Thread: Update on me
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Old 01-18-2008, 05:31 PM   #1
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Talking Update on me

Thanks to everyone who has been waiting along with me for results, answers and such. I feel like all my sisters (and some brothers) have been holding my hand through all this scanxiety.

Despite all that, I was pretty much a basket case earlier in the week. No communication, no news on the scan...so of course in my twisted mind that MUST have meant the results of the scan were getting worse and worse by the minute, like the portrait of Dorian Gray. Call it temporary inscanity.

Actually, the reason I had no word was because they still did/do not have final results. When I saw the doctor, we all (me, the doctor, NP, and trial coordinator) looked at the report together and it made no sense to any of us. Things were not measured that were there before. It wasn't clear how many lesions there were, or where they were. Parts of the scan were misregistered because I had breathed during the 20 minute PET scan. I'll try not to let that happen again.

Anyway, the conclusion of all that was that there's pretty good consensus that there is progression, even if the details are a bit sketchy. However, it was definitely not as extensive as it had become in my scanxiety-ridden mind. Enough to require a change of course, tho.

On the positive side, my liver is very healthy with all lab enzymes very comfortably back in the normal range. My labs on January 2 showed elevated AST and bilirubin at the upper limit of normal. So it must have been all the pizza and mulled wine over the holidays.

The new plan is a change of plans...not any of the things I had expected! It looks like I will continue my lab-rat status in a new trial, the trastuzumab MCC-DM1 study. I heard an update on it at San Antonio and was disappointed to see it was not available anywhere in California...only it WILL be opening at UCSF in a week or so! Of course I have to get more scans before I start:O

While I'm on the trial, I will also be consulting with the RFA/Surgical team to see if I qualify for ablation of the liver lesions, should any remain after the next attack.

Dr. Rugo seems very excited about this drug - a supercharged Herceptin with a nasty toxin tagged onto it. She called it a "smart bomb". That's why Tiptoe is so excited - more good uses for Herceptin!

So I'm hopeful it will blast the crap out of those nasty cancer cells. Sorry to sound so violent but it's an acceptable image in that context, don't you think?

Anyway, on we go...hanging on to the next hope!

Thank you all again for supporting me so much and wrapping me in your love.
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure

Last edited by chrisy; 01-18-2008 at 05:35 PM..
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