The Stacey Report

So I’m a little behind on the blog… So here’s an extremely long update!

Posted in Stacey Updates by dbancroft on
Well, hi there! It’s been a while, and we’ve got a lot to catch up on! I thought we might as well do this as a Q&A with the subject matter expert herself.
I sent Stacey a list of questions:
  • Dude.
  • I’m a little behind on the blog. The last thing we posted was your threatening letter to the health insurance co about sending your meds. What was the name of that one, and was that a trial or a regular treatment?
  • So you went on that one, and I seem to recall that you didn’t lose your hair, but there were other side effects, what were they?
  • I see. Disgusting. And that was working well for quite a while right? how long, and what did they find over that time –
  • I remember that after one scan there were new tumors, but very small, and the original ones had shrunk… but that was still considered a lame-ass result and they switched you to the one you’re on now? or did i skip one?
  • And what else did I miss?
  • OK! So what are you taking now and in what ways does it suck?
  • And what other treatments are you doing?
  • And how is all that going?
  • And they just did a scan, correct? What kind, and what were they looking for?
  • And the results will be in when?
  • Anything else you’d like to tell us?
  • OK! That’s the scoop from Stacey.
Here are her answers:
Dude.
Dude.
I’m a little behind on the blog…
A little?!
The last thing we posted was your threatening letter to the health insurance co about sending your meds. What was the name of that one, and was that a trial or a regular treatment?
Tykerb, it’s a regular treatment, but a relatively new one.
So you went on that one, and I seem to recall that you didn’t lose your hair, but there were other side effects,what were they?
Not much of anything. I wasn’t on it for very long before we realized that it wasn’t working.
I see. Disgusting. And that was working well for quite a while right? How long, and what did they find over that time?
What the hell are you talking about?
I remember that after one scan there were new tumors, but very small, and the original ones had shrunk… but that was still considered a lame-ass result and they switched you to the one you’re on now? or did i skip one?
No, I think you’re right.
And what else did I miss?
MY BIRTHDAY! No, just kidding. You haven’t missed it…yet.
OK! So what are you taking now and in what ways does it suck?
I’m on a trial med called XL147. It’s supposed to resensitize you to Herceptin and Taxol. I’ve been getting Herceptin for the past 5 years and I got Taxol during the first line treatment waaaay back in 2006. Taxol makes your hair fall out, so I’m currently bald, which sucks. Also, it turns out that long-term Taxol use can cause peripheral edema (swelling in your arms/hands and legs/feet). Edema is very uncomfortable. It’s treated with Lasix, which makes you pee all the time. Imagine having to hie your swollen, puffy body to the bathroom every 45 minutes or so. Sounds like a ton of fun, huh?!
And what other treatments are you doing?
Just the XL147, Herceptin, Taxol, Zometa, Lasix, Hydrochlorothiazide, Metroprolol, Losartan, and Potassium supplements. Isn’t that enough?!
And how is all that going?
From the beginning of the trial the size of the measurable lesions in the liver decreased by 33%. That’s enough to get everyone excited, but is still only considered Stable Disease. Over 50% is considered a Partial Response, and, naturally, 100% is considered a Complete Response. With Metastatic Disease, you’re happy with Stable Disease and the goal is to keep it stable for as long as possible. Since the first few scans the measurements have started getting slightly larger each time, but not yet enough to wipe out the progress made and not enough to move out of the Stable Disease column.
And they just did a scan, correct? What kind, and what were they looking for?
The scan was done Monday. On the trial they do them every 6 weeks. They track the size of the 3 largest lesions and compare them to the previous scans.
And the results will be in when?
Tomorrow. If they’re still stable then I’ll be on the trial for another 6 weeks. If the lesions have increased by more than 20% then I’ll be off the trial and on toanother med.
Anything else you’d like to tell us?
Edema sucks. It is VERY different from just being fat. Plus, my feet hurt. On the positive side, I got a new car a few weeks ago!
OK! That’s the scoop from Stacey.
Dude. You’re really weird.
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