Well, it was quite a day...

[chrisy]

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…

[StephN]

Glad things all worked out in the end. Having the right orders in the first place makes a huge difference in how the infusion day goes!

Is the Avastin weekly?? The answer may be in one of your other posts, but was wondering as you have that commute to contend with. I can imagine your blood pressure reading was a little out of whack by the time you got to sit down and someone could check it!!

All best wishes that this combo will put your mets behind you without cutting too much into the rest of your life.

[rinaina]

Wow, what a day. I sure hope this new regiment does the trick and that you feel well during it.

[Lolly]

Chris, you make it sound like fun! What a day, and first nurse didn't make things any easier but we're all human. #2 more than made up for #1, and you left with a good feeling so hoping the subsequent visits are all way cool!
Avastin is an exciting option, and thank you for helping the research along.

<3 Lolly

[Sheila]

Chrisy

WOW, was a cozmo in order after all that? We get so used to our usual routine, that it makes it hard when we are sent to what seems to be an impersonal chemo center....looks to me it is up to Chrisy to show them what we expect! There is NO excuse for crabby, impersonal nurses! Hope the rest of your day was peaceful and relaxing, and especially hoping this is magic for you! So glad the calcium levels were good.
Reading your post is what we love about you Chrisy, you made an absolutely horrible day seem funny and tolerable.....I was glued to the edge of my seat waiting to see what happened next...you should write stories, I'd be your biggest fan!

[Mary Jo]

Wow, I'm out of breath and dizzy from only reading about your day. I can only imagine how you must have felt. LOL! Oh well, the important this is you are started. Only good things to come, I pray.

Loving you "sister"

Mary Jo

[IRENE FROM TAMPA]

Wow Chrisy what a day you must have had along with the anticipation of starting a new drug. I am glad that your day ended up on a more positive note about the center. I think its good to be comfortable in a place where you are going to spend so much time at, and as time passes you will become more comfortable there. Unfortunately some nurses are great at what they do and some are not.

Let me know how you feel on the Avastin. That is the next drug that I am researching for myself in the event the Tykerb/Xeloda starts to fail on me.

I wish you all the best with this chemo and keep up that wonderful spirit. We SHALL overcome .

[Carolyns]

Hi Chrisy,

Wow, what a day. I would sleep for a week after that. I hope that the treatment works wonders for you. Thanks for sharing. You remain in my prayers.

Love, Peace, and Hope,

Carolyns