I am writing this from up in the air. I am, with my parents, on my way to Sioux Falls, SD to visit Avera Precision Oncology.
I have been somewhat interested in precision oncology since my Stage lll diagnosis back in 2014. I had read about testing different chemo combinations on biopsy samples in a Petri dish. Although Petri dish results are not always the most reliable, it made sense to me, to figure out what chemos worked best for a person’s individual cancer instead of just shooting in the dark.
My interested continued when I read on a message board about a tumor mutation that made a patient more resistant to Herceptin, which was the miracle targeted therapy I was on. I printed out a copy of the article and brought it to my oncologist, who basically told me these mutations existed and they were a concern but they didn’t have the medical technology to eliminate those mutations yet. Basically, all we could do was treat me with standard of care and hope for the best.
After my metastatic diagnosis, I had genomic testing done on the brain tumors that were surgically removed. The results came back showing six mutations, not including Her2, but including the one I was originally worried about in 2014. I was glad to have the information but wasn’t given much guidance on what to do with it.
Over the past 18 months, I have been standing back and absorbing all the information I could get about tumor mutations. Last fall, Beth Caldwell brought to my attention a precision oncology clinic led by Dr Leyland-Jones. This clinic uses combination therapy to target multiple mutations at the same time and uses drugs off label. Basically, with my multiple mutations, if we just address one, the other ones will find a way to grow. So we need to find a way to target all the mutations.
I have Her2 positive cancer, which is very aggressive, yet has a lot of treatment options, including targeted therapies in the place of harsh chemo. I have standard invasive ducal carcinoma. But I’m not responding super well to the targeted therapies, most likely because of these mutations. I had three different targeted therapies for early-stage cancer and still progressed. Then I got nine months out of a fourth targeted therapy, but even adding the Evil Xeloda chemo to it didn’t make the drugs last me longer. I had mild progression. We switched to two targeted therapies along with an infusion chemo to tide me over until I get drug recommendations from Avera. They will probably take a blood biopsy to see if any mutations disappeared or new ones appeared. Then, we will probably need to fight to get the drugs approved as they are often off-label.
I believe we are in a critical time for cancer care and that precision medicine is the future of oncology. I’ve talked to some who have gotten to long-term No Evidence of Active Disease of the Avera protocol. Their overall response rate is pretty great considering that many of their patients are heavily pretreated. I’m not saying this will cure me, at least not for some years. Hell, it might not even work at all. But I do believe this is my best chance to turn my cancer into a chronic, manageable disease.