Welcome to the community although I am so sorry you’ve had to join us. This community is organised into groups where people share their experiences and support one another. Would you mind letting me know a bit more about your husband’s cancer so that I can direct you to the right group? I’m not familiar with mitotane so I can’t help with any experience myself
thankyou for responding. I have read your post and am in awe of everything you have and are coping with. I am unsure how to use this site and tried replying to you earlier but it would not send. I will try again now.
my husband had a massive tumour removed from his adrenal gland, along with his kidney and gall bladder just before Christmas.
it is called an adrenocortical carcinoma and weighed
Hello again! I am struggling with my internet and using this site. We are in the process of changing provider.
to complete my message. The tumour was 3.9 kg and what we thought was my husband getting a belly in his fifties was actually all tumour ! it is a rare cancer that can only be treated with a chemotherapy tablet called mitotane and our oncologist will decide on radiotherapy after a scan. We have read about the drug and he will be on it for a minimum of two years. We are interested to hear anyone else’s experience of this.
I am sorry not to have replied sooner. The site is a bit clunky and tricky to use so thanks for sticking with it! It sounds like your husband (and you too - it’s not just the patient who’s affected) are going through a really difficult time.
It is always hard when you have a rare cancer to find people with a shared experience yet it’s so helpful. I wonder if it might be worth asking about the treatment your husband is on in the kidney cancer group:
