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
Nexavar
Yondelis
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.
Your doctor is probably right that most success stories don’t make it to the net. It’s unfortunate because we need to hear them!
Nexavar is also called sorafenib. Here are some discussions on the subject: http://forum.synovialsarcomasurvivors.org/search?q=sorafenib
Nobody reported being a long term survivor on sorafenib here but it does not mean that such person doesn’t exist. Here is a case with a good response:
Unfortunately, it’s impossible to predict response and you have to play the lottery game. Your oncologist is giving you many options, which is great.
Good luck and keep us posted!
Thank you Elodie, yeah i have many options but its so hard picking one. do you know anyone who has used votrient two separate times? i was on it for a year but my lung collapsed so they took me off it and when they did i grew everywhere including new head tumor but luckily they took it out with clear margins but i still have lung. so he wants to put me back on votrient as he believes I’m a long term user for it but its scary about the lung collapse and thats why he wants to put me on nexavar because he says i should connect with that one and its reported less collapse. keytruda he seems excited about but me not so much as like you said its a lottery but i am excited to possibly do it with votrient or nexavar or my last rounds of ifos, were still discussing. also would you say yon delis is more a shot than nexavar first? for some reason ucla is avoiding that one for now but says if i really want it they can order. i know there are 2-5 year survivors on here and thats exciting. do you know if anyone has responded to keytruda longer than a year? thank you sorry for all my questions, iw ill totally post my situation later I’m just all over the place right now.
I can’t remember of anybody who used votrient two separate times.
The only person who reported a good response to keytruda here, didn’t have synovial sarcoma but thyroid cancer. Everybody else seems to have experienced aggressive growth during the trial. But according to a report that was presented at ASCO, there has been patients with synovial sarcoma who benefited from keytruda. I hope they will dig deeper to try to understand what makes a patient benefit while others have the opposite response. It may be interesting to use it during chemo though. May be if keytruda causes a growth spurt, chemo will take care of it?
If UCLA is avoiding yondelis, it may be because they had bad experience with it. My impression with yondelis is that when it works, it does beautifully but then, most of the time it doesn’t work.
I am not helping you choose, am I? It’s still better to have the embarrassment of choosing rather than no choice at all. Draw a dice if you don’t know how else to do it. But never regret any of your choice. All choices are risky. Good luck!!!
Hey Elodie, thank you for your help. I just got my treatment options (the list before was possibly)
Yondelis
Nivolumab and keytruda
Votirent or sorenifib
Olaratumab
I’m currently doing high dose ifos.
Hard decisions but he seems like they’re all promising except votirent he’s scared my lung will collapse and yondelis he doesn’t want me to be one of the non responders. its also exciting they all have hair lol.
So what’s your choice? If you pick Olaratumab, you will be the first one to try it here. You can be our guinea pig
Whatever you choose, good luck!!! I hope it works!
Lol thank you! I’m not sure which one and I have a couple months to think as I still have 3 more rounds but last scan show they’re dying. Also I’ve been on the keytruda trial for 1 week and then kicked out because right before that votrient collapsed my lung and then had massive massive growth I’m talking a tumor in the brainstem and lungs. Votrient always does this so anyone on it please beware. They took out brain stem with clear margins and my doctor wants to put me back on it but with nivolumab which is for head and neck soft tissues which is my primary. I might be nivo and keytruda and then yondelis it fails.
