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Synovial Sarcoma - Online Support Group

Oral chemo VOTRIENT


#81

Best wishes for you as well. Be prepared for your hair to turn white, wieght gain and super sun-sensative skin. My son enjoyed the freedom from IVs and long hospital stays for about 8 months and then the docs decided to give him a rest from all meds and his sarcoma bloomed over night in his lungs. GOOD LUCK!


#82

The FDA advisory committee is meeting on Tuesday March 20th 2012 to consider whether to recommend approval of votrient for patients with soft tissue sarcoma:

http://www.medpagetoday.com/PublicHealthPolicy/FDAGeneral/31703

If anyone wishes to view the real-time proceedings of the US FDA hearing, the discussion will run from 8am to noon (Washington DC USA TimeZone). Here is the actual site to log-in for free streaming audio and visual:
https://collaboration.fda.gov/odac320


#83

The FDA advisory committee is recommending votrient for approval. http://online.wsj.com/article/SB10001424052702304724404577293580517002056.html

Does anyone have an idea of how long the approval process may take?


#84

Its been approved :)

http://health.usnews.com/health-news/news/articles/2012/04/27/votrient-approved-to-treat-cancer-that-begins-in-soft-tissue


#85

I am on Votrient for reoccuring synovial sarcoma tumors. so far, good. my hair is turning white, a crazy side affect. taste buds distored, gastrointestinal distress sometimes, high blood pressure and sugar, so on pills for that. but not bad.


#86

Hello Atul,

Unfortunately I can be of little help, my husband did not get to complete a cycle of Votrient as our insurance company would not provide coverage and there were no clinical trials in our area. He passed away on September 30, 2011. His cancer had metasticized to his lungs and was wide spread by the time we discovered Votrient. He was able to take the drug for 1 month only due to a deceased patient's family donating an unused 30 day supply. His hair turned white, it seemed to us that we could see shrinkage of the visible tumors, but he had to discontinue use of the drug in June of 2011 and there was no way to be sure whether Votrient had any affect one way or the other. I wish you luck and will be in prayer for a positive outcome.


#87

Can you tell
Me how he is able to receive the drug through insurance? I was told it hadn’t been approved yet for sarcoma and would be 20,000’dollars wach time.


#88

Votrient is FDA approved for soft tissue sarcoma which includes synovial sarcoma. Different insurances may have different policy regarding coverage. I haven’t heard patients complain about cost so I am assuming most insurances must be paying for it… What kind of insurance do you have?
The following websites may be useful to you:
http://www.patientadvocate.org/
https://www.copays.org/


https://www.panfoundation.org/index.php/en/
http://www.needymeds.org/
https://www.pparx.org/


#89

Thank you for your helpful reply. I am very interested about finding out about votrient for my husband. He is due to start gem/ tax chemo this week. From what I have read, there are alot of side effects to this drug. I am wondering if votrient is only used after chemo has been accepted. Thanks.


#90

Votrient is commonly used for synovial sarcoma patients with metastases, generally more efficient than gem/tax. You may want to get a second opinion from a sarcoma specialist.