Sylvia, I was diagnosed with the same disease as your husband in March. Would you be so kind as to exchange info by email? Please private message me. I would be very grateful. Joe

Hi Joe,
Welcome to Connect. You'll notice that I removed your personal email from your message. To exchange personal contact information with another member, we recommend using the private message function. We don't want you to get unwanted spam.

I can understand your wanting to connect with Sylvia privately. Please keep in mind that sharing on the forum affords the benefit of hearing from several people with salivary duct cancer. Joe, we look forward to getting to know more about you. If your comfortable shareing, can you tell us what treatments you've had or are having? How are you doing?

Colleen, yes, I was diagnosed at Mayo with salivary duct carcinoma of the parotid gland with distant metastasis stage 4. The cancer tested androgen receptor positive. I am 10 weeks into 12 weeks of my first treatment - androgen deprivation therapy or hormone therapy. Only mild side-effects. Decisions on staying the course or changing therapies are upcoming this month. Sylvia's husband is the only person I have found to have the same cancer. It would be helpful to hear from others with this rare cancer. Thanks.

Joe, Ken completed his 11th immune therapy treatment today with Keytruda. His recent scan showed mixed results, but the tumors are measuring in millimeters rather than centimeters now, so we are thrilled. We hope to complete 17 infusions before a break.
I am interested to hear of your progress with androgen deprivation therapy.