Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

Mixed response to Votrient

My husband was diagnosed with metastatic synovial sarcoma in Sep 2015. At that time he had 11 + nodules in his lungs (they were all quite small) and his oncologist advised to wait until December to see how the nodules are developing. In December 2015 all the nodules have increased in size ( I guess no surprises there).

He started taking Votrient at the beginning of January 2016 and reacted to this drug amazingly well ( no nausea, weight-loss, vomiting). He just had a scan couple of days ago and the scan showed that all the nodules have disappeared or have shrank significantly in size ( to the point that they are barely visible) Except One. This one is sitting above his heart and tomorrow we are seeing surgeon to see if he can remove this. We'll be also seeing radiation oncologist to hear his opinion. I am interested if anyone else had a similar experience?

I am sure you can find plenty of people who tried votrient but I am not sure you will find many who had surgery after votrient. Please keep us posted. I'd like to know how it goes. It's great your husband responded so well to the drug. Good luck with the coming treatment whichever it is!

I have been on Votrient + TRC105 (clinical trial) for 1 year now and have remained stable. I have one nodule in my chest cavity wall and some smaller ones in my left lung. I to have felt pretty awsome compared to other chemo treatments and radiation. This is my 4th recurrence so i am not considering anymore surgery because i think it would comprose my way of living. I have a good quality of life and thats more than i can ask for considering i was diagnosted 4 years ago. I am glad to hear your husband is responding positive with treatment and like elodie said keep us posted! God luck and God bless!!

So glad to hear the votrient worked for your husband! My daughter is on a clinical trial for votrient. She is using it in conjunction with doxy, ifos and radiation. We just had her MRI and her tumor shrunk a lot more than her docs expected. She will be having surgery to remove her tumor in mid April. The important thing about votrient, as I’m sure you know, is to stop it at least one week before surgery and up to two weeks after. I hope they are able to get your husbands last one!

glad to hear it worked and how many cycle of votrient was he received, was it thro IV ?

Hi, happy to hear your husband is doing well on the votrient. My daughter did well also, but for one tumor n her lung, the doctor said was to big for votrient to stop it from growing and it was pressing on her heart. She had surgery and the tumor was removed by cutting out the top section of her lung. She over came the surgery miraculously. Good luck!!

Just wondering, where is/was your husbands primary tumor located? Has it been removed?

Hi Linda, I am glad to hear that your daughter has recovered from the surgery. My husband’s primary tumor was in his right knee and his leg was amputated in Nov 2014. We are grateful that Votrient is working but the only remaining nodule that is below his heart is not operable ( according to this lung surgeon ) we will seek second opinion though. We have also seen a radiation oncologist and they will be able to treat this tumor near his heart with Cyber Knife.

Hello Rumba,
I’m not sure where you are located but there is a very good thoracic surgeon by the name of David Schrump at NIH.