Wednes"BAY" Week 3... On a "Toxic Tuesday"

I just wrapped up my 3rd week on Bay 80-6946.  Because of the holidays my infusion was moved up to Tuesday (I know, just like old times), in order to have routine lab work the day after the infusion.  I'm not required to have lab work the day after every infusion, but it is required on the 3rd week of this clinical trial.  The 3rd week also requires another 12 hour long day on infusion day.  The infusion itself is only about an hour to an hour and a half, however I'm suppose to hang around  the rest of the day while being monitored... vital signs are periodically checked and Pharmacokinetic Samples, or PKs are taken.  Talk about a long da... Oh, did I lose ya with the big word???  If so, no worries!  Let me explain...

Pharmacokinetic Samples or PKs are blood and/or urine samples that are collected before, during and after my treatments. These samples can tell us how high the level of the drug gets in my body, how long the drug stays in my body and how my body gets rid of the drug.

Now you're up to speed with whats going on AND you learned a little something.  But before I sign off and wish everyone a Happy Thanksgiving, I have a few shout outs to make in the spirit of Thanksgiving...

Thanks to the American Cancer Society for hooking us up with free lodging for the night.  Ooooh, how that helps us out!

Thanks to the gentleman blaring Christmas music for 12 hours straight in the infusion room.  I think I can make it till Christmas 2012 without hearing another Christmas song (insert sarcasm)!

And thanks to the great Chemo nurses in the infusion room. One in particular nurse stands out... But maybe that's because she helped me get through the last couple of hours of Christmas music. She was the night nurse who wore cowboy boots, called me mija and kept a stack of prayer cards in her pocket.  Thanks Maria!

Happy Turkey Day Y'all!

Wednes"BAY"

It would have been exciting if the results from my PET scan came back showing improvement, but instead they came back showing something equally exciting… “STABLE.”  It’s a word I never thought I’d appreciate as much as I do now.  I’ve had a lot of curve balls thrown at me this year after being diagnosed so I actually welcome the thought of being "stable."  Stable is not a bad thing.  I've learned it could be worse.  Ultimately in the long run, we're going to kick some cancer ass, but for now, I'll take "stable!"  But since I mentioned curve balls being thrown at me, let’s take a few moments to review some of them…

Not only do I have breast cancer, BUT it’s spread to my liver (Doh!)

It’s rare to have an infected port, BUT mine got infected (Doh!)

Bone metastasis?!?  (Doh!)

Liver biopsy drama... (Doh!)

So yes, “STABLE” is not a bad thing!  Besides, did we really expect improvement after 2 days from the 1^st infusion?!?  After talking to Dr. Patnaik she said the “possibility” was there, but she’s really expecting improvement over time.  So this week I finished up my 2^nd dose.  Again, I’ll have an infusion every week for 3 weeks, then I’m off a week.  That’s considered 1 cycle.  After the 2^nd cycle, which will be the last week in December, I’ll retake a lot of the scans and images to see where we are at.  Hopefully by then we’ll start to see some improvement!

As for my blood sugar levels, I mentioned that one of the main side effects of this drug is high blood sugar, or hyperglycemia.  Sure enough, after my 2^nd infusion, my blood sugar levels increased.  Thankfully this time they didn’t increase quite as much as last week… we’re thinking my no sugar, low carb diet on infusion day this week might have helped.  So anyway, with the Drs suggestion, we bought a glucometer to help monitor my blood sugar levels on infusion days and the day after.  Other than that, I'm doing great!  

Casey's Cancer Kickin' Krewe 2011

I can’t even begin to describe what an amazing weekend I just had.  Have you ever participated in a Komen race???  If not, YOU SHOULD!!  Over 17,000 people poured through the streets of Austin.  It’s a memory that I’ll cherish forever!  I’m truly blessed to have family and friends who are… well, who are not just supportive, but A-W-E-S-O-M-E!!  Since being diagnosed, family and friends have struggled with not knowing how to show their support.  This race was a great opportunity for everyone to come together, show their support and have some fun.  And boy did we have some fun!!  And if you’ve never worn a pink wig in your life… YOU SHOULD!!  I’m already looking forward to the next time I get to wear it!  Hey, I live in Austin!  It’s a guarantee that I wouldn’t be the “weirdest” person in the crowd!  Ha ha!  Anyway, thanks to everyone who came out on race day… even if I didn’t get a chance to see you.  With over 17,000 people, you could say it was a bit crowded downtown!  ;)

So yes, it would be an understatement to say that “Casey’s Cancer Kickin’ Krewe” was a success!  We reached our goal and then some.  Thank you to everyone who participated and/or donated.  We raised $14,340.  If that’s not incredible enough, on 11/10/11, our anonymous donor matched the total amount raised in Memory of Natalie Hogan.  I know… breathtaking and inspiring!  My heart is smiling right now!  After a few more donations that trickled in, our grand total is up to $28,830.  UNBELIEVABLE!!  I have to thank our team captain for such an amazing job... Thanks Elizabeth!  I love ya girl!

