There They Go Again!

As you know, when I froze my head with the Penguin Cold Caps to save my hair during chemo, I had the great fortune to not only meet but also to build a marvelous relationship with the amazing folks at Kenra (makers of fabulous hair products).  Over the past couple of years, Kenra has partnered with the Rapunzel Project to raise funds to help cancer patients save their hair during chemotherapy.

As if that effort wasn't enough - Kenra decided to take it to the streets.  Tomorrow, Kenra representatives Amber and Rebecca will begin their 3-day Susan G. Komen walk in Tampa to raise money for breast cancer research and community programs.

These phenomenal women wrote me recently to let me know that they decided to name their team "Team Eve."  I am so very honored that I'm able to be there in spirit as part of their effort to raise funds to fight this disease.  Although I couldn't imagine taking a 3-day walk, I can help their efforts by urging you to support Team Eve.  To give, go to:http://bit.ly/TdxGD8 and just click on one of their names.

What a great way to celebrate Breast Cancer Awareness Month!  Hopefully, through efforts such as these, we will soon be celebrating Breast Cancer Eradication Month!

The First Day of the Rest of My Life

The day finally arrived.   We were going to begin the experimental treatment that promised long-term remission.  On Thursday, my mom (in town for a visit) and I headed down to Stanford to embark on this new journey.  

We arrived at 9:45 am at the Stanford Clinical Trials Building, eager to begin.  After checking in and hugging everyone, they sat me down for the first step – the blood draw.  My fabulous nurse, Cindy, started pulling out vial after vial for my blood.  (Big apologies for those of you who are squeamish about these things.)  She turned to me and said “wow – I rarely see a study that asks for this many vials.  The nurses were concerned about my blood pressure, but chalked it up to nervousness.

Rebecca (the trial coordinator for Dr. Kohrt) then walked me over to the Cancer Center to meet with my new BFF Dr. Kohrt, so that he could answer any last questions and get final sign-off to start.   I was initially most interested in finding out what they saw in the CT scans.   How many tumors were still in me?  Did they grow? Were there new tumors? The good news and the bad news is that I still had the same 5 tumors from June.  They had grown a little, but there were no new tumors.  This meant that the chemo that I was on had been able to keep my tumors in check.  But, of course, it also meant that the dosage that I was on was not able to kill them.   He was pleased that the tumors were still small, yet I had enough for Genentech to let me participate in the study. 

I then asked him the biggest question of all - “what have been the results for others thus far?”  His answer – “the results have been dramatic.”  Dramatic?  Did he actually use that word?  I repeated it back to him, just to make sure that I had heard him correctly.  That's about the best word that anyone who is undergoing any treatment would want to hear.

Alas, my blood pressure continued to be too high for anyone to feel comfortable giving me an infusion.  Several hours of continual testing did nothing but raise my stress. I was getting desperate, because this meant I would have to come back to start treatment another day.

They then came up with a new solution to try to drop my blood pressure – they placed a double dosage of Ativan under my tongue and Dr. Kohrt convinced Genentech to let me go forward with the infusion. The day had been quite an ordeal, but by the time Stanford closed for the evening, I had received my first infusion.  Success!

And how am I feeling now?  FANTASTIC!  It has been nearly a month since I took my last chemo pill.  I can feel my hands, feet and brain returning to normal.  It’s a wonderful feeling not having poison coursing through my body.  There are no side effects to my PDL-1 treatment.  Let me repeat that….THERE ARE NO SIDE EFFECTS. 

In about 6 weeks we should know if the PDL-1 drug is working for me.  I have every confidence that the tests will show that it is.   I feel like I’m getting my life back.  It has been such a long road.  It’s been nearly 5 years since I was first diagnosed.  I have learned so much and I believe that I am a better person for having gone through this journey.  But I am ready to be done with cancer.  I am ready to reclaim my health and my life.

And Off We Go!

I’m thrilled to let you know that they found enough tumor growth in my scans to move forward with the study.  How bizarre is it that I’m happy having tumor growth.  I don’t know how much or where the tumor(s) are, since we have been texting back and forth, but I’m sure that I’ll find out on Thursday.

Why Thursday?  Because THAT IS THE DAY THAT I START THE STUDY!!!  Yes - it's finally happening.  After almost 5 months, multiple tests and a lot of back and forth between Stanford and Genentech, we're on our way.

So - in just a a day or so - I'll be meeting the team at 10 am for lab work and then will head over to meet with the amazing Dr. Kohrt to start the drip.  Thursday's appointment will last about 4 hours, but they expect that going forward, they'll be able to shorten the infusion time.

I am so ready to begin this new journey.  I truly believe that I am pioneer in this new world of immunotherapy.  My prayer is that this study will result in thousands of lives being prolonged or even saved (including mine).

Let the adventure begin!