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.

Colleen Young, Connect Director | @colleenyoung | Nov 7, 2018

Welcome to Connect, @1kjewels. I understand that the side effects of mitotane can be quite challenging, although everyone is different. Are you experiencing side effects? Have you asked your oncologist about complementary or integrative therapies?

You may also be interested in this discussion on Connect:
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

1kjewels | @1kjewels | Nov 8, 2018

In reply to @colleenyoung "Welcome to Connect, @1kjewels. I understand that the side effects of mitotane can be quite challenging,..." + (show)

@colleenyoung
Hi Colleen! Thanks for the link/information. This rare cancer can seem a little isolating since there isn’t much information or studies being done.
So far I am tolerating the Mitotane well. They are gradually increasing the dose to find that sweet spot of effectiveness and toxicity. They are running tests to see if immune therapy is an option and are looking for any available clinical studies. My hope is that the Mitotane starts making some noticeable differences and I can maintain where I am currently.

1kjewels | @1kjewels | Nov 28, 2018

Is there anyone else out there that has Adrenal Cancer?

Colleen Young, Connect Director | @colleenyoung | Nov 28, 2018

In reply to @1kjewels "Is there anyone else out there that has Adrenal Cancer?" + (show)

Oh my, @1kjewels. I do hate when members don't get connected with someone. It doesn't seem like we currently have members talking about adrenal cancer. Give me a few days. I'm going to work harder to get you connected. I've got a few options to pursue.

In the meantime, any updates on finding a clinical trial or the possibility of immunotherapy for you?

caradivs | @caradivs | Nov 30, 2018

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

lesliestump | @lesliestump | Dec 4, 2018

In reply to @1kjewels "Is there anyone else out there that has Adrenal Cancer?" + (show)

I was diagnosed with stage III adrenal gland cancer November 2017 . I also had developed severe Cushing’s. Due to the Cushing’s I started chemo immediately. 26 treatments all together. Had two surgeries June 2018 to remove tumor on my adrenal gland and lymph nodes in tumor bed and neck followed by five weeks of radiation. Currently on 6000 mg mitotane daily.

1kjewels | @1kjewels | Dec 4, 2018

In reply to @colleenyoung "Oh my, @1kjewels. I do hate when members don't get connected with someone. It doesn't seem..." + (show)

Hi Colleen!

I am waiting to hear back on the immune therapy and clinical trials. My insurance initially denied the test for immune therapy so they are working on that.

Thanks for helping me connect with people! 😄

1kjewels | @1kjewels | Dec 4, 2018

In reply to @caradivs "Hi @1kjewels I have just been diagnosed with this rare cancer I am only 32 and..." + (show)

Hi @caradivs !
I’m so glad to talk with someone in the same
position (more or less)! I agree, it’s almost impossible to find anything positive on this type of cancer and it’s really frustrating to find that there isn’t all that much research being done and the drug of choice is from the 1960’s! It seems just crazy to me
Have your doctors suggested any alternatives yet such as clinical trials , etc.? Let me know how you do on the Mitotane. I have been tolerating it quite well and have had my dosage increased once so far. Waiting to hear back on a blood test to find out of they will be increasing it again. Fingers crossed that it works!
Good luck to you!