YA Jaw Update: Part III, the return

Well, shit. Apparently I haven't updated this thread in forever.

The main side effect of the oral chemo has been tiredness. Like all-the-time-tiredness. At the first followup they found that my thyroid hormones were well below normal range, and started me on the lowest possible dose of Synthroid. Apparently it takes a month for it to really take effect - and I did have moderate improvement by my next bloodwork a month later. It got me up to literally the lowest digit in "normal" range. Asked for the next higher dosage, was told it was outside their expertise, they got me to normal, go see an endocrinologist. Endo promptly bumped me up to the next higher dosage. A month later (which is maybe 10 days ago) - followup bloodwork showed higher thyroid hormone levels, though still below median.

However! I actually felt like I had energy, and I've actually been up and doing more than the bare minimum since then. Yay!

I'm tired right now, but that's due to actually getting sweaty getting a bunch of stuff done in the yard today when I could peel away from work.

First followup imaging on the tumors resulted in "stable" - which is good news, but the bare minimum for good news. Next imaging is late this month. Hoping for shrinkage.

WM314 said:

Remind me — are they doing the BRAF-targeted stuff, or is the chemo a more generic thing?

Click to expand...

Yea, targeted specifically at the BRAF V600E mutation in the tumor cells.

...of the tumors.

Yep! CT scan confirmed that the jawbone is regrowing! Targeted chemo is working!

Nobody has any idea how long we should keep going, but for now - we're keeping going!

Next CT scan is this upcoming Friday, so I may have more of an update after that.

It looks like I failed to mention that I found if I stay on the targeted chemo pills too long, my thermoregulation goes to hell - but skipping one dose gets me back on track. The first time it happened, I had no idea WTF was going on and spent at least a day in bed alternating between feeling overheated and shivering til my temperature reached 105F. Thank goodness The Melanie figured it out after going back and reading the insert again.

No real update, scan looked fine - but not enough change for the radiologist to declare further shrinkage (same as before, it was 2 scans in before they declared shrinkage).

Oh, and my oncologist is leaving to head up/build a new clinic in Florida. Not worried about it, there are plenty of great oncologists at MDA.