7 days into 36 treatments. I hope to be able to continue with it. Is it helping? I don't know I have nothing to compare it to (without). tnx for all the input. greg

    Working or Not
    Like mentioned above...you may not gain the most knowledge if it really did much for you until several months post treatment.

    JG

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