It has been a long time since I’ve written. A lot has happened. And in a lot of ways we are right back in the same place.
Let’s Catch Up Some Time
The last post I wrote about having a ton of side pain and dealing with pain meds. It turned out that pain was because of a met that was pressing on my spine. I was able to get that spot radiated, and the pain disappeared. Yay!
Since then I have also tried a couple of different chemo therapies. I tried Trodelvy for three cycles, one day a week for two weeks then one week off, for a total of nine weeks. It did not work. I switched to Enhertu for nine weeks, and that didn’t work either. The spot in my liver grew from something like 1.2 to 2.2 cm.
So it became time to look for clinical trials. I am very grateful to my dad who had done a ton of research ahead of time and even got me in touch with Dana Farber in Boston. I flew out there and to Moffit in Florida, which I was able to get an appointment with thanks to my previous trumpet professor Vince DiMartino!
Trial and Error
Interestingly, my cancer team at the time turned out to be no help. We met with the nurse practitioner who gave us the news about the Enhertu not working and seemed very concerned about the spot in my liver. She seemed to be saying that now was the time to look for clinical trials…and also that she would be no help looking for trials. She said it would be a “full time job.” I remember thinking, yeah, your full time job…
We ended up getting in touch with a new facility which has a clinical trial in town. We found out about it when we went to Boston. Why I had to fly across the country to find a trial near me, I do not understand. Anyway, the new oncologist showed us my scans and made things seem a lot less scary. He ordered a liver biopsy and said he would test for B7-H4 which is a protein my cancer would need to express in order to qualify for a different trial in OKC. He also said he would get in touch with Wash U in STL.
I started to get set up with pre-screening appointments for the trial in OKC. It is a 5 hour drive there. I made the trek on Friday for a brain MRI. Yesterday I was driving there again for an eye appointment. I was half an hour out when they gave me a call and said I had new brain mets which meant I was ineligible for the trial. I turned around and drove 4 and a half hours back home.
Back to Square 1
In the meantime my mets have started to spread and are causing me pain. I have a spot pressing on my SMA that is giving me a lot of tummy pain. I went to the ER for that and they told me to go home and take Tylenol. I went home and took morphine…until that ran out.
I had also gone back to the ER for what I felt like was some pretty sudden onset liver pain. I was worried, even though it was a week out from the liver biopsy. It turned out to be a new met in the very bottom part of my lung.
After scrambling and calling different doctors, different pharmacies, and my insurance, I finally got my pain meds refilled. The morphine helps a lot but it doesn’t get rid of the pain. So I am back where I was. In pain, struggling to get pain meds and poop, and wondering what to do next.
I have an appointment tomorrow with the new oncologist to talk about possibly radiating the mets in my brain so I might qualify for the trial in OKC. We will also be talking about the next steps treatment-wise. There are some standard of care therapies I can try, and we will also look at other clinical trials.