The last month has been a roller coaster. Blech!
I started on the androgen receptor clinical trial with bicalutimide and ribociclib on 6/16. There were minimal side effects, but I was continuing to have pain in my back, hips, and groin. More appointments, more scans, and, as it turns out, more cancer…in my bones – vertebrae and pelvis. Well, at least there was an explanation for the debilitating pain I’ve been experiencing increasingly over the past few months, but not news we wanted. Still, I remained optimistic that the study drugs would help.
But the scan from last Monday showed overall progression in both the liver and bones. The chemo did not work to shrink the tumors, not even to slow the bastards down. It was not an easy pill to swallow. This chemo wasn’t the absolute last resort, but devastating news all the same. Plus, when there was the possibility that the treatment was working and I had that hope to cling to, the chronic pain was difficult but bearable. Once it became clear that the pain was a result of increased tumor burden, it was like a switch. Knowing that you are dying and FEELING like you are dying are very different things. My old companions Insomnia, Depression, and Anxiety were most definitely rearing their ugly mugs again. Boo, cancer, BOOOOOOOOOO ON YOU!
Our Plan B was to try a regimen called DAE (Doxil, Avastin, Everolimus) that has shown a lot of promise in treating metaplastic breast cancer. The individual drugs are FDA approved, but not to use together for my type of cancer (triple negative). My onc had to get internal approval through the hospital just to consider using the combo. Much of the research behind it is based on the mutations in my tumor cells that allow them to grow fast and furious, so these drugs stop the insanity of rapidly dividing bastard cells. Both the gene sequencing done by Foundation One and review by the UW Molecular Tumor Review Board recommend everolimus specifically. And now insurance refuse to authorize everolimus saying that I need to try and fail with other drugs (that have, like, zero chance of affecting my particular cancer) before they would approve it. This is Navitus, not GHC, being dick bags. So, my onc sent back a very ‘dramatically worded’ appeal with lots of evidence from medical professionals who know what the fuck they are talking about, so hopefully they will listen to reason and take their heads out their asses so that I can, you know, stay ALIVE. Who knows how long that will take…
In the meantime, we headed to MD Anderson in Houston to get the second opinion from an oncologist that specializes in metaplastic carcinoma (I’m in a kitschy little hotel bar having a cocktail right now…). Wouldn’t you know it, she suggests DAE as the frontline treatment. She had a couple suggestions that have worked for other patients in order to get the everolimus, including appealing to the pharma manufacturer to get free/reduced access or switching to an IV (over oral) version of the drug. We’ll keep on keeping up the fight. As grateful as I feel for the amazing access I have to a research hospital, and decent insurance, I am reminded over and over that our healthcare system is straight up bullshit.
We decided somewhat last minute (last week) that we were going to say to heck with it ALL and go to Vienna for a summer vacation starting this coming Saturday, July 22 and returning Friday, August 4. I KNOW, right? How exciting! We’re going to see Theo kick some ass in the World Championship beach volleyball tournament there, and wind our way around Austria, Germany, Hungary, and maybe some other places with old buildings and scenic vistas… I haven’t had a German class in 20 years, but it’s slowly coming back, and I think the immersion will be fun. Kevin knows a little, too, and Maggie can take care of any conversations that need to take place in Spanish…so, we’re good!
That’s the update for now. We continue to appreciate all the support we receive in all the ways it is offered. Thanks for being awesome folks, folks!