• Rebecca68's Avatar

    Rebecca68 shared an experience

    Side Effects (Fatigue (tiredness)): Retired on disability due to fatigue. Also on Synthroid - the Yervoy killed my Thyroid.

    3 Comments
    • lynnluc's Avatar
      lynnluc

      You are approved for disability due to being stage 4, not due to the fatigue and a fried thyroid. Both of those are normal and acceptable side effects of immunotherapy. I also know of people now who were approved at stage 4, but have been NED for several years and were told they are losing their SSDI...which is awesome in some ways...the treatment worked! I am also stage 4 and NED for several years now.

      over 2 years ago
    • suebond's Avatar
      suebond

      I am Stage-IV, also went out on disability and I retired from teaching. I applied because of exhaustion and chemo brain and the way they affected my ability to do my job.

      over 2 years ago
    • lynnluc's Avatar
      lynnluc

      the stage 4 dx is enough (I think) to get your disability. They fast track us.

      over 2 years ago
  • Rebecca68's Avatar

    Rebecca68 shared an experience

    Clinical Trial (Yervoy/Nivolumab): Travel 3 hours each way to receive this clinical trial. I have been in the trial since August 2013. Infusions every other week.

    3 Comments
    • buffcody's Avatar
      buffcody

      It's not an easy path, is it? I'm glad, despite the nasty side effects, that you were able to find yourself on a clinical trial of a winner, whose effectiveness has now given the combo the reputation as the best out there. I started it myself last week after a return of the melanoma that had been more or less dormant since Yervoy alone treatments in 2012, undertaken shortly after my original Stage IV diagnosis. Even this early on, I'm experiencing debilitating itching, more intense than that I experienced with Yervoy alone, and I hope with this early problem that I will still be able to hang in on the treatment. I'm impressed that, despite the rough side effects, you have stayed on the therapy for two years plus. I can use some of your courage. Keep fighting the good fight!

      over 2 years ago
    • Terri's Avatar
      Terri

      Wow, I just went to a Melanoma Symposium through Angeles Clinic and the top Melanoma Dr.s said that was a real winner of a combo. They are going to try triple combos next and genetic testing to see if these drugs will work before we take them. Good Luck. I have been on Yervoy twice and my thyroid looks like swiss cheese!

      over 2 years ago
    • buffcody's Avatar
      buffcody

      Yervoy made my thyroid eventually die the first time I got it. So I understand your comment. The death was actually brought about through a cup of liquid iodine when no other measure would slow it down. Now my "thyroid" is an every day dose of Synthroid. At least Yervoy doesn't have a thryroid to play around with this time.

      over 2 years ago
  • Rebecca68's Avatar

    Rebecca68 shared an experience

    Procedure or Surgery (Simple removal surgery ): Diagnosed with melanoma in June 2011. Removed mole on my hip. Doctors said I was "cured." In June of 2013 tumor returned on hip. Diagnosed Stage IV metastasized. Told to get my affairs in order.

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    Rebecca68 started following

    User: GregP_WN