Last week’s 3 CT scans showed some response to the new (since-December) chemo combo in my chest/abdomen/pelvis: very good news, though not all the new mets are gone.  Some are just unchanged or smaller.

My various brain/spine MRIs showed leptomeningeal effects still in the central nervous system but nothing worse than late January when we started the intrathecal Methotrexate twice a week.  My MRIs showed a variety of effects in the brain, always so hard to puzzle out because so much has occurred in there over the last 2-3 years, but nothing too alarming.

The weekly cytology of my CSF showed few, then no circulating cancer cells. So that is excellent news.  I can back off to one IT chemo treatment per week now instead of two–freeing up a day in my week and also maybe reducing the fatigue I am struggling with.

So overall seems like progress, on paper anyway.  But in my real daily life I am super-frustrated with my lack of physical energy and muscle strength, and maybe even more frustrated by how easily my brain seems to tire.  And then there are the mounting number of manual tasks I just can’t do anymore as my hands get more and more damaged by chemo-induced neuropathy.  More on that in a couple of days.

Underway:

• Discussing adding penfluoridol, an oral, older-generation anti-schizophrenic drug, for its cross-the-BBB effect on brain mets.
• Looking into some trials of experimental drugs that might match my triple-negative hereditary-BRCA1 tumor profile.
• Actually seeking out a detailed tumor profile–available not through my oncologist’s practice but from a private lab company.  Requires a fresh biopsy, though…
• Working through details of swapping in Methadone for morphine to see if it improves daily hand/knee/foot pain. Palliative care MD suggests it and palliative-care nurses do close follow-up for 2 weeks, but apparently my oncologist is expected to be the prescriber, though it’s not his area of knowledge. So still working that through until we are all comfortable with trying the switch.