Thursday, February 2, 2012

Adria and Ifos Fail

So, some catch up here first. About October/November of last year I noticed my leg developing some swelling and I got a hydrocele. I ignored it for the most part since my surgeon indicated I could experience swelling after the surgery and the two symptoms weren't too bothersome. The swelling in my leg progressed and I went to a local doc who suspected DVT. He ordered CT and US of my pelvis and leg. The US was negative for DVT, but the CT showed a mass, possibly scar tissue in the area of previous excisions. I went ahead and got in touch with my oncologists and was finally able to get up to them in January.

They did an MR and determined that what had previously been ruled scar tissue was more tumor. Especially with comparison to the new CT and my symptoms. Symptoms persist and progressed, by this time my calf was beginning to show signs of swelling also. Elevation is ineffective... During discussion of the MR images, my surgeon suggests a 50/50 chance that a hemipelvectomy may be necessary if they aren't able to get clean margins from an excision. At this time the tumor is shown to be wrapped around my iliac blood vessels and nerves. The result is the swelling I'm experiencing and potential loss of motor control of the leg...

A hemipelvectomy is not something I could love with so I ask for a PET scan before proceeding and begin asking my oncologist for alternatives, ie clinical trials. Specifically, I asked about immunotheraputic options and some of the clinical trials run there and at the NIH. The results of the PET scan show metasticies, so the hemipelvectomy is off the table, thank goodness. Because of my requests, my oncologist sends me to my new oncologist, an immunotherapy researcher. In meeting with him he presents 4 options after discussing the failure of Adria and Ifos; Gemcitabine & docetaxel, pazabonib, Yondellis, or maybe his clinical trial. I have to first have a specific typing for his trial so we choose to test for that...test to be performed immediately, then decisions.

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