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Mitotane for ACC

Mitotane for ACC

Posted by Mike66 on Nov 15, 2019 10:01 am

As I make my modified lower sugar bran muffins, I became curious if anyone has had Mitotane treatment for Adrenal Cancer and how that rolled out for you . I have just begun treatments and understand the dosage is increased over time. 

Re: Mitotane for ACC

Posted by Wendy Tea on Nov 25, 2019 12:53 pm

Lianne_adminCCS‍ , is there anyone that you can connect with Mike66. .?

cheers
wendy Tea 
Healing takes time and opportunity. Wendy Tea

Re: Mitotane for ACC

Posted by Lianne_adminCCS on Nov 25, 2019 7:22 pm

Hello Mike66‍ 

How is your treatment going so far? Experiencing much in the way of side effects?
I did a search for Mitotane on the site and no one has mentioned it. It may be possible someone has done this and just not mentioned it.
However, I did talk to one of our Peer Match coordinators and found out they have a volunteer that indeed  do Mitotane for ACC.
The site is https://match.cancer.ca/. You would need to register and search for a volunteer with that diagnosis.
Once you connect with a volunteer, the match is done over the phone going forward. Not sure if this interests you but wanted to share that option

Lianne

Re: Mitotane for ACC

Posted by Mike66 on Nov 26, 2019 11:32 am

Thank you Liane and others, I began first round of chemo this past week and am glad it is only a two day hospital visit with oral medication for two days afterwards along with the Mitotane daily. Yes Mitotane is not so common.

Re: Mitotane for ACC

Posted by Lianne_adminCCS on Jun 29, 2020 3:36 pm

Hello Mike66‍ 

Checking in to see how your treatment is going? I wanted also to introduce you to Darvi‍  who is a new member and recently diagnosed with adrenal cancer. Though not identified as being on Mitotane, I thought it might help to connect the two of you.

Take care
Lianne