Stage IV treatment confusion

Posted By
4/21/2014 3:14pm
View other posts by
Replies: 5

Is there a website or document that summarizes all the different treatments available (FDA approved and trials)?  I am so confused by all the names and abbreviations!  I find out tomorrow what my plan of action is for my treatment and want to be prepared with some knowledge on the different options I may be presented.  Thanks!

evleye - (4/21/2014 - 3:28pm)

Thanks, forgot to mention I am BRAF negative which makes it more confusing.


kylez - (4/21/2014 - 7:44pm)

Try clicking on "Understand Melanoma" on the blue bar at the top of this page, and then click on "Melanoma Treatment" at the top of the third menu column that pops up. Don't know if that's the level of information you need.

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

hi i just want you to know that although everything about melanoma is scary -there are people out there that have been there and learned as they went -lean on us -we are here for you -call us -ask us -the drs will tell you some stuff but the people that have lived it can tell you more about what you feel like or what to say to calm you down or answer weirds question s -also theses people have done things  trials and such that worked for them so the common rioute may not be wh at you need you may need a personalized route -ive gone the gammet with my odditites with the way drugs did or didnt work on me -i ve been stage 4 melanoma sight nonspecific since nov  2012  and have heard it all -ive been operated on left ovary removal -ive gotten lumps growing all over my trunk -ive now got two tumors in my brain and am getting cybr=er knife this week on those and am currently traveling every three weeks to boston mass to dana farber  cancer institute for a pd1 trial since july 2013  -that has been working with a 700 mile round trip every three weeks -itwas working til the brain thing popped up -but again live and learn and get thenm to get a plan and its not quite so scary -i trust the drs i have and they are AWESOME AT DANA FARBER -its aclinical trial thats working for my case -its amatter of what you r ok with -i was on zelboraf for 6 months and didnt do  well on that -side effects -i decided on immunotherapy  as this was the best chance for a long term help -not cure -but chance to keep it at bay longer -i wont say cure because they wont say it to me -so i go day by day and enjoy but im a spiritual person and i have cancer survivors in my family so i believe in a cure !!!!!!!!!!!!!!!!!!! I HAVE A NEW NORMAL BUT I LOVE LIFE AND I WILL BEAT THE BEAST the other thing is when i get down about stuff or worried -I THINK OF BUTTERFLIES AND RAINBOWS YOU CANT STAY UPSET IF YOU DWELL ON THE BEAUTY OF THOSE TWO THING S !!!!!!! PLEASE TRY THIS AND KNOW IM PRAYING FOR YOU WHEREVER YOU ARE IF YOU D LIKE YOU CAN EMAIL ME AND I WILL GIVE YOU MY NUMBER  PHONE -TAAKE CARE  AND LET OTHER PEOPLE HELP -GOD BLESS YOU CAN GETTTHRU THIS


evleye - (4/23/2014 - 8:04am)

Thank you for the encouraging response.  I saw the doctors yesterday and we are going to start HDIL-2 and Yervoy back to back.  I also started stge IV with an ovary and it is now in my breast.  Hoping I can "nip it in the bud" before the mets spread to more difficult areas.  Through this journey (since January 2014) I also had two kinds of thyroid cancer that needed to be treated first, so I am eager to beat the "black beast" finally!