The past few months have been awesome. We took a vacation to San Blas, FL and before that, Lori spent a week in D.C. touring with her dad. We just returned from IL where we spent a great Thanksgiving with Lori’s family in Springfield. That’s the man version of what you’ve missed for 3 months. Deal with it ladies.
Last month, Lori noticed a small bump forming on her skull about the size of a pimple. It didn’t hurt but it was strange and of course we thought it might be cancer-related. Recently, we noticed that it had grown in size. Also, she noticed two new nodules forming, one on each breast. Finally, her pain, particularly in her lower back, was increasing and waking her at times in the night. To us, those are all signs of disease progression, so I made an appointment to see Dr. Marinella in Dayton. We got in to see him that afternoon (last Tuesday).
He laid to rest our fear about the skull lump being brain metastases. However, he didn’t rule out the possibility that it was a spread of the cancer to the skin or tissue lining the skull. It was good to hear that it was almost certainly not brain trouble, but it was concerning that the chemo may not be effective anymore. We made an appointment with Dr. S in Indy to get his opinion and to check on potential options for the next line of treatment. We also scheduled full body scans to be accomplished on Friday (last Friday) in Springfield while we were with the fam in IL.
Lori had her scans done last Friday, and we drove home to Dayton yesterday. Today, Lori and I drove to Indy to meet with Dr. S. He reviewed the results of the scans which actually didn’t tell us much at all. That’s good in a way, because they didn’t show any big new problems. However, Dr. S. was concerned with the skull lump (lumps actually because a second one formed near the first one). He thought they were likely cancerous which indicates disease progression. However, he was quick to dismiss any possibility of it being a brain issue. It is likely just skin nodules like the ones on her breasts. He ordered a biopsy, and the chief of surgery (Dr. Dunnington) actually showed up about 10 minutes later and performed the quick and easy procedure. We should get the results of the biopsy tests this Wednesday or Thursday. If it’s cancer, it indicates disease progression, and we’ll look at new treatment options. If it isn’t, we’ll stay on the Cisplatin chemo. Dr S. thinks it is likely cancerous.
By the way, it was awesome to see Dr. S. again. He is still the best. While we were enjoying turkey last Thursday and relaxing with family, he was working back-channels to try to get Lori approved for a very expensive PARP Inhibitor drug (Olaporib). He is pursuing the drug “off label” meaning it is designed for a different type of cancer than the one the patient has. Lori is BRCA1+ and has TNBC but the PARP Inhibitor is FDA approved for BRCA1+ for patients with Ovarian cancer. The key is that it’s focused on treating cancers with patients who are BRCA1+. That’s our “in”. Although it isn’t approved for breast cancer yet, Dr S is a big believer that this Inhibitor would be a very good options for Lori’s cancer. Anyhow, to get approved for an off label option, especially one as expensive as this one, is very difficult to do. Dr. S. said his office is the best in the nation at getting it done though. He has a team from the genomics lab which is dedicated solely to manipulating insurance companies to approve the off label options. Lori’s request was initially denied, but the team appealed. The appeal was also denied. They submitted a third time as an “urgent plea” and we are awaiting the results of that request. If that is denied, they can apply for “compassionate use” which would be free to insurers as the drug label would provide the drug free of charge in the name of compassion. The strategy is basically to wear down the insurance company with requests much like Andy Dufresne and his masterful work on the library expansion team.
So we are awaiting the biopsy results and then a decision will be made. In the meantime, pain control is the focus. Her pain pump output was increased by 10% last week, and that helped for a while but today the pain is beginning to flare up again. It isn’t extreme pain but any increase is a concern for us considering the way things turned out last May when the pain last flared up beginning this way. We’re praying for wisdom, complete pain relief, and complete healing.