As most of you know, I get a quarterly PET/CT imaging test to determine if the cancer cells are behaving themselves. October 11, 2021 was my most recent PET/CT and it wasn’t what we’d hoped for and, frankly, only happened in October because I’d advocated for it since I qualified for testing every six (6) months in light of my stability. But, I told my doctor that I couldn’t deal with that long between scans from a mental health perspective and I appreciate the fact that she listened to me and sent in the referral.
A few hours after the actual scan, which was at 8:30 a.m., we found out that the results weren’t the best. Here’s a picture of the pertinent (original) findings …
My medical oncologist called me a few hours after I saw the results and I already had an appointment scheduled with her for the next day, so I was able to get input quickly. By Friday after the Monday PET/CT, we were in Jacksonville at the Mayo Clinic getting a second opinion and exploring trial options and I’d checked in with numerous friends and researchers for some thoughts.
As I understand it, there are a few areas of concern.
First, are the two new lesions in my bones, one at C3 and one in the right 8th rib. Both of these correlate to some new aches that I’ve been dealing with, so there’s that. Thankful the new spots are small and still contained within the bones.
Second, there are multiple bones mets that are increasingly active. This means that the metabolic activity is higher, showing that there are more areas where new mets are likely to form. Again, thankful that this activity is still in the bones and there aren’t multiple new lesions to deal with.
The conclusion from these two areas/issues of concern is that the medication regimen I’ve been on isn’t working. Since this is the second time that Piqray has failed me (the first was in March of 2020 when we added Kisqali), we are definitely going to drop Piqray. Initially, I’d mused that perhaps we just drop Piqray and keep Kisqali, but both medical oncologists I met with (my primary doc and the second opinion at Mayo) were not supportive of that idea. And this is a good confirmation that it is good to listen to the people who went to medical school even though I’ve many ideas of my own.
The conclusion was to move to Verzenio, which will be my 3rd line of treatment since my diagnosis of MBC in 2017. Verzenio is in the same class of medication as Ibrance (first line of treatment) and Kisqali (part of my second line), known as the CDK4/6 inhibitors. This class of medication is targeted therapy in that it targets a specific pathway in the cells to inhibit or block a way that cancer cells like to use. We also did a TON of bloodwork to look at a variety of things, including getting a liquid biopsy called Guardant360, which I’ve gotten twice before with no helpful results. This is a downside of bone only mets, it’s so hard to get good information about the mutations occurring within the cancer cells as we only have my original breast tissue removed in 2017 to test.
The third area of concern is the pesky thing in my right lung. I’d previously met with a pulmonologist to explore what to do about it since the first time it showed up was after I’d gotten the first two injections of the Pfizer Covid vaccine. The thought that it was from the vaccine and/or pneumonitis was ruled out and we’d decided at that point to just keep watching it. I also got a CT of that area a few months ago and again the conclusion was to watch it. This time, though, that SUV value, which indicates activity raised some red flags with the radiologist and the medical oncologists. I did consult with a pulmonologist who opined that it could be that the alveoli may have gotten tethered to the pleura, but that with my history it was more concerning and we should probably consider getting it out, plus the size (more than .8, puts it into the category of actionable).
So, off I went to a cardiothoracic surgeon (just another specialist to add to the list!) to see if excision (getting it out) of the lesion in my lung makes sense and, if so, when.
And we discovered that that increased activity based on the SUV value was a typo.
Yes, you read that correctly. Between the radiologist, whoever was taking his dictation and me getting the scan results, the actual SUV value of 0.83 (a decrease) became 4.83 (a substantial increase). We spent about a week pretty freaked out that I had my first soft tissue met and that meeting with the surgeon to discuss surgical options.
Once we found out that I didn’t need surgery on my lung and the mets are still in my bones, we exhaled a little and shifted to focus on detoxing from my second line of treatment and adjusting to the side effects of my third line. I spent about a week in bed with serial headaches, major body aches, and general misery from Piqray — definitely working on following up with Novartis and filing a report with the FDA. At the end of that transition, I ended up in the emergency room with bladder inflammation, which has now been an ongoing issue to address.
As many people have said, this #MBC experience is always providing new issues/experiences. Dealing with the healthcare system as a terminal/forever patient presents its own challenges and difficulties that frankly flatten me regularly. I’ll update more when I know more!