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Adrenal Cancer: Anyone else have this?

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.

Interested in more discussions like this? Go to the Cancer Support Group.

alan bruce | @alanbruce | Jul 16, 2019
In reply to @1kjewels "Hi Alan! I had six weeks of Proton therapy following surgery in my abdomen area. This..." + (show)
@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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annadamscleary | @annadamscleary | Jul 19, 2019
In reply to @1kjewels "Is there anyone else out there that has Adrenal Cancer?" + (show)
@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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alan bruce | @alanbruce | Jul 19, 2019

Thank you for your update. Glad you are doing well

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alan bruce | @alanbruce | Aug 22, 2019
In reply to @lisalucier "Hi, @alanbruce - I've moved your post about doing research related to your daughter's stage 4..." + (show)
@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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alan bruce | @alanbruce | Aug 25, 2019

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

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 26, 2019
In reply to @alanbruce "Can nivipi and ipilimumab combination therapy for adrenal cancer cause elevated enzymes" + (show)
@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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1kjewels | @1kjewels | Aug 26, 2019

@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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2 replies
alan bruce | @alanbruce | Aug 26, 2019
In reply to @1kjewels "@alanbruce Hi Alan! I am sorry, but I don’t have any experience with either of these..." + (show)
@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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timothyatkins | @timothyatkins | May 15, 2020
In reply to @1kjewels "@alanbruce Hi Alan! I am sorry, but I don’t have any experience with either of these..." + (show)
@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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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!

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 16, 2020
In reply to @timothyatkins "How are you doing today? I'm Tim, 41 years old from Sweden. I had an adrenalechtomy..." + (show)
@timothyatkins

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!

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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?

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