I first want to thank everyone for all the valuable information that's being shared on this forum. My 26yr old husband of 2 years, (and high school sweatheart
) was diagnosed with ASPS about 7 months ago when he went to the doctor for having a "swollen" knee. We had thought it was just simply from overuse or something since he was working at 3 different jobs at the time (one full time job, and 2 part-time police officer jobs, where he was so close to getting hired on full time finally after 4 years of schooling and 2 academy classes). Anyhow, we first tried the chiropractor a year ago who gave him an X-ray and told him it was probably brucitis. Then our family dr. gave him anti-inflammatory meds until finally we requested an MRI, which led us to diagnosis at The James cancer hospital at The Ohio State University on July 19, 2012. Like everyone else it took a few weeks for the results to be finalized and in the meantime we got a second and third opinion--at CTCA Philadelphia as well as at The Universiy of Michigan. In this one month period, it was discovered that Cory had numerous lesions in his lungs, at least 2 in his brain and the primary tumor in his left thigh had begun eating away at his femur bone. He has been on crutches and on disability at work ever since, to avoid fracturing the bone where the tumor was involved.One open biopsy on the knee/femur bone and one brain surgery later we decided to return to The James where his Onc. drew up a treatment plan involving 10 days of whole brain radiation (bc the radiologist thought there might be meningeal involvement) followed by plans to get involved in the Cedirinib trial at NIH. We visited NIH at the end of September to meet the doctors and pre-screen him for the trial. Everything looked good but we had to wait four weeks post radiation before he could actually start. Well in that four week period, weather started getting cold here in Ohio and his knee started causing him severe pain. 2 hospitalizations later, NIH called with the seemingly devastating news that he no longer fit the requirements for the Cediranib trial. The blessing was that he didnt qualify because there wasn't evidence that his disease had progressed 20%. We had the choice to wait until it DID, or choose another plan of action and it seemed obvious to choose the latter.
Our Onc. at The James then prescribed Cory with Sutent. He has been on this drug four 4 months now with manageable side effects.... Mostly complains about metal taste, and burnt tongue feeling. Initially the pain in his knee subsided quite a bit too which was a huge plus! Got to enjoy the holiday season almost free of pain. He is using a transdermal pain patch plus extra meds for breakthrough pain. I'd say the first 2 months he didn't use the extra meds at all. This past month, however he seems to be in a bit more pain, especially in this cold weather and at night. The sutent is starting to cause nausea and vomiting also, accompanied with weight-loss. So far his scans seem to show stability on average, but his knee does not seem to be getting smaller. After reading some of the posts on here I am considering getting more opinions about the possibility of resecting the primary tumor. It is pretty big! The surgical oncologist here at The James didn't want to talk about resection until the tumor shrunk. And our main oncologist doesn't seem to have much hope that it ever will. Every time we see him he seems pleased with the results of the scans but continues to talk about "the next plan" meaning traditional chemotherapy. I decided to reach out on here and ask for some advice on
A) surgical doctors with experience in this aggressive type of removal
B) ideas on alternative plans if our Onc. tries to push traditional chemo
And anything else that might be helpful to our particular battle.
Thank you in advance and again thanks for sharing on this forum, for it truly has been helpful these past few months in giving us hope and a lot of information on this disease we know so little about.
Thank you,
Angie