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Re: Calling all Sorafenib/Nexavar users-Past and Present
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Re: Calling all Sorafenib/Nexavar users-Past and Present

› Forums › General Melanoma Community › Calling all Sorafenib/Nexavar users-Past and Present › Re: Calling all Sorafenib/Nexavar users-Past and Present

    • August 9, 2010 at 8:51 pm
    ed_CT
    Participant

      Jen,

      Sorry for the delayed reply.  The new board took me a while to get used to.   Had to get a username and password.

      Anyway – I was on Nexavar for almost 5 years.   I started with 2 pills 2X a day along with Temodar which I took once a month for a week.  After 2 years I went on the Nexavar exclusively.

       

      The major side effect I had early  with the Nexavar was a very itchy and tender scalp.  The only relieve I had was to soak it with cold water.   I discontinued use for a few days and when I went back on the drug it was much better.  One mistake I made was to try to "tough it out"   I waited too long after the first symptoms came to stop using it and then it took that much longer until I could start again.   I had a couple starts and stops before I got things worked out.   Over the two years the other side effects I had were diarehea,  I had to stop occasionally for this – especially if I planned on travel.  It also make my hands and feet sore and tender but not unbearable.   As time went on my symptoms got better or less noticable.   I lost most of my body hair although kept it on my head.  My hair also got curlier and lighter.   My blood pressure got elevated and I did sometimes have some breathing problems when I exercised.   Since I have stopped the drug everything is back to normal.   I also notice that since I have stopped, exercise is easier – I had just thought I was getting old.

       

      The good news is after this combination of drugs I'm cancer free.  I had been stage IV when I started (liver and neck mets)

       

      Best wishes – If you have any more questions let me know.

       

      Ed

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