The road to NED (No Evidence of Disease)...

...Is a long and winding one. I lucked out the first time that things just 'went away' on their own. This 2nd time around has been a longer journey.  We're not quite there but getting closer every time.

I was doing the math (and I know I've mentioned this a bit before) but Feb 2012 was the last time I had clear scans.  And since then I've had:

- 1 ambulance ride (to urgent care for a blood transfusion)
- 1 blood transfusion (where I got 3 units of blood and was lucky that with the help of Zelboraf my hemoglobin held steady)
- 4 months of Zelboraf (where 1/2 my hair fell out and I had major sun sensitivity issues, and joint pain, and rash and...)
- 4 doses of Yervoy
- 1 major surgery to remove 8" of my small intestine and a monster tumor!
- 8 doses of anti-pd1
- 1 CT guided biopsy to get in to the anti-pd1 trial: ouch!
- 22+ doctor appointments
- 25+ blood draws
- 8 CT scans
- 4 MRI's (3 brain and 1 of my shoulders)
- 8 visits with the dermatologist (on Zelboraf I think I was there once a month)
- 7 EKG's (Zelboraf can cause some heart issues)
- 1 EMG for the tingling in my hands and a couple of visits with the neurologist
- 1 additional urgent care visit ('given my history'... asked me to come in vs wait due to tingling in hands)
- 4 acupuncture appointments
- and countless hours of anxiety, worry, side effects, etc...    

BUT - even with all of that - things continue to move in the right direction!

I know some of you have been waiting on results and I realized I didn't post them!  So sorry.  I had my doctor call me on Monday.  He reported nothing growing and nothing new!  Continue to be a responder so we'll continue with treatment.  Heading in tomorrow for dose #9!  Can't believe it's been 6 months already on this trial.  In the world of stage 4 Melanoma, 6 months can be a LONG time!  But things continue to look good!  So we'll take it!

On to the sad news of the week - Monday was a day for good news and bad news.  My uncle John passed away Monday.  I pray for strength for my aunt Cindy and the rest of my family members.  It's been an emotional roller-coaster the last few weeks between scans coming up, the news of my uncle, work schedules etc.

Thank you everyone for the continued thoughts and prayers!  I really do appreciate it!

- Posted using BlogPress from my iPhone

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  1. Condolences on the loss of your uncle. Glad this trial is still 'use-able!'

  2. Dearest Erin,
    First of all I am so sad to hear the passing of your Uncle. I can but imagine this difficult time for the whole family. My heart goes out to your aunt and the larger family.
    Nor, can I believe you have been on this trial 6 months!! Where has that time gone. Looking through the list of what you have endured is mind-boggling. Truly.
    What wonderful news - really wonderful, to read those letters NED!! So no.9 coming up!
    Lots of love to you brave girl - across the miles.

  3. Dear Erin , My sister was diagnosed with Melanoma stage 3c last July , she is currently on zelboraf. Last pet scan she was Ned now we are very anxious as we are waiting for the next pet scan. We live in a small island in Europe and we do not have access to Anti Pd1 that is really promising. I am constantly praying that soon it will be available to all Cancer patients in need of it. This evening I will light a candle and pray for you and all Melanoma warriors at the Providence Chapel in our Village. Erin I wish you good luck and may you beat the beast Melanoma