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looking survivors

ameerz
ameerz CSN Member Posts: 3
edited March 2014 in Skin Cancer #1
my husband has IV melanoma. He has had his lymphnodes removed and is taking high dose interferon. I'm looking for someone who taken this treatment before.
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  • sissy515
    sissy515 CSN Member Posts: 1
    #2
    Dear AMEERZ, I was on interferon for 1 year & it was the pits, but it does end. You learn to schedule your daily activites around a needle. The 1st couple of months were the worst. I was nauseas a lot, never vomiting. There were days I put the kids on the bus & got back in bed.I was not able to work at all while on treatments, but I did function & was still able to take care of my family. I started Sept 2002 & by Feb 2001 I had had enough of feeling bad so forced myself to get out on my good days. I also planned for the bad days. I met them head on & did not let them take me by surprise. I planned quiet activities so I did not feel like they were robbing me of the day. The worst part for me was after 1 year of treatment 6 months later my melonoma returned. So I guess it didn't work for me. I have now been clean for 8 months with no treatments of any kind. My family went on as normal which helped me get on as normal. They did all shave their heads so we looked like a unit. Thankfully I only had boys. Best Wishes
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  • gnail
    gnail CSN Member Posts: 35
    #3
    sissy515 said:

    Dear AMEERZ, I was on interferon for 1 year & it was the pits, but it does end. You learn to schedule your daily activites around a needle. The 1st couple of months were the worst. I was nauseas a lot, never vomiting. There were days I put the kids on the bus & got back in bed.I was not able to work at all while on treatments, but I did function & was still able to take care of my family. I started Sept 2002 & by Feb 2001 I had had enough of feeling bad so forced myself to get out on my good days. I also planned for the bad days. I met them head on & did not let them take me by surprise. I planned quiet activities so I did not feel like they were robbing me of the day. The worst part for me was after 1 year of treatment 6 months later my melonoma returned. So I guess it didn't work for me. I have now been clean for 8 months with no treatments of any kind. My family went on as normal which helped me get on as normal. They did all shave their heads so we looked like a unit. Thankfully I only had boys. Best Wishes

    Sissy, do not feel bad. I had stage 3 melanoma and at the time I was advised away from Interferon. I tried to get into a clinical trial of vaccines but was disqualified. Three and a half years later my melanoma returns. Now I am faced with the feeling I wanted to avoid which is: "If only I had tried the...{Interferon in my case)." But it did not work for Maureen Reagan the Interferon spokes person. What an embarrassment that must be for Schering-Plough, the makers of Interferon.

    If anyone is looking for survivors who took Interferon...talk to the people on MEL-L. For some it worked for others it did not.
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  • MzKitty2
    MzKitty2 CSN Member Posts: 2
    #4
    gnail said:

    Sissy, do not feel bad. I had stage 3 melanoma and at the time I was advised away from Interferon. I tried to get into a clinical trial of vaccines but was disqualified. Three and a half years later my melanoma returns. Now I am faced with the feeling I wanted to avoid which is: "If only I had tried the...{Interferon in my case)." But it did not work for Maureen Reagan the Interferon spokes person. What an embarrassment that must be for Schering-Plough, the makers of Interferon.

    If anyone is looking for survivors who took Interferon...talk to the people on MEL-L. For some it worked for others it did not.

    What is MEL-L I start Interferon treatment Dec.26th. I've been told that the firsdt month may be enough...I'm not sure I could take a year of it
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  • hpydncr
    hpydncr CSN Member Posts: 13
    #5
    MzKitty2 said:

    What is MEL-L I start Interferon treatment Dec.26th. I've been told that the firsdt month may be enough...I'm not sure I could take a year of it

    Hello, The MEL-L is a list serve...daily communication via email from hundreds of melanoma patients. You can subscribe...no fee. by emailing: listserve@maelstrom.stjohns.edu In the body of the email type subscribe mel-l with your first and last name. IF you have a problem, write me at hpydncr@earthlink.net. Good luck.....Linda Talbott
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  • juanie
    juanie CSN Member Posts: 1
    #6
    I have been on interferon for over a year now. I give myself my own shots and am doing
    quite well.Interferon started Nov.2001 with heavy doses for a month and then 3xper week. 32 nodes removed with 9 cancerous..level 3+ and still here. My immunne system is weaker but I take care of myself and can't work right now. I am on maintainence doses now - half of regular amts.
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