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Adrenocortical carcinoma (ACC) outcomes: What to expect?
Neuroendocrine Tumors (NETs) | Last Active: Feb 11 12:03pm | Replies (23)Comment receiving replies
I was taken of the mitotane by my endocrinologist because I went in to adrenal crisis and was in the hospital for 3 days with low sodium and low blood pressure. It is to bad that to treat adrenal cancer we have to take a drug that is from the 1970
Replies to "I was taken of the mitotane by my endocrinologist because I went in to adrenal crisis..."
I got started on hydrocortisone within a week of starting Mitotane. This is to prevent what happened to you! Did you not get replacement cortisol started when you started Mitotane? That would be a big mistake on the part of your oncologist and endocrinologist. Some people also need testosterone and florinef to replace missing blood pressure hormones made by the adrenal gland and suppressed by Mitotane.
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I was stunned when I read the prescribing instructions for Mitotane and saw how old it was! No better treatment in 50 plus years! Just underscores how rare this cancer is, and why we feel so isolated. The oncologist gave me research from the late 1990s to review! As a RN I just was shocked about how little information there is available. I did research the national comprehensive cancer standards which still show Mitotane as the treatment recommended.