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Brand new Synovial Sarcoma diagnosis, looking for treatment suggestions


#1

Hello all,

I am so glad I found this community. I was diagnosed two years ago with Sarcoma, but was MISdiagnosed and just found out three days ago that I have Synovial Sarcoma. I am still in a little shock, and could have already been properly treated, but now have to meet with my oncologist on TUesday to discuss options.

I currently have large lung mets, one 10cm, and I am looking for the best option for treatment, considering the size of my tumors, and how advanced my cancer is. I see many here have tried several kinds of chemo and also Pozapanib etc. I don't know how many chances I have at a treatment that may work, so I am hoping to get some response, suggestions and hopeful thoughts and prayers.

Thank you in advance.

Kim


#2

Hi Kim. I'm very sorry you were not diagnosed properly. But it's not too late for you to find the right team of doctor's that can take care of your Cancer. My husband and I followed the instructions of our local Oncologist, and got a second opinion. Preferably from a Sarcoma Center and a Specialist in Synovial Sarcoma. These doctors see a high volume of patients with SS and have the most experience with SS treatments. We were blessed to be able to travel to MD Anderson in Houston, TX. I hope you can do some research online or ask your Oncologist at home, which Cancer Center he will recommend. Good luck with everything Kim. Take care.


#3

You may want to read this fairly recent article (May 2013):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3660127/

There is a paragraph dedicated to synovial sarcoma. It mentions high dose ifosfamide, pazopanib, the T-cell trial at NIH, the APO2L/TRAIL trial and cediranib.


#4

Hi Kim,

Think positive about all you do, including your health.



I first had SS in 1963 and lost my left leg. There was no chemo then. In 1967, SS returned in my chest bone. After 3 months in the hospital and many surgeries on my chest and lungs, I was able to go home and hold my one year old daughter. In 1970, SS returned to my left shoulder. On our 5th wedding anniversary, I lost my left arm.



Later in 1970, my preacher and two other preachers came to my house and performed the ‘Laying on Of Hands’ ceremony. Three months later, I had my last SS operation in 1970, removing part of my left lung and chest wall. I have been cancer free for the last 44 years without chemo. Just think how lucky your are to have chemo available. Surgery may be necessary, but just keep thinking positive.



Yes doctors are not perfect and make mistakes, but always challenge what they say with other opinions. Doctors are like libraries, some have a few volumes of experience and others have many more volumes of experience in their minds. If you want the best answer to your question, then go to the library with the most violumes of knowledge.



In 1964, I graduated from college, got married, and worked until 2001. Today, I have two children and two granddaughters. Life is good!



You should be fine with your SS situation. Just keep thinking positive and believe that you are here to LOVE and be LOVED by those significant people around you.



Regards,

Bob