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Synovial Sarcoma - Online Support Group

MD Anderson


#1

Hi everyone! I hope all is well with you and yours. An update on James. We went to MD Anderson in Houston TX. James had a set back in September and we wasted no time getting there. After being there for three weeks, we came home with a new plan!

The Ifosfamide dose has doubled. It is given with albumin, mesna and prednisone. James looks and feels better than he has since this monster entered his life. The treatments are evry day for 7 days every two weeks. He gets to do the treatments out-patient as he wears a backpack with a pump for the mesna for the 24 hour dose. The actual chemo treatment takes about 4-5 hours with the pre-meds and ifos.

MD Anderson's sarcoma center is quite amazing and accomodating. If you are able to go to a hospital that has sacoma specialists, then PLEASE do so. Wishing everyone peaceful and heart warming holidays. I will keep you posted.


#2

Thanks for the update Ellen. What's the total dose for 7 days? Is the treatment done locally or at MD Anderson?


#3

Hi Elodie! The Ifos is 2 grams (over three hours) every day for 7 days. IF the bloodwork is stable and he is not neutropenic, they will infuse 2.4 grams (over three hours) over 5 days. He has never been given the treatment in a 5 day cycle though. He got the first cycle at MD Anderson and after the docs at MD Anderson contacted James' docs, and they agreed to administering the high dose, James was able to get his cycles in Burlington (Vermont), which is still a 2 1/2 hour drive from home...but at least it is not half way through the country in Texas.The sarcoma specialists said that most oncologists do not give a high enough dose of the ifos for it to make a lasting impression on the demon. In the same breath, the specialists stated that most oncologists will not risk administering such a high dose. James looks wonderful and he has not had pain upon inhalation since he started this cycle. How are you doing Elodie?


#4

So far so good. As of August, I had no evidence of disease and my next scan will be in February (they gave me a very welcome 6 months break this time...) I am wondering why they use prednisone and albumin. Is James not getting neutropenic on day 12? My high dose ifosfamide was given over 4 hours instead of 3 and 9 days instead of 7 (dose was 3.4gm the first day then 1.7 gm the following days). When is James getting his next scan?


#5

Oh Elodie! A 6 month break AND no evidence! You must be in heaven! I am so happy for you! WOW 3.4gm-that's a high dose!!!!! How did you feel after that blast? James just recieved two units of whole blood this last time. James is so strong. He amazes me. This is only the second time that he has recieved blood. The albumin helps prevent ifosfamide induced neurotoxicity. I am guessing that the prednisone (anit-inflammatory) helps with the brain swelling that can happen with high dose ifos. I have read that prednisone is also common in many other chemo combos. I am thinking that the steroid may enhance the ifos as well. His next scan should be in January.


#6

I did pretty good with high dose ifosfamide once I got used to the roller coaster ride... Except that for my last cycle, I got a fungal infection in my blood (candida parapsilosis). They had to remove my port and discontinue the chemo (Fungi like the material the port is made of. They grow a film on it).


#7

Well, the treatment didn't lasttoo long....the nodules are growing again (two of them). After James' oncologist spoke to his MD Anderson oncologist, they decided to go with gemicitabineand docetaxel. Any thoughts?


#8

Gemcitabine and docetaxel is the typical second line combo. It doesn't work great for synovial sarcoma. But may be James will get a few months stability. You may want to look at other options in the meantime. Clinical trials are listed here:

http://clinicaltrials.gov/

You would use 'synovial sarcoma', 'soft tissue sarcoma' or 'solid tumor' in the search box.