Radiation

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  • Vivi C
    Vivi C Member Posts: 70
    #22
    D Lewis said:

    Piece of cake
    Arrgh. Double post. I swear I didn't hit the button twice.

    Deb

    Thanks Deb! I think that I
    Thanks Deb! I think that I love you already :) I am not sure how this all works so email will be great. Do you have my email address? Sorry, I am pretty clueless as to how I even got here (but I am so glad I did). Thanks, Vivi
    I am in the Sacramento area and my treatment will be at UC Davis
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #23
    Vivi C said:

    Thanks Deb! I think that I
    Thanks Deb! I think that I love you already :) I am not sure how this all works so email will be great. Do you have my email address? Sorry, I am pretty clueless as to how I even got here (but I am so glad I did). Thanks, Vivi
    I am in the Sacramento area and my treatment will be at UC Davis

    Sweet.
    Look on the right side of the screen. Click on CSN Email in the pink box. That will take you to yours. See if my email came through.

    Deb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #24
    Vivi C said:

    Thanks Deb! I think that I
    Thanks Deb! I think that I love you already :) I am not sure how this all works so email will be great. Do you have my email address? Sorry, I am pretty clueless as to how I even got here (but I am so glad I did). Thanks, Vivi
    I am in the Sacramento area and my treatment will be at UC Davis

    Amifostine, Radiation & Cisplaten
    Hi Vivi,

    I had all three of these also...

    If you read above I had the Carboplaten with concurrent radiation and Amifostine. The Carboplaten was weekly for seven weeks radiation and amifostine were daily during that same time frame.

    I did have Cisplaten, Taxotere and 5FU prior to that (nine weeks in three week cycle). Mine was for right tonsil cancer, stage III, HPV+ with lymphnode involvement, no PEG.

    I didn't have a rough time with any other than the few weeks from the tonsils coming out, and the last few weeks of radiation and next few weeks after that.

    I did start having high fevers the last few days of radiation and amifostine and had to stop the amifostine for the last five days or so.

    I feel that the amifostine helped as I never had the thick mucous phlegm, and I have regained probably 80 percent plus of salivary function. That did come after nearly a year though. For the first several months I had hardly any saliva and minimal taste. Most of my taste is back as is the majority of salivary function.

    Best,
    John
  • Hal61
    Hal61 Member Posts: 655
    #25
    Vivi C said:

    Radiation/Chemo
    I am so glad to find a woman that is going through this. I've talked to men and their experiences were so so awful that I did not want to talk to anyone else. I have squamous cell carcinoma at the base of the tongue (left side) and one lymph node is also affected per the PET Scan. I start radiation and chemo (Cisplatin) on Monday 7/12. Can you tell me a little bit about your experience? I would really appreciate. I am so terribly scared. Also do you know anything about a drug called Amifostine that protects the salivary glands during radiation treatment and also the kidneys from the the cisplatin. Thanks Pam and may God Bles you and keep you healthy and strong.

    Vivi

    I am also getting a G-tube in 2 days. Is that the same as a PEG?

    Amiphostine
    Hi Vivi, welcome. I had thirty five rads, and three big gulp chemos with Cisplatin, and began with Amiphostine. Just to let you know, I and amiphostine didn't mix well. I'm in the minority, but my reaction started with the first injection. I took two and was sick most of the night each time, by-the-toilet all night sick. I thought everybody was getting sick until my radiation tech asked why I looked so beat, and then he told me to let my doctor know what the amiphostine was doing to me. My radiologist onc swithced me to another salivary protector, though amiphostine was her first choice and she didn't tell me some people have an immediate reaction.

    The injections don't seem to bother most, and I hope that includes you. But, if the amiphostine has an immediate ill effect, don't wait, let your doc know.

    best of luck with treatment, it'll pass and you'll feel better

    Hal
  • Vivi C
    Vivi C Member Posts: 70
    #26
    Skiffin16 said:

    Amifostine, Radiation & Cisplaten
    Hi Vivi,

    I had all three of these also...

    If you read above I had the Carboplaten with concurrent radiation and Amifostine. The Carboplaten was weekly for seven weeks radiation and amifostine were daily during that same time frame.

    I did have Cisplaten, Taxotere and 5FU prior to that (nine weeks in three week cycle). Mine was for right tonsil cancer, stage III, HPV+ with lymphnode involvement, no PEG.

    I didn't have a rough time with any other than the few weeks from the tonsils coming out, and the last few weeks of radiation and next few weeks after that.

    I did start having high fevers the last few days of radiation and amifostine and had to stop the amifostine for the last five days or so.

    I feel that the amifostine helped as I never had the thick mucous phlegm, and I have regained probably 80 percent plus of salivary function. That did come after nearly a year though. For the first several months I had hardly any saliva and minimal taste. Most of my taste is back as is the majority of salivary function.

    Best,
    John

    Thanks John for the info.
    Thanks John for the info. This is a wonderful site! I am learning so much. Lots that the doctor have not mentioned. Blessings to you,
    Vivi
  • Vivi C
    Vivi C Member Posts: 70
    #27
    Hal61 said:

    Amiphostine
    Hi Vivi, welcome. I had thirty five rads, and three big gulp chemos with Cisplatin, and began with Amiphostine. Just to let you know, I and amiphostine didn't mix well. I'm in the minority, but my reaction started with the first injection. I took two and was sick most of the night each time, by-the-toilet all night sick. I thought everybody was getting sick until my radiation tech asked why I looked so beat, and then he told me to let my doctor know what the amiphostine was doing to me. My radiologist onc swithced me to another salivary protector, though amiphostine was her first choice and she didn't tell me some people have an immediate reaction.

    The injections don't seem to bother most, and I hope that includes you. But, if the amiphostine has an immediate ill effect, don't wait, let your doc know.

    best of luck with treatment, it'll pass and you'll feel better

    Hal

    Thanks for the info Hal! My
    Thanks for the info Hal! My oncologist will not even consider amisphostine. Not sure what to do. Thanks for your encouraging words. I need them. God Bless,
    Vivi

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