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…

The "trials" of a trial ...
 

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.

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

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

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!

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

Wow. You are getting really aggressive treatment. A woman in my support group is stage IV with bone mets. Not Her2 positive. SHe's on avastin. Her lesions are "healing." Imagine that. I guess all the cancer died and now the inflamed areas are healing. I look forward to hearing how your liver mets have dried up and disappeared. I had my chemo in a giant room that looked to me like the waiting room in Penn Station, New York. The only difference was the row after row of recliners instead of hard plastic chairs. Now the cancer center plans to triple the size of the infusion area - but they are getting designers in to make it friendlier. I don't ever plan to use it, but I'm glad for future patients. I hated the place for a while. I didn't like seeing nurses rush around like waitresses. But I adjusted and now feel friendly toward the place. It's where we get healed! Ah nurses. Many are so very good, but a few.... I remember the new nurse who couldn't get my vein after two tries and a tear rolled down her cheek. I felt I should comfort her, but reminded myself that I was the patient.

Sorry you had such a bad experience at first, but I am glad it got better at the end. I am hoping and praying that you are doing well and that the treatment will be successful!

Chrisy,

Wow - what a story - thanks for sharing your day!
How often will you be going to this caner center?
I am just certain that you will have nurse #1 understand
in short time how to behave....

I am sending you all good wishes for great treatment results!
You shall and will have that.

Hugs,
jean

Yup, all just a learning experience!
 

Thanks for reading my saga!

StephN and Jean - the Avastin is every 2 weeks, I'll be experimenting with travel routes as well as "other activities" to enjoy in the city, not that infusions aren't fun...My real goal is to find a place where I can park for free. And lesson definitely learned about making sure the orders are "in order"!

MJo - thanks for sharing your friends success with Avastin - now that's what I want to hear! One highlight for me Tuesday was reading the fact sheet they gave me, especially the "how this drug works" section which was only one sentence ending with "...cancer cells causing them to DIE" (emphasis mine). As for the infusion center, having the little pods does make it less Penn-Station like. The other nice thing is they are along the walls so have great views over San Francisco and little planter boxes outside the windows.

Sheila - absolutely! When I was waiting for the final lab re-do, cool chemo nurse asked me if I wanted some tea, water and when that got no response, "how bout a nice strong cocktail!"

Hugs to all
Chris

good information
 

Phew! What a day! I'm glad you shared. I'm also glad you had your hubby there to encourage you. At least San Francisco is a beautiful vista. You could be in Gary, Indiana.

I really think and feel that this combination is exciting and I'm just going to think that the hassles will be worth it. I'm also sure that you will figure out the best way around all the glitches and changes from you are used to.

I know I would feel like a hick in a place like that, although I see it in my future. My center is so friendly and I always have a chair and it is roomy AND they are building a whole new center that has been designed by nurses with a lot of patient feedback as well. I always feel like I'm with 'my people' when I'm there.

Anyway, the point is...oh yeah...that you have begun an exciting treatment in a fairly short period of time and you will conquer all the dumb stuff around the treatment with your sense of humor and brains.

Let us know how you are feeling, no matter what it is, cause we will be here for you!

Joy
 

Thanks Joy, yes that was exactly it - I felt like I was no longer with my "peeps"! But I'm sure that will change. The UCSF cancer center also has a nice meditation room and lots of other good support stuff, so I'm sure it will be jus' wonderful!

And of course, NEVER lose sight of why we're going to these places at all! So that we can be healed by both science and the loving care of those who are serving it up.

One interesting thing, I am the 6th person in this trial at UCSF. Of 6. (although they're trying to get approval for more) So I take that as a sign that this is where I'm supposed to be!

Chrisy,

WOW! What a day! Hopefully the rest of your treatments will be much more streamlined and you'll actually get to do something fun after your infusion. Praying that the Avastin works for you.

We can all relate...
 

Great post, Chrisy! I agree. You should be a writer.

Chrisy
 

I Don't Know Where Scott's Valley Is But Could You Call The American Cancer Society And See If There Is Some Nice Retired Person With Time On Their Hands To Drive You, Even Part Way

Eg, If They Live Between You And Ucsf, You Drive Up To Their Place And They Drive You The Rest Of The Way (saves You The Trouble Of Parking And The Nerve Racking Commute Into The City)

They Could Spend The Time Shopping, Dining Etc And Pick You Up And Take You Back To Your Car.

Perhaps A Couple Of Such People Could Trade-off So Noone Is Stuck "having To Shop Or Eat In San Francisco--a Terrible Fate--too Often"

Chrisy - thanks for the log book. What a story! I have been so connected to my infusion clinic and staff for the last 3 years that I can't even imagine having some strangers working on me. YIKES!

I will be going for a work-up at MD Anderson in a couple of weeks and I have heard all about how impersonal it can be. It will be weird, that's for sure. I am "on the guest list" as I like to say - at my home clinic, and there is nothing impersonal about the place. It's one big, positive, optimistic family. Heck, I even go to breakfast on weekends with the coordinating infusion nurse who runs the desk. She has become one of our dear friends... and my onc and I have threatened to go bowling together with our families. He brings his kids to my hair salon for haircuts and I know his wife. Also, he is the same age as my older brother (who passed away 5 yrs ago), and in conversation about 6 months ago we realized that we lived in N. Little Rock at the same time in the early 60's, two streets away from each other, and he went to elementary school with my brother. So, it will be really weird for strangers to work on me.

Life and times in an Infusion room....
 

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 .

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