Salivary Gland Adenocarcinoma NOS with bone metastases: anyone else?

Posted by jensue @jensue, Apr 19, 2023

Hi there -- my MIL was recently diagnosed with salivary gland cancer (Adenocarcinoma NOS) with bone metastases. This was discovered through spinal fracture/compression, also resulting in loss of mobility in her trunk and legs on top of the cancer diagnosis. She's largely bedridden right now.

Salivary cancers are rare -- has anyone dealt with Adenocarcinoma NOS or other salivary gland cancers with bone metastases? She is starting chemo and they will assess after 2 to 3 rounds to see if is helping and switch treatments if not. My understanding is there is little known about stage 4 salivary gland cancer so it's a lot of trial and error.

Looking for any stories, advice, etc.

God bless everyone who is fighting cancer or supporting loved ones who are

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Apr 22, 2023

Hi @jensue, welcome. You're right salivary gland cancers are rare. It must've been a shock to hear that your mother-in-law had a spinal fracture and then to learn that this was due to metastatic salivary gland cancer. You are not alone. Fellow members like @nursemaven @thelisamarie @kkelly1023 @dakotapat @garethseltzer @clevyjam @sugardog and others also have experience with salivary gland cancer.

While not salivary gland cancer, @sepdvm lives with metastatic head & neck cancer.

When will your MIL start chemo? Do you know which chemo?

Sue, Volunteer Mentor | @sepdvm | Apr 22, 2023

Hello @jensue this forum is a good place to follow for first hand information. While my cancer is Squamous Cell Carcinoma of ear skin origin, not Adenocarcinoma, I am dealing with metastatic disease that has been controlled for over a year with one of the newer Immunotherapy drugs. This has been an 11 year battle since my first surgery 4/23/12, with 4 different mets, 3 more surgeries, and now this Cemiplimab drug. My advice is to request tumor genome testing as that will point you toward targeted or immunotherapies if this chemo is not effective enough. New treatments are always being researched, so have a doctor/health care institution who is up to date on current trends. Support your MIL with healthy diet suggestions and explore the complementary therapies available to help ease chemo side effects and strengthen her immune system. A book to live by..... How Not to be My Patient by Edward Creagan MD. HA is a palliative care doctor at Mayo Clinic and I love this book for great suggestions and just giving hope in a serious situation. Good luck to you both.