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Re: Newly diagnosed Stage IV, just started Dacarbazine – Im …

    Fairygirl
    Participant

      Initially 5 years ago, i was treated at The Alfred Melanoma unit in Melbourne.  After being diagnosed Stage IIc, with extremely high risk of recurrence and about 44% chance survival 5 years, they sent me away and told me to see a Derm every 3-6 months.  No scans, no SNB, no nothing! 

      I went away, did my own research and found out how serious this really was, found this board, and eventually got onto a Melanoma Oncologist in Melbourne called Dr Phillip Parente (recommended by a lady Alison on here).  I have seen him privately over past 3.5 years, developed a good relationship and trust with him, and have always felt very confident in his decisions regarding my treatment.  He works at The Box Hill Hospital (thats where Im receiving chemo) and doing all blood, scans, etc.  and also seeing him regularly in his suites for check ups etc.

      I dont think you understood my message properly, or moreso my message probably didnt make sense!!   I am on the current BRAF Trial, PROBLEM IS I ended up on the Dacarbazine arm unfortunately :-(   so there is NO WAY of me getting hold of that new drug R05185426, until the Trial ends and it is released.  Because i have stayed on the trial and am following the requirements of it (extra blood tests, questionaires, etc etc) when the trial ends, I will be given the drug first and free of charge on 'compassionate grounds'.   Only problem, no one knows how long away that is???   I MUST STAY HEALTHY till then!   Also, just cos ive started on the trial, it doesnt mean i am stuck on the Dacarbazine (only committed to first 2 rounds i think).  After first scan, if there is evidence of further spread, then i am off it immediately and my doctor has mentioned that he'd probably start me on Fotemustine. I am reassured that this definately will not wreck my chance of receiving  the R05185426 when the trial ends.

      I would really appreciate some info on other Melanoma Specialists all over Australia (even world wide) If being in Melbourne (or Australia even), limits my choices of treatments available, then I am prepared to move anywhere. 

      Thank you so much James for taking the time to write to me, I feel a little better this morning knowing that Im NOT alone in this, there are so many of us going thru this challenging scary journey.  I think ive found myself another special family :-)  Simmy xox

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