On 9/16/2009
TeaQueen wrote:
Hello! I'm new to this board because I'm researching for a dear friend who was diagnosed with adrenal cancer in April '09. After her left gland and kidney were removed in surgery (April), she had 28 days of radiation. Her most recent CT showed the cancer is now in the liver and possibly thyroid area. Her oconlogist wants to put her on Mitotane. I've done lots of reserach on this drug and it seems to be very toxic. But I'm curious...for those of you who have used the drug...what has been your experience? Did it help? Hurt? Where you able to tolerate it? At what doseage? Thank you so much for any help you can give. Prayers for your as you fight this horrible disease.
Lynne
Hi Lynne,
I am also new to this board, but I wll try to help and tell you my story.
I was diagnosed with adrenal cancer October 2005, it was also invading the
main vein into my heart so I had open heart surgery November 2005, I had an
eleven hour operation and had my left kidney, adrenal gland and tumour
removed. All was going well until August 2007 when it came back in both
my lungs and liver. I was put on mitotane and I am now taking five
tablets a day (1500 mgs), which at the moment I am tolerating, fingers
crossed. I have been on this dose before but I was being sick all the
time and felt awful.
Approx three weeks ago I was taken into hospital because I was feeling very
poorly, they thought I had swine flu or meningitis, it turned out to be a
virus, and my white blood cells were raised. I had various CT scans and the day
I was allowed to come home I was told I had to go and see my oncologist, as he
had a clinic there that afternoon. He gave me some bad news, which knocked me
for six. He told me they had found another tumour on my right adrenal
gland and there were more tumours on my lung, one had grown quite a lot.
I go to see my consultant next Thursday and then to see my oncologist for the
next course of action. I just hope they can operate as my husband has been on the
web and it says you can live without both adrenal glands. My oncologist has
told me I have to be admitted into Clatterbridge on Merseyside for a few days
for chemo. I have been told I cannot have radiation because it will
damage my other kidney.
I do hope your friend is coping. I know how hard it is but she has to be
positive. My consultant said she thinks because I was so positive when I
was diagnosed first time it got me through it, as they thought I wouldn't make
it. I have terrible sweats and I am very tired all the time, is your friend the
same?
If you need any more information please ask and I will try to help.
Regards,
Jeanette