A Adrenal Cortical Carcinoma (ACC) story
May 20, 2016
My husband, was suffering from high blood pressure for a couple of years, but not to poorly with it. In August 2015, his feet began to swell badly and he gained lots of weight over a month. We where sent to Kings hospital London, and found he was suffering from crushing syndrome. After further testing we found he had ACC, with mets to the liver, lung and brain.
He had two rounds of EDP Chemo , at Guys, but unfortunately it showed no signs of doing anything. At the end of January 2016 we where told there was nothing more , that could be done. He passed away March 2016. I'm still in a total state of shock that all this has happened to our family. My children and I wish things could have been very different and wish we had more time
My heart breaks for you, i am in the same boat, my husband 42 was diagnosed this december with stage 4 acc, met to liver and diagphram. Underwent surgery, but it has beat through every chemo regimen he has been on. He is now on Mitotane and wants to stop. Thinking about trying out an alternative therapy clinic in Mexico.
I hope that you find some luck, with treatment. I know every type of illness is bad, but it's so very hard to understand ACC, and trying to find information and helpful information was a nightmare for us.
I wish with all my heat for you, your husband and family that you have some success, to shine on you. Give extra tight hugs to him, and know I'm thinking of you, going through this horrid journey.
please take care of yourself to, as you know all to well I'm sure, there's so much to remember all the time, it can be a struggle sometimes.
much love and great big tight hugs for you all xx
Lynn, did you try CARIS Molecular profiling on his tumor paraphin blocks? They may find the chemo that will work for him. If it keeps growing while he is taking Mitotane than it means that Mitotane does not work for him. Actually it works only for about 30 per cent of the ACC patients.
EDP did not work for my husband. But the chemo prescribed based on the CARIS profiling works.
Which regimen did you already tried and how were they prescribed? Just through the standard line 1-2-3 or did you do any profiling on his tumor?
