treatment started - what to expect next?

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  • Hondo
    Hondo Member Posts: 6,636 Member
    #22
    j3rey said:

    Amifostine
    Our radiation doc has not endorsed this either. Says it does not work. I will have to have a conversation with him, especially if you think it helped.
    Thanks.

    Hi Jen
    I used the amifostine on just my first time doing radiation but not on the second time, I can’t say if it works or not, but I have had right at 14,700rads of radiation and I have about 65% or more of my saliva glad still working. I don’t have enough spit to swallow when eating but I can go a very long time with out having to wet my mouth.

    All the best to both of you.
  • Pumakitty
    Pumakitty Member Posts: 652
    #23
    Skiffin16 said:

    Voice
    I didn't really lose it for any extended period, but I did get pretty hoarse at times...raspy.

    My wife probably wished I would have lost it at times, LOL.... I know I like to gripe and moan, which I did plenty of that...my outlet I guess.

    Once during the second big round of chemo, I let myself become a bit de-hydrated. Just wanted to sleep, more I slept, less I drank, more I wanted to sleep, worse I felt....bad cycle.

    I complained that she was making too much noise taking a fork from the drawer...she didn't let me get away with it though, especially seeing as she was trying to make something for me that I could eat....

    John

    Thanks
    That is how my dad voice is. Sometimes it is hard to hear him then it will come back all of a sudden.

    He had the de-hydration problem before he even started treatment. I think they scared him with the chance of kidney damage so he has really been drinking since then. They also give him extra fluid during treatment.

    Thanks for all of your advice.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #24
    j3rey said:

    Amifostine
    Our radiation doc has not endorsed this either. Says it does not work. I will have to have a conversation with him, especially if you think it helped.
    Thanks.

    Only from what I have experienced
    I can go only my experience, as I did have the Amifostine.

    It is a rough road, but no more than most of anything else I was going through. It's injected into your stomach every day just befoe the radiation treatments. It would leave a red itchy spot so they'd move to a different spot each day. Then eventually all of those dried out and I had a scaly dried stomach...

    Eventually (as I have read most do) I started having a reaction (around the 30th dose. I started getting really highe fevers at night, so I had to stop them.

    But for me, I can only think that they helped as I never got the thick mucous and have regained a big portion of salivary function.

    John

    PS Hi Tim, hope all is going well for you and your wife...looking forward to your next trip to Tampa.

    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    #25
    Skiffin16 said:

    Only from what I have experienced
    I can go only my experience, as I did have the Amifostine.

    It is a rough road, but no more than most of anything else I was going through. It's injected into your stomach every day just befoe the radiation treatments. It would leave a red itchy spot so they'd move to a different spot each day. Then eventually all of those dried out and I had a scaly dried stomach...

    Eventually (as I have read most do) I started having a reaction (around the 30th dose. I started getting really highe fevers at night, so I had to stop them.

    But for me, I can only think that they helped as I never got the thick mucous and have regained a big portion of salivary function.

    John

    PS Hi Tim, hope all is going well for you and your wife...looking forward to your next trip to Tampa.

    JG

    Hi John
    I was very lucky with the amifostine as I did not have any side affects taking it except for a lot of sore spots on my stomach. The stuff is very expensive but I believe it does help some in protecting the saliva glands.

    I will be leaving for vacation in a few days but this time going south to Honduras for some follow up treatment at USHA (routine maintenance), so if you don’t see me posting for a few weeks it is because I don’t have any internet service. I am hoping to make a Tampa trip soon I will let you know. All the best to you my friend and God bless you and your family.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #26
    Hondo said:

    Hi John
    I was very lucky with the amifostine as I did not have any side affects taking it except for a lot of sore spots on my stomach. The stuff is very expensive but I believe it does help some in protecting the saliva glands.

    I will be leaving for vacation in a few days but this time going south to Honduras for some follow up treatment at USHA (routine maintenance), so if you don’t see me posting for a few weeks it is because I don’t have any internet service. I am hoping to make a Tampa trip soon I will let you know. All the best to you my friend and God bless you and your family.

    Have Fun Down There
    Hoping you both have a chance to have a little fun in the old haunts.... Hope your son is doing well also, I forgot did he finally locate to Florida?

    God Bless You and Yours As Well~

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