Hello, I am at ucla and have metastatic ss. I’ve had it about 10 years and started treatment in 2012. I used to come on here in the very beginning but ended up stopping and forgetting my pw i think people probably just assumed i passed. i am 27 years old and I honestly stopped coming here as my doctor adviced me not to since he says most success stories don’t make it to the net and that I shouldn’t look for the help here. For the most part he was right as I stopped coming on because I felt even coming in here wasn’t good for health as everyone’s response was loving but not very encouraging for someone who’s scared. I’m currently on high dose and it’s working again. Next step is
Keytruda with nexavar
votrient again he thinks we can get another year but worried about lung collapse
votrient with keytruda
And he’s talking about a new one for next year.
I went online to look at the drugs and got scared by nexavar and he seems to think it’ll buy me 5 years and not to listen to the people online saying it won’t because again most successful stories will not make it to the net he says. We have advanced sts enjoying life in nexavar and he seems more for it than against.
I also might be doing keytruda with ifos. I respond well to everything including votrient and so were thinking keytruda will work but who knows. I do love being at ucla I have felt save for the most part even during aggressive treatment. I’m currently working a lot during high dose ifos as I’m handling it well.