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.

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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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@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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@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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@becsbuddy

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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Hello Becky, thank you for the reply! I started on 500mgx3 first week, and am now on 1000mg x 3 a day. I have a telephone appointment with my doctor on the 3rd june, hopefully to find out about the lung anomaly. I was all set for the ESWL treatment of the kidney stone, but when i got there they could not find it on the x-rays or scans, so apparently y it had moved back up in my kidney, and alas, the doc could not treat it, so they are still up thee like ticking bombs… Thank you for the link, I will read up! Best regards from sweden.

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@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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@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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@caradivs

Hi @1kjewels I have just been diagnosed with this rare cancer I am only 32 and in complete shock. I had an 8cm tumour removed 6 weeks ago and I am starting mitotane next Wednesday. I feel so alone aswell as it’s so rare and all literature looks so bad. I guess we have to make our own and try to stay as positive as possible – I must admit I am struggling thinking about what’s to come

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Hello. I am having my adrenal gland out in a few weeks. I am very nervous and have one told 3 people. I am not sure what to explain at all.

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@tenn3

Hello. I am having my adrenal gland out in a few weeks. I am very nervous and have one told 3 people. I am not sure what to explain at all.

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Hello @tenn3 and welcome to Mayo Clinic Connect. Thank you for joining and sharing with other members what you have coming up for your surgical procedure.

Have you been diagnosed with adrenal cancer? Why are you feeling like you do not want to tell others?

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Hello. I have had ACC twice. In 2012 I had a 15 cm tumor removed along with my right adrenal gland and then in 2019 I had a much smaller 2.5 cm tumor along with my left adrenal gland removed. The smaller one was high grade though. Mitotane was recommended both times. In 2012 I chose not to take it as it would have impacted my other adrenal gland and I wasn't ready for hydrocortisone. The ACC in 2019 was considered a new occurrence, not a recurrence or metastatic… A doctor at the University of Michigan recommended radiation along with mitotane. For several reasons I chose not to take mitotane and radiation was out due to the damage it would cause to my internal organs. Mitotane was out due to one, the efficacy of mitotane and two, I couldn't risk having an adrenal crisis during Covid. I'm not against others doing what they feel is best for them. Frame of mind is half the battle. Also, I've changed a number of life style choices to see if they make a difference. I've found on my journey with cancer that there is no "right" way for everyone. If you believe what you are doing is going to help you, it probably will. The placebo effect is mind over matter. Also though, if you believe what you are doing probably won't help, then it probably won't or the nocebo effect. Have faith in your choices.

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@tomelledge

Hello. I have had ACC twice. In 2012 I had a 15 cm tumor removed along with my right adrenal gland and then in 2019 I had a much smaller 2.5 cm tumor along with my left adrenal gland removed. The smaller one was high grade though. Mitotane was recommended both times. In 2012 I chose not to take it as it would have impacted my other adrenal gland and I wasn't ready for hydrocortisone. The ACC in 2019 was considered a new occurrence, not a recurrence or metastatic… A doctor at the University of Michigan recommended radiation along with mitotane. For several reasons I chose not to take mitotane and radiation was out due to the damage it would cause to my internal organs. Mitotane was out due to one, the efficacy of mitotane and two, I couldn't risk having an adrenal crisis during Covid. I'm not against others doing what they feel is best for them. Frame of mind is half the battle. Also, I've changed a number of life style choices to see if they make a difference. I've found on my journey with cancer that there is no "right" way for everyone. If you believe what you are doing is going to help you, it probably will. The placebo effect is mind over matter. Also though, if you believe what you are doing probably won't help, then it probably won't or the nocebo effect. Have faith in your choices.

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Good afternoon @tomelledge Welcome to MayoClinicConnect, a place where members share their experiences of their health journeys and give and get information. But we don’t try to force our opinions on others! I’m so sorry that you ave a second type of adrenal cancer. Did your doctor explain everything about radiation therapy? I think its more pinpoint today so shouldn’t damage your organs.
You sound like you are very calm and accepting of whatever comes..has your doctor explained what the future brings for you?

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@becsbuddy

Good afternoon @tomelledge Welcome to MayoClinicConnect, a place where members share their experiences of their health journeys and give and get information. But we don’t try to force our opinions on others! I’m so sorry that you ave a second type of adrenal cancer. Did your doctor explain everything about radiation therapy? I think its more pinpoint today so shouldn’t damage your organs.
You sound like you are very calm and accepting of whatever comes..has your doctor explained what the future brings for you?

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Good Morning Becky. Thanks for the welcome. First, I'm sorry if you and others believe I'm trying to force my opinion on others. Take my opinion for what it's worth. I'm not a doctor, I'm just sharing my experience so others can see there are many options. And yes, my radiation oncologist did explain that I'd be "burning" several internal organs. I've had head neck radiation so I'm not new to radiation and it's possible damage or its ability to bend around various organs etc. I'd be very interested in hearing from someone who has had radiation and what actually happened to their various organs. I'm not sure what you mean by second type of adrenal cancer?

One of my oncologists, Dr Hammer, called me an enigma. My experience with ACC is unusual. To go 7 years without a recurrence or metastasis and then have a new tumor pop up is not normal I guess… I'm NED right now a year and a half after my second tumor removal. I think that is a good sign from all of the research I've done.

I've been called stoic so I guess I'm pretty calm and I'm proactive. I do a lot of research on ACC and on what others have done to help themselves. I won't mention all of what I'm doing as it is what resonates with me to live a long and happy life, however long it may be. And I get checked with CT or MRI twice a year.

As for my future, no, I haven't had a doctor predict my future. I've talked to or read stories from other survivors so I know what the future may hold but I also know the statistics and know that there are some who survive. That is what I'm continuously striving for.

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