Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

My Grandson Billy

In April of 2011 My Grandson was diagnosed with Synovial Sarcoma. At First they couldn’t determine where it started until they found a 12 cm Tumor in his foot. After the Countless x-rays and Mris the doctors determined it had metastases and traveled to his leg, Groin and even found several nodules in his Lungs. Billy is 17 years old and a High School senior in South New Jersey. We were all devastated but still hopeful that he could beat this horrible, Rare Cancer. He Began treatment with a Chemo cocktail of Doxorubicin and Ipomoxicide at Children’s Hospital of Philadelphia (CHOP) and had 8 sessions of Chemo ...every 3rd week...for 3 days a session..After the Chemo he had 42 straight treatments of Radiation (Monday to Friday). During the treatment he had a few Mri's which showed that the Chemo Had reduced some of the Cancer. Finally after a few weeks of no treatment in January My Daughter and My Grandson Traveled CHOP to consult with the Doctors as to what his new Therapy would be. They couldn’t continue with the Doxorubicin because it conflicted with the Radiation, so we wondered what type of Medication He would receive. After the Final MRI the Doctors called them in and told them that Billy is Cancer Free. In Remission. GONE. NOTHING . NADA..No Cancer. I really don’t think there was a dry eye anywhere, whoever we told (and we told everyone) they cried and couldn’t believe the news. We all prayed and lit Candles and went to Church and still do. I can’t say enough about the care that Children’s Hospital of Philadelphia gave my Grandson. They are truly sent from God. Which brings me to someone else I need to Thank. All of our prayers and all of the Candles..and all of the Promises did not go unanswered. Thank You Jesus for answering this prayer. For everyone out there suffering from this Horrible disease we continue to pray for you and your loved ones. I can say from experience that Miracles do Happen. Don’t ever give up, don’t ever believe that there is no hope..Because there always is and always will be. Billy is still experiencing a lot of Pain , especially in his foot and continues to be on heavy duty Pain medication. The pain we are told is from Scar Tissue and Calcification in his foot. The doctors have told us this is not an uncommon side effect from the Heavy doses of Radiation and may continue for up to a year. Billy , you are truly My hero...and as far as my Daughter...You’re Hero 1 A...Love you both .....Anyone caring to answer can respond to either email. ■■■■■■■■■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■■■■■■■

Congratulations Trandernj! It sounds like your grandson had a miraculous outcome :-) I am puzzled about the second name in the chemo cocktail. I tried to google it but it didn't give any result. Could it be ifosfamide and not ipomoxicide by any chance? Did your grandson have radiation only to the foot or also to the groin and the lungs? He didn't get any surgery?

Hi Elodie.....Not sure of the spelling...think it may be IFOSFAMIDE....

Hi Elodie.....Radiation was on the entire Leg up to an including the Groin..Not in the Lungs. Surgery was discussed but considering the size of the Tumor in his foot and the fact that it had wrapped around his bone, they were convinced that they would not have clear margins and so surgery wasnt an option at that time. I am telling you it was truly a MIRACLE...

Congratulations tradernj, this is a great outcome. I beleive in miracles!
Also your body creates but also naturally kills cancer, and I’ve seen a few cases where medically they’ve given up hope but then something else comes in to play. This should all give us hope and also not to rely solely on the information coming from your sarcoma specialist, they probably are right, but they have gaps in their knowledge.