Adrenal Cancer: Anyone else have this?

@lesliestump I thought replied to you yesterday, but I must have done something incorrectly! So happy to meet you! How are you tolerating the Mitotane? I am still waiting to hear back on test results to see if they will increase my dosage. Which campus are you using? I am at Phoenix currently. I also just learned today that the manufacturer that was making this drug is not going forward! I was pretty upset by this news, but learned later today that someone else will be taking over production. Thank goodness!!

Hi! @caradivs How is everything going? Have your doctors come up with a plan for you yet?

I had surgery for adrenocorticoid cancer at Mayo Clinic in Rochester in June 2018. 7 cm; they also removed my gall bladder. Decided not to take mitotane. Have had two scans since then, and both were clear.

@annadamscleary How wonderful! I hope your scans continue to be clear! I Have stopped Mitotane and will be starting chemo next week. Hoping to kill some of these cells!!

Welcome to Connect, @annadamscleary

Anna and @1kjewels, I'm curious to know what made each of you decide not to take mitotane?

@colleenyoung Hi Colleen! I actually started taking it after surgery and radiation. After two scans showing the metastasized spots on my lungs growing a little, I got a second opinion at the Rochester campus. We reviewed all the options and decided to be aggressive and try chemo. It’s still only 30-50% chance of working, but I thought I needed to pull out all the stops and try.

It’s scary and now that it’s only a couple of says away, I am really nervous and hoping I made the right choice!

Anyone else facing this dilemma?

Hi all. I hope this works. Thank you Colleen for getting me in touch with this group. I was diagnosed with renal cancer Jan 24, 2016. It wasn't until surgery Feb 17, 2016 that I found out that I actually had ACC. Yes very rare. Post surgery had radiation and then onto Mitotane. I semi-tolerated the Mitotane but quit after several scans that continued to show growth. I currently have tumors in liver, lungs and lymph nodes. I am on a immunotherapy drug called Keytruda. All we are trying to do now is get some control. We are currently trying to get my insurance to pay for Y-90 Treatment on the tumors in my liver. Luckily I have a great support team in my family and friends. Aaron

@anderson2742 Hi Aaron! Thanks for sharing! Also was in Mitotane. While I tolerated it well, it didn’t seem to stop growth for me either. I got a second opinion from the Rochester campus and the doctor I saw had had some success with chemo. I decided to stop Mitotane and try this. Starting Round 3 today with a scan in about 4 weeks. Praying this shows some success!

Mine has spread to lungs and now liver as well. Have you had luck with the keytruda or is it too soon to tell at this point?

I did try 4 different types (combinations) of Chemo, prior to the keytruda. To early to tell on keytruda. Last scan was inconclusive. Will work on another 5 rounds. Side effects are not pleasant. Not very common but I am having server joint pain. Especially in my shoulders. I will keep you posted. I hope the chemo will help get some control over this for you. I have just entered year 4 of this battle. I really struggle with stopping treatment. Whenever I have been in between treatments (usually no more than a week) I have always felt great.

@anderson2742 Hi Aaron! Let’s keep in touch!! I’m very interested in your treatment!! Praying that it’s successful for you and could possibly be a road for many of us searching for the answer as well! Julie