I was diagnosed with Stage 3 Adrenocortical Carcinoma in Feb 2018. March 29 had surgery to remove massive tumor on adrenal glad. Also removed one kidney, spleen, 1/2 pancreas and portion of colon. Had 6 wks of radiation, however next scan showed new growth on both lungs and am currently on Mitotane. Next scan showed growth of spots, but nothing else new. Increased dosage of Mitotane and waiting for next scan in 4 weeks. I am looking for anyone who may has experienced this and found alternative treatment with success. This is a very rare cancer, 1 in 1.7 million odds.
I had surgery for adrenal corticoid cancer at Mayo Clinic in Rochester in June 2018. I chose to not take any mitotane or further treatment since I am 81. Scans since then have remained clear. Am now with Dr. Habra at M.D. Anderson in Houston.
Liked by Colleen Young, Connect Director
Hi @alanbruce you may have noticed I moved your post to this discussion on adrenal cancer that you have taken part in so that you can have all your posts on this topic in one place. Simply click VIEW & REPLY in your email notification to find your post.
What has your doctor said about the elevated enzymes?
Liked by Becky, Volunteer Mentor
@alanbruce, do you mean nivolumab (Opdivo) + ipilimumab (Yervoy)? I think "nivipi" was a typo in your message, right?
I'm tagging @1kjewels @caradivs @lesliestump @anderson2742 to see if they have some experiences with immunotherapy and elevated enzymes to share with you.
Did the enzymes levels only start to climb since starting the immunotherapy? Are you in a clinical trial?
Liked by Becky, Volunteer Mentor
@alanbruce Hi Alan! I am sorry, but I don’t have any experience with either of these treatments. I will be following to learn more, however.
Liked by Colleen Young, Connect Director
I do not have any aditional information on this combination of drugs. Once back on the treatment and she has more scans I will update you.
Liked by Colleen Young, Connect Director
@alanbruce
Thank you so much for the update. I hope all goes well for you.