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Old 04-25-2007, 09:26 PM   #1
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Wink Well, it was quite a day...

but I’ve officially started the Tykerb/Avastin trial! Long post because it was a long day...


8am – leave for UCSF (usually a 90 min drive)

9am – have traveled 25 of the 70 miles! Note to self – take alternate route during rush hour!

10am – arrive UCSF (lady leadfoot in a mustang!)

10:01 – hit the restroom

10:05 – trial coordinator takes me to lab to give 5 vials of blood and ante up a urine sample. OOPS! Leave the lab with an empty cup in a Ziploc bag – homework already!

10:45 – get EKG – 30 minutes waiting around, 8 second scan

10:47 – get exam and see doctor – since I had seen her only a week ago, she just basically said “you’ll do fine”, handed me orders and left.

10:52 – after realizing nobody was going to escort us (gee, I was getting used to the VIP treatment!), decided to go find the infusion center on our own

From there the timeline is a bit of a blur. I think they deliberately don’t have clocks in infusion rooms, just like in Las Vegas! But you ladies all know the drill – wait for a chair, get a chair, wait for an IV hookup, blah blah blah.
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Overall, the infusion center was a bit of a traumatic experience for me. I’m accustomed to my local onc’s office, where everyone is all together and within shouting distance, and you really can see what’s happening. UCSF is a big city place! I’m sure I’ll feel better about it as I go, but it seemed real impersonal to me – it was a little like the BORG, with 5 or 6 “pods” of 5 chairs. I felt like I was “2 of 5” instead of Chris. For those of you non Star Trek fans, my apologies!

I was a little annoyed by the first chemo nurse, who after declaring I had no veins set up the IV in a really goofy place – while proclaiming that I had gotten “too much Herceptin” – you should only get a year. DUH – I was actually hoping for more like 10 years!

Then after sitting there for about 45 minutes with teeny dribble coming through the IV, we’re thinking wow – this is gonna be a 3 hour infusion, not 90 minutes! Turns out, the doctor had not put the dose on the orders and I was only hooked up to a saline drip! Because the doctor is on another floor, and of course very busy, it took about an hour to get the actual medication set up! In the meantime, the chemo nurse had gone home (without saying goodbye)! Eventually another nurse was assigned, and she was actually VERY cool. Liked her a lot. Not just because she gave me my goodies.

Finally it’s 4:15 and the Avastin is done. Boy was I ready to get out of there! Then “nice” chemo nurse comes in and says Oh I hate to tell you this, but your calcium level was a little high and we have to do another blood draw and more labs. Hubby assumes its because of bone damage from cancer – which nurse acknowledges was possible. Or I could have just been dehydrated.

During this 45 minute wait, I really started to meltdown. I actually had thoughts like “what’s the point – maybe I should just go ahead and die right now and save all the hassle". Good thing hubby was there to comfort me. Next minute, nice nurse bounces back in and says “You’re NORMAL”. I told her nobody had ever accused me of THAT before!

5:00 pm – we flee UCSF. Just in time for rush hour. On the way out, we hit the restroom. I notice the LIVE PERSON playing a baby grand piano in the lobby. Nice soothing music. On the way out the door, I notice the little zen-pool with zen rocks. Very nice and soothing.
Maybe this joint isn’t so bad after all…
__________________
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
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