Alright, my next infusion is this Wednes”BAY!”  Come on… I couldn’t stop at “Toxic Tuesdays” and “Manic Mondays!”  So along w/ my infusion I’ll meet w/ Dr. Patnaik to discuss the results of my PET scan last week.  I’m SO excited, yet SO anxious!  I don’t want to get my hopes up, but the “possibility” that we could see results after the first infusion is an incredible thought! 

Woohoo!

The Krewe's Team Captain

SURVIVORS

Winner of "Farthest Traveled" & "Surprise Visit"

Great seeing you Brian!!

Thanks Contigo!  Fun after party!!

Casey's Cancer Kickin' Krewe - Race Day Information

The Race is this Sunday...


*Krewe Photo: 
Meet at 15th and Congress on the Capitol side at 7 a.m... don't be late!  I know, I know it's early, but it should be easier to fight traffic and park and I really, really want a team picture!  The timed race starts at 7:30.  For the rest of us, we'll mosey to the starting line for opening ceremonies at 7:45.  Feel free to walk or run in the race of your choice.  I will be participating in the 1 mile family walk...and yes, I'll be walking!  You didn't think I was running did you?!?  If you're a true follower of this blog, you would know that one of my many nicknames is Grover... and I won't be walking FAR!!


*Race Attire: 
Wear your Krewe shirt to let everyone know you're part of our awesome team!  Then add some flair to show off how fun we are!!!  We'll have beads for you to wear and throw (no inappropriateness tho!).  So add a fun hat, wear a tutu, pick up some fun sunglasses, use your imagination and go WILD!


*After Race Party: 
Join everyone to celebrate a successful race at Contigo (10:30 - 2:30),
2027 Anchor Lane, Austin, 78723
http://contigotexas.com/location
It's a great place with tasty food and cold drinks. 


Be sure to check out Komen Austin for more details... race map, parking, road closures, etc.


FUN!!  Looking forward to Sunday!!  ;)

TDM1... I mean BAY 80-6946 Day 1

We started out the day by leaving Austin at 5:45 am.  We arrived at the START clinic this morning at 7:45 am... it's 9:00 pm and we're still here.  The infusion lasted about an hour, but I'm being kept here till 10:30/11 pm to be closely monitored.  One of the side effects I was warned about when joining this clinical trial was high blood sugar levels.  Sure enough, my blood sugar levels increased so I've been given a couple of insulin shots.   Since then the levels have begun decreasing so we're hoping to get out of here in the next hour or two.  It's been a loooooong day!  Tomorrow I'll have more lab work and a bone scan.  On Friday I'll have even more lab work and a PET scan.

I'm feeling great and looking forward to the possibility that we'll see results in Friday's PET scan.   We probably won't get the results till next week, but I'll be sure to keep you posted.  As for the master plan, I'll be getting weekly infusions in San Antonio for 3 weeks and then I'll take the 4th week off (no infusion, but I'll of course have lab work done).   That's considered 1 cycle and I guess we'll just repeat the cycle as necessary.

Again, it's been a loooooong day so I'm signing off.  Hope everyone is having a great week so far!  And yes, I hope that means you're resting up before for the big race this Sunday!!

Saaaaaaay Whaaaaaaaaat?!?

I just wrapped up all the initial lab work, scans, images, tests and paperwork for the clinical trial down in San Antonio.  Jason is recovering from bronchitis so my mother in law, Marion, swooped in and saved the day.  I can't thank her enough for going with me and sitting through the lineup of... well, just about every medical test known to man.  That and we had a hell of a great time!  

At this time I would like to clarify one small, itsy bitsy detail... as I was about to sign the consent form, my attorney and I reviewed the consent one last time (yes, having a mother in law who is an attorney is quite convenient... of course being able to say "my attorney" just makes me sound so much more important).  The consent reads: "An open label Phase 1 dose (hmmmm, I thought HDM1 was in phase 2) escalation study to evaluate the safety, tolerability, pharmacokinetics, maximum tolerated dose and biomarker response after intravenous administration of weekly "BAY 80-6946" (Saaaaaaay Whaaaaaaaat?!?) to patients with advanced cancer."  Whoa, whoa, whoa... BAY What?!?  What happened to the Trojan Horse, miracle drug TDM1???  Well, APPARENTLY TDM1 had been mentioned in a Drs appt and we took the name and ran with it.  That is in fact NOT the trial I will partake in.  So this whole time I've been excited about the wrong drug... GREAT!!  But the good news is this "BAY 80-6946" (okay, they really need a new name for this bad boy) does all the great things that I was excited about... targets the cells, has minimal side effects and lets not forget the most exciting thing, the frequent scans and images that comes along w/ the trial.  So after discussing this new drug with my attorney, I signed the consent forms.  Oh ya, we're doing this!  So next week I'll have my first infusion on Wednesday, the 9th.  My next PET scan will be 2 days later on Friday.  There is a strong possibility that after only 2 days we'll see improvement.  How crazy is that?!?  I'm so excited about this trial and can't wait to see what happens.  So yes, I'm excited about this "miracle drug"... it's just another miracle drug I'm excited about!