Navigating the Gray Areas of Cancer Treatment

Just popping in with a quick update as I’ve been remiss lately in keeping everyone updated. When so much is happening and changing in a short period of time, it’s easy to forget that everyone else isn’t doing this strange one foot in medical offices and the other in the real world existence. Periods of disruption to the routine/schedule are pretty consistent in this MBC experience and I have to say that it’s a lot to handle when you have to juggle as much as is going on in our lives, but we persist.

A quick recap:

• PET/CT in June demonstrated that Enhertu might not have a handle on the cancer in my body any longer. There were three new bone lesions and a long list of “old” bone mets that were “waking up” (a/k/a starting to show more metabolic activity). Liver, thankfully, is still clear and there were no new visceral mets seen.
• The odd thing about this PET/CT result was that bloodwork wasn’t fully matching the scan results and multiple providers that I check in with during decision-making periods weren’t convinced I should change treatment, another first.
• The interim plan was to increase the dose of Enhertu back to the full dose for at least two cycles and then quickly rescan, which is what happened in August. We’d previously dose reduced because of all the side effects, so it’s been rough to have to adjust back to more fatigue, more GI stuff, more nausea, etc., but as usual we do what needs to be done.
• The PET/CT in August demonstrated that the long list of older metastases had gone back to sleep (my explanation for the cessation of metabolic activity), one of the new skull lesions dutifully fizzled out, but two of the new lesions hadn’t gotten the message. One of my providers called these stubborn spots “escape lesions,” which was new terminology for me. Of the two escape artists, one is in a rib and isn’t all that active, but one of the skull lesions is an over-achiever with an SUV that went from 5.3 to 10.6 between June and August. One of the radiation Nurse Practitioners said it was “announcing itself,” another new term that resonated with me.

In my last post, I talked a bit about my fractured pelvis, which was lighting up like crazy in June. By August, the SUV value went way down, confirming the suspicion among multiple providers that the increased metabolic activity was actually the activity of healing and now I have an orthopaedic oncologist following that fracture for the foreseeable future. Still no pain, so thankful for that, but definitely watching carefully since it appears I disrupted some of the scar tissue when I fell in March. If anyone is interested, I’ve included a picture below of a recent x-ray with the fractured area circled — no additional hardware has been recommended as of yet.

I’m heading up to Mayo in Jacksonville in the wee-hours of the morning on Wednesday to get a repeat Brain MRI, meet with the radiation oncology group, and perhaps make some decisions about radiating that escape lesion in my skull. Since the lesion is closer to my brain than the outside world, albeit still totally encased in the bone, I understand that it may be necessary to radiate sooner rather than later to ensure that the least amount of my brain is affected and I may have to deal with some permanent hair loss too. Juggling this possible treatment decision with the various inclusion and exclusion criteria on a few trials that I’m eyeing and one that I’m scheduled to be screened for at Dana Farber at the end of this month. And I haven’t mentioned the consults to address the possibility of a biopsy of that skull met, the echo that came back improved with no mention of blood clots in my heart and the potential for getting my port back … nothing is easy or simple when MBC is the culprit and it’s never one thing at a time.

More updates coming soon.