Adrenal Cancer.

Posted by 1kjewels @1kjewels, Nov 6, 2018

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.

@1kjewels

Hi Alan! I had six weeks of Proton therapy following surgery in my abdomen area. This process went very well for me, however, after it was finished a scan showed new growth in my lungs. I then started Mitotane for a time. After two scans showing continued growth, I got a second opinion. I then started a rigorous course of chemo for 6 mo. I have had good luck with this as some spots disappeared and some had shrunk considerably. Now that I’m done with that I will be starting a chemo pill called Levatinib. The hope is that this will hold what’s left at bay.

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Thank you so much for the update. I hope all goes well for you.

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@1kjewels

Is there anyone else out there that has Adrenal Cancer?

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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.

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Thank you for your update. Glad you are doing well

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@lisalucier

Hi, @alanbruce – I've moved your post about doing research related to your daughter's stage 4 adrenal cancer to this existing discussion on the same topic so you can connect with others who have talked about this cancer. Hoping that members like @1kjewels @annadamscleary @caradivs @lesliestump @anderson2742 will offer their thoughts about proton beam therapy and where they had it, if applies.

For reference, here is further information on proton beam therapy and specifically Mayo Clinic's use of this treatment https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491.

Is your daughter deciding whether or not to pursue this therapy option at this point, alanbruce? What symptoms has she been experiencing?

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She had 5 radiation sessions and now on immunotherapy and then now on immunotherapy. Recent elevated liver numbers

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Can nivipi and ipilimumab combination therapy for adrenal cancer cause elevated enzymes

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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?

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@alanbruce

Can nivipi and ipilimumab combination therapy for adrenal cancer cause elevated enzymes

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@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?

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@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.

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@1kjewels

@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.

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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.

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