My husband was diagnosed with synovial sarcoma in January of 2013 - went through 6 rounds of chemo and 22 rounds of radiation, major surgery to remove the tumor. Then after a PET scan and multiple MRIs this month (Nov 2013) we found out he has several spots on his lungs - because of the proximity to his heart, surgery does not look like a viable option.
He went to the Mayo clinic last week and the recommendation for his was to get enrolled in the Morab-004 clinical trial. They this week we went to a synovial specialist at MD Anderson and she said they would not be putting anyone with Synovial Sarcoma in that trial because she does not believe it works at all. She has recommended a high dose of Ifosomide.
Hello - I was diagnosed with high grade SS stage 3 in my lung Oct 2012. After surgery, Adria and ifex and radiation it has returned in my lungs. I have 6 mets that are all small. I’m MD Anderson in Orlando and my oncologist has had great success with two other patients on high dose ifex. Start my second treatment next wk of high dose ifexbthen will be scanned! Praying and hoping to be healed. Good luck to you! Let me know if I can help answer any questions.
I have similar circumstances. currently being treated for mets on my lungs. I tried the morab and it didn't produce any results. Someone else in my clinic was on it as well with no success. I would go ifos or whatever MD anderson recommends.
Thanks for the info. We finish up round one of six of the high dose ifos today at MDAnderson in Houston today. Praying that it is killing that cancer right now. He is having some major nausea any recommendations? Thanks
There's different things that your husband's oncologist can try to reduce nausea. In my case, one thing they did was to add a bag of fluid by IV to the ifosfamide infusion. I believe that's what made the difference.
I have been on a number of chemos now and high dose ifos was certainly the most difficult. I just tried to sleep a lot and requested anti nausea meds when I needed them. I tried a number of different anti nausea meds and found that compazine (sp) worked best for me. Adavan knocked me out pretty good as well.
My husband was also diagnosed in Jan 2013, went through 4 cydles of Adria and Ifos followed by BKA and now has mets in his lungs. So went back on chemo with high dose of Ifos and waiting to be rescanned in the next couple of weeks. Wondering if radiation should be our next apraoch. How did your husband do after having chemo with high dose ifos. Did this chemo help at all. Did you try the morab trial.
We finished the high dose ifos the end of March. Mixed results two of the larger tumors grew, one stayed the same and some of the tiny ones you can no longer see. He did ok on treatment till the sixth round when he ended up in the hospital with a fever, had to get three units of blood (1st time).
After six weeks with no treatment all the big tumors ended up growing again. We thought about radiation but needed to get another treatment started since they were growing again. He started the Yondelis clinical trial here in San Antonio this week.
We are in San Antonio. Just started round 2 of Yondelis this morning, anyone get heartburn while on this treatment? Wondering if it is just that or something more
MD Anderson had him on high dose ifos- told us it was working better than it actually was, long story and we won’t be going back there. He is now going to CTRC in San Antonio for the Yondelis clinical trial. We will find out at the end of the month whether or not it is working.
Thank you for your reply. Please let me know the results of Yondelis treatment at the end of this month. My husband is in the same stage as yours. Currently he is just finishing high dose of IFOS. Not sure how much it is helping him. Was thinking of getting a second opinion at MD Anderson. But if they are recommending high dose Ifos also then I am not sure.
After high dose ifos she suggested Morab-4, we decided to go with the Yondelis instead mostly because the location of the trials. We would have been driving four hours each way every week. Though she did also say that if they had Yondelis she would recommend that as a good choice also.
Just got results from the CT scan after the first two treatments of Yondelis. Not sure if they will continue him on the trail or not. He had one of the big tumors get smaller but all of the smaller spots grew. Not the news that we wanted to hear. Will see the Dr on Monday to see what he says.
Adriana, sorry to hear the discouraging news. But may be the fact that the big one got smaller is a little encouraging. Can they combine Yondelis with any other meds.