As far as I understand it, increased metabolic activity creates higher SUV value on a PET scan. In more understandable terms, the places where there is more activity shows up brighter on the PET scan. Brighter images on the PET scan means the cancer has “woken up” or is starting to wake up; that the cancer is no longer held in check by current medication regimens.
That’s what showed up on my PET scan on Monday.
The new lesions from August, 2019 when the cancer outsmarted Ibrance are active again, along with older lesions that had previously calmed down or, as we hoped, had died completely. That hope was dashed this week. As much as we think we’ve outsmarted the crazy resilient cancer cells, they prove us wrong at times.
Being wrong is a horrible feeling and even more so in this context. It’s literally life and death. My life and my death. The weight of that, to be making decisions that will literally affect the length and the quality of my life, cannot be adequately described. It’s stressful and the pressure is beyond explanation.
While the cancer cells are getting themselves active again, the good thing is that there are no new lesions. There is nothing new in my bones and the cancer has stayed inside my bones. For a variety of reasons, this arrangement is what we need to keep in place as long as possible. Basically, as I understand it, we caught the impending progression early enough that we may have some hope of reining it in.
In light of the fact that Piqray is so new, the information/protocols describing what to do in this situation are limited. As my medical oncologist said, we’re in a gray area without much of a compass at this point. So, today, in our appointment, we went back to the basic science. After reviewing my research and hers, we got a science researcher on the phone; a science researcher who is working on a drug to improve the efficacy of Piqray. He’s in a unique position to be able to provide information to inform our discussions.
And so we came up with a plan for the short term. As I’ve often said, we terminal cancer patients literally live scan to scan, unable to make plans until we see the results of the next scan. These next three months are going to be quite interesting in many ways and not just in my household.
The current plan:
- I’ll stay on Piqray, Faslodex, Jardiance, Zometa and my regular list of supplements and vitamins.
- Tomorrow, I’m adding Metformin CR back to my regimen. I’d been on Metformin when I first started Piqray and then I switched over to Jardiance for a variety of reasons that are no longer relevant. The two drugs (Metformin and Jardiance) work very differently on the insulin and glucose in my body, and the hope is that they will work in a complimentary way. It is the insulin, after all, that fuels the cancer via insulin receptors. My insulin, while under control, is higher that we’d like it to be.
- After chemo education next week, I will also add Kisquali. Kisquali is another CDK4/6 inhibitor. I was previously on Ibrance and because I received 24 months of stability while taking Ibrance, we are going to see if adding Kisquali will help. We’re not willing to let go of Piqray yet and it’s not able to keep the cancer controlled on its own. So, we’re going to help it out a bit and see if that works before switching up treatments again.
- Since Kisquali can cause some heart issues, I’ll be getting regular EKGs to ensure that my heart is doing what it’s supposed to. Also, I’ll be getting more regular blood tests to monitor my liver function and magnesium levels. I’m sure I will get a really detailed education on this drug just as I have with all of the medication I’ve taken.
There are no contraindications with taking all of this medication together; at the same time, it’s not something that happens often. I told my doctor that if she wants to write a paper about our experiment, I want to be a co-author. The experiment has a short shelf life and we may have to make adjustments well before the regularly scheduled three (3) month scans.
Here we go …