Synovial Sarcoma - Online Patient Support Group

Best Christmas Gift Ever!

I have been on Vortient since August of this year after being on the high dose Ifex for 7 months. I'm currently taking 600mg. per day after being reduced from 800mg, Some notable side effects have been low WBC's, slight headaches which have been intermittent, irregular heartbeat, slight joint and muscle pain, weakness/fatigue, change in the ability to taste food, loss appetite and weight and shortness of breath. Sounds bad...but it's all good!!

It's all good because I just received results from a CT scan to show my disease remains stable and there has been some shrinkage consistent with the response to treatment!

Hopeful and Thankful!!


Great news! Thank you for sharing! When will be your next scan?

That's GREAT to hear, so happy for you!!!!! I go for my next scan on 12/12/12. I pray I get good news too!!!

Oui c'est un merveilleux cadeau de Noël.

Pour mon mari qui a un synovialosarcome médiastinal et attend sa 3ème chimio de Yondelis, le scanner aura lieu mi-décembre. C'est toujours espérance et angoisse en attendant le rapport de scanner. Pour l'instant cette chimio l'a beaucoup fatigué et il ne veut plus sortir se sentant trop épuisé.

Enfin bon courage à toutes et tous

Wonderful news. I am so glad you found success with this drug! I hope you continue to see good results!

Thats awesome!! So glad you are doing good!!!!

Bravo! Bravo! Bravo! - Very happy for you and your family - such good news to hear! Congrats! and enjoy your holiday!


Great to hear Gina, my daughter is just starting on votrient, had to go off because of bad headache from high blood pressure. She will probably start taking it again Monday, if her Oncologist decides what to do about her blood pressure. Hoping the best for you and continue the progress.

I also had high blood pressure from the Votrient. My oncologist immediately placed me on a high blood pressure pill. I'm surprised they haven't done that for your daughter. The name of my pill is Lisinopril It appears to be working and I take my blood pressure daily and keep a record to see how I'm doing. The other issue is rapid heart rate. I just do breathing exercises to help with this. Hope your daughter gets better. There are means to control the side effects of this chemo. Stay hopeful!


Thank you all for your congrats. I get another scan in 3 months. I am very hopeful that my success with Votrient will continue. If not, I already have suggestions for my oncologists to consider...staying ahead of the game!!

Keep Hope Alive,


Congrats Gina, thats fantastic news. You're an inspiration to others and you just keep on going and putting this disease in its place.

May be starting Votrient (had two surgeries and doctor won’t operate again and cannot now since I had radiation). Did you have a lot of side effects?