I was curious to know if any of the 13 known Synovial Sarcoma in the stomach are available to discuss. I would like to hear your story. If I word something wrong, please forgive me ahead of time.
Dragonfly28
I am Michael, and in January became aware of an 8cm x10cm mass on the inside of my abdominal wall. Not in the stomach itself but some people call the belly the stomach. I will share anything I can if your interested, and there is a discussion on board here under 44 year old stage iv synovial sarcoma.
Take care
Michael,
What did they do after surgery?
Charlotte
Hello Charlotte,
Although I went to U of C in Denver to have a resection surgery done, the confirmation of liver mets and other peritoneal cavity mets changed the treatment plan. The resection of almost all of my right abdominal wall would have required many months of recovery due to the total prosthetic rebuild. This was not a viable option as the sarcoma is quite aggressive. We went with an aggresssive Doxirubicin/Ifos Chemo treatment requiring 5 days of inpatient every 3 weeks. I just finished my 5th round and am waiting for the 17th to get a new CT scan. My last scan showed about 20% shrinkage after the first 2 cycles.
Take care, and let me know if I can share further.
Michael
Hi Charlotte,
I was diagnosed with synovial sarcoma on the left side of my abdominal wall, with mets to the omental wall. I had chemo ( Adriamycin/Ifos/messa) (AIM) four cycles of 3 full days out patient rest 2 weeks and start again on the third week. The METS disappeared ofter the first two rounds along with shrinkage, there was additional shrinkage after the following rounds. I was able to have surgery after the chemo.
Stay strong and well,
Liz
Michael,
I hope this message finds you well. A total prosthetic rebuild is what I went to Vanderbilt for but when I came out of surgery that had only took a section.... which scared me due to what little I have found online about this type. I guess I am lucky and just did not realize it. I would have felt better mentally if they took it all. I still have stomach problems but feeling pretty good other wise. Test every 3 months. I have a scope scheduled for next month. I too am a single parent at this point in my life. Ethan is my lifeline! Between God, Ethan and my family and friends ...life is now simple and so much happier..odd huh? I will keep you and your son in my prayers!
Best regards
Charlotte
Michael Stangel said:
Hello Charlotte,
Although I went to U of C in Denver to have a resection surgery done, the confirmation of liver mets and other peritoneal cavity mets changed the treatment plan. The resection of almost all of my right abdominal wall would have required many months of recovery due to the total prosthetic rebuild. This was not a viable option as the sarcoma is quite aggressive. We went with an aggresssive Doxirubicin/Ifos Chemo treatment requiring 5 days of inpatient every 3 weeks. I just finished my 5th round and am waiting for the 17th to get a new CT scan. My last scan showed about 20% shrinkage after the first 2 cycles.
Take care, and let me know if I can share further.
Michael
Hello Liz,
That is wonderful that the chemo worked. What surgery did that perform and how are you doing after surgery?
Charlotte
surviver Sally said:
Hi Charlotte,
I was diagnosed with synovial sarcoma on the left side of my abdominal wall, with mets to the omental wall. I had chemo ( Adriamycin/Ifos/messa) (AIM) four cycles of 3 full days out patient rest 2 weeks and start again on the third week. The METS disappeared ofter the first two rounds along with shrinkage, there was additional shrinkage after the following rounds. I was able to have surgery after the chemo.
Stay strong and well,
Liz
Charlotte, they had to remove what was left of the mass that was still attached to the abdominal wall, so they removed the piece of the abdominal with what was left of the mass, they removed 3 ribs and my spleen. That was in 2007, I had my first recurrence in my left lung in 12/2010 it was surgically removed no chemo, and my second recurrence in 12/2011 this time it was more aggressive (bilobial masses in the left lung) this time chemo Ifos/Etopiside/mesna 2 rounds of 3 full days rest for 21 days then again. This time chemo was not successful, so the thoracic and my oncologist recommended surgery and I had surgery with clear margins. I'm a patient at Memorial Sloan-Kettering Cancer Center the doctors there are amazing.