How Do We Monitor? Let Me Count the Ways ...

As many of you know, we are back to square one after the Taxol quit working. Why? Because we didnt know when the Taxol was no longer effective.  Because my cancer does not show up on any of the traditional cancer markers in the blood work and we can only do imaging every couple of months; (1) insurance won't cover more than that and (2) there is only so much imaging a body can take in a lifetime; rationing is important, especially since I did major radiation 20+ years ago to get rid of thyroid cancer. Somewhere between my PET on 12/2 and the CT on 1/31, the Taxol quit working. All of my tumors grew some bigger than where they started, including our baddest of bad, Voldemort.

When I met with Hannah last week, I talked to her about my frustration in how we are monitoring my cancers response to treatment. We know my cancer does not show up in any tumor markers, so take that off the table. I told Hannah it's time we think outside the box.

I suggested we use Ultrasound. Voldemort was initially discovered using Ultrasound, it is far less expensive than other imaging options, it is less harmful to my body long term. To me its a win/win to be used in between PET or CT scans. Hannah agreed. Hannah says my arguments are valid and my suggestion is a reasonable request. Hannah will talk to Dr. Kocs.

Less than 30 minutes from my chat with Hannah I am getting a call from the nurse. Dr. Kocs agreed with me! YES!! I see it as a small victory and a great collaboration between patient and doctor. Peeps …. sometimes you HAVE to be aggressive about your own health care. This was one of those times, and it paid off.

The Ultrasound has been approved by insurance. I am waiting on ARA to get back to me on scheduling the baseline Ultrasound, then a second one a month later. I don't believe we will be looking at all the tumors, but we will definitely be looking at Voldemort because he is the one that is most dangerous, location and size wise. With this new monitoring strategy, we will definitely know sooner rather than later when a treatment quits working so we don't lose too much headway. I hate losing ground!!

Tomorrow is my second round of shots. Plus labs. Can't wait! I am curious how my white and red blood counts are doing. I looked over last week's blood work and I am seeing a slight drop, still within normal range, but a drop. I was told they expect "stay away from crowds" levels after three weeks. That's why I only do Ibrance for three weeks, then have a week off; to give my body a chance to recoup. Fingers crossed I amaze the doctors again!!