I am new here and never heard of this site until I stumbled upon it last week. The sad part is I have been a Mayo patient since 2013. I am stage IV and had mets to my vertebre, 2 ribs and supposely my liver (which a biopsy proved I did not) but was refused Oligometastic surgery that could of cured me. A radiologist determined I was too far gone and I was given the 6-12 months death sentence. My oncologist sent me to another cancer hospital to try out for 2 trials that used immunotherapy. I flunked out of both after 2 lung biopsies and 2 brain MRI's. Everything came back "inconclusive". I went back to Mayo and did 9 months of a double chemo, did radiation to my hip/pelvic when another blob popped up on the CT scan and begged for immunotherapy, which had not yet been FDA approved. The immunotherapy is Nivolumab (Opdivo) and I have been on it since Sept 2015. All bone mets are gone, primary lung tumor gone and 1 lymph node has showed a tiny progression. When I asked about molecular testing, liquid biopsies, etc, I am told they do not offer it. Six months ago I got a staph infection, yeast infection from the antibiotics and then fungus. I started feeling horrible and complained for the 1st time since my diagnosis. Long story short, I finally was sent to a GI doctor and he set up a bunch of test. I suffered from horrible chest pain which feels like trapped gas, moves around in the chest cavity and goes through towards my back. I have had 2 ECG's, an endoscopy (lesions found), CT scan every 12 weeks (a hiatal hernia found), nuclear radiation ultrasound to see if my port is still good, breast ultrasound, nuclear bone scan and 2 echocardiograms. Went to a Cardiologist (after waiting for months to get in) and was told last week that I have Pericarditis (inflammation of the pericardium) which can be caused by an infection, fungus, bacteria, etc. I was thrilled to be diagnosed!! Now I received my last echocardiogram report that shows no pericarditis. They are still treating me with drugs and I will speak with them again this week. I just wanted you to know that there are others out here that go through the "falling through the cracks" at their facility. I get that horrible feeling that my doctor is so overwhelmed by other patients that she just doesn't have time for me. No one at my Mayo has had as many Opdivo infusions (at least 65) so they have no one to compare me with. Why have they not offered your husband immunotherapy??

Hello @seaspray! Welcome to Mayo Clinic Connect! Thank you for posting and connecting with members in this group.

You may be interested in reviewing and posting in this thread- https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/. You are obviously a fighter and I found your message inspiring and I believe others would benefit from reading your posts as well.

Were you diagnosed in 2013?

Yes, I was diagnosed in August of 2013. I will try to check out the link you provided later in the day. My time flys by and the days seem to be shorter!!