kpowen

Hi there, I am new to this blog and thought I would share our experience in Australia. My husband is 45 and was diagnosed 8 months ago with extra hepatic CCC (probably Gallbladder primary) with liver and lung secondaries. It was only discovered when he presented with a DVT (and PE to his lungs) unfortunately because of the lung secondaries he is not being considered for surgery. (we went to sydney for 2 surgical opinions – Dr Charbel Sandroussi and Dr Haghighi RPA)
He had SIR spheres inserted January and tolerated these well, the large liver tumour was successfully treated and his liver regenerated to compensate. At the same time he had GEM/CIS and his tumour markers dropped immensely. We had disease stability until 2 months ago when repeat MRI/CT scans showed disease progression. In the meantime we got our onc to send pathology to CARIS in the states for advanced tumor profiling. He is now on a new chemo which is a combination of what our onc thought was next in line and what CARIS thought might be beneficial. The difficulty is that he has peripheral neuropathy in his feet which restricts what chemo can be used.
We are really fortunate in that he is remarkably well and even though his liver tumor burden has increased his liver function is going ok. He still works, exercises and plays with our 9 year old… it has been difficult getting co-ordinated treatment and information probably because it is a rare cancer although I don”t accept this as an excuse.
We are now requesting to go to Melbourne to the Peter McCallum Cancer Institute to get another opinion and this is with the support of our onc. I will try to keep updating our progress via this blog. Best wishes to you all.