← Return to Adrenocortical carcinoma (ACC) outcomes: What to expect?

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@annern

Thank you for your response and congratulations on getting past several years after diagnosis. You are the second person who has mentioned to me taking Mitotane for just two years. My oncologist was vague about the length of time I would need to take it. 2 years, 5 years , or possibly the rest of my life. I’m starting my 4 th month and so low on energy. The replacement hydrocortisone has such a roller coaster effect on me. I am adjusting to GI side effects. It is good to hear that other people are able to stop the chemotherapy after two years. Do you still need to take replacement hydrocortisone or does the adrenal gland start producing cortisone again? It is hard to tell if my lack of energy is due to the Mitotane or the replacement cortisone. Another question is have you ever heard of slow release cortisone that would avoid the peaks and valleys of taking the replacement three times a day? Thanks for any information. I have my first CT scan next week.

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Replies to "Thank you for your response and congratulations on getting past several years after diagnosis. You are..."

I wanted to stay on mitotane longer, but the side effects were terrible. I was actually afraid to go off of it, because I didn't want my cancer to comeback, but my body could not handle the drug. I was very weak , losing weight and terrible brain fog. I still take prednisone and probably will for the rest of my life, I was on a higher dose, but now I take 5mg daily. No I have never heard of slow released cortisone. Praying for good news on your ct scan.