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Adrenal Cancer: Anyone else have this?
Cancer | Last Active: Dec 18, 2022 | Replies (61)Comment receiving replies
How are you doing today? I'm Tim, 41 years old from Sweden. I had an adrenalechtomy march 26th, and that had a stage 2 aggressive tumour with a KI67 of 21%, and 40mitoses per mm2. So quite aggressive. They considered the surgery a success, but did see something on my lungs in a previous scan, that had become smaller. I am going in for a pet scan on Tuesday the 18th of May. I start adjuvant Mitotane treatment on Monday 17th May. On the 26th of May I have a ESWL for 4 kidney stones, a bit nervous for that. Also nervous about the side effects of the Mitotane, particularly the ability to drive and work, and the gynomastecomia. Any more experiences would be gladly appreciated!
Replies to "How are you doing today? I'm Tim, 41 years old from Sweden. I had an adrenalechtomy..."
@timothyatkins Good Morning! I just saw your question. I tried Mitotane for a few months after radiation. However, it didn’t seem to work for me. I chose to try chemo infusions and had good luck. I did three days a month for 6 months. There was good shrinkage of spots on my lungs and nothing new developed anywhere else. (Mine had metastasized )
Next I went on 14 mg of Lenvema which has worked very well for me with minimal side effects (at least ones that I could live with for a very long time). I was to the point where my dr was going to change CT scans to every six months. I had to go off for about 4 months because of a different surgery and the next scan showed some regrowth. So, the Lenvima has definitely had a great effect and does a good job for me I am back on now and hope to continue to shrink these darn spots!
Getting back to your question of Mitotane side effects, I didn’t experience much at all. If you are like me, you will be fine going back to work, but you may be a little more tired.
Hope this helps! There’s not much info out there and not that many of us! Please keep in touch!
Julie
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Welcome to MayoClinicConnect @timothyatkins . I am glad you found us. We’re an on-line community which shares health experiences and information. I’m not really familiar with adrenal cancer but I am glad your physicians are moving quickly with your treatments. I found this information from Mayo Clinic about Mitotane. https://www.mayoclinic.org/drugs-supplements/mitotane-oral-route/side-effects/drg-20064841
Are you starting on a low dose and being titrated up?