Saturday, June 8, 2013

Lasers, Tattoos, and Dirty Girls....



The votes are in, the experts have spoken, and we have definitive proof that there is an area in my left hip that has become resistant to my current meds.  My latest scans show that there is a new lesion growing between my femoral head and my hip socket. 

My doctor and I discussed treatment options and she suggested treating this small area with radiation while continuing to treat everything else hormonally. Our goal is to delay chemo for as long as possible and it sounds like radiation will help achieve that.  One of the things they are learning about breast cancer is that resistance that develops in one area can spread to another area (instead of each area developing their own separate resistance mechanism).  Because we truly are "trailblazing," my doctor wanted to discuss my case with the Oncology team before proceeding

As He has so often done during this journey, God placed the right people in the right place at the right time.  The same day that my doctor was presenting my case, Dr. Larry Norton, an international breast expert from Memorial Sloan Kettering (and truly one of the best minds in the field) came to Penn State Hershey to present some of the latest unpublished data. My doctor seized the opportunity to get his thoughts on my situation.  He completely agreed with my doctor's plan to keep me on my current treatment and radiate the area that may be becoming resistant.  In fact, Dr.  Norton has had excellent results with this approach with his own patients.

It seemed like a no-brainer to me, so I scheduled an appointment with Dr. Wagner, the radiation oncologist, to start the process.  Some of you may remember my post from March 2010 describing my first experience with radiation, Sylvester Stallone, and my visualization techniques.  As soon as I met Dr. Wagner, I immediately felt at ease and had the urge to make those tiny little laser noises again.  I refrained from the noises for now - after all, what kind of first impression would that leave him with?  

I returned to Hershey the next day for some special measurements and to have the infamous blue dot tattoos placed on my hip area.   The tattoos are necessary to ensure the lasers are aligned correctly for every treatment.  Not exactly what I had in mind for my next tattoo, but I guess it will have to do for now.

I will have a total of 10 treatments - once a day two weeks.  This should be a piece of cake compared to the 30 treatments I had three years ago.  (geez, has it really been that long?)  Dr. Wagner wants to start right away and I say "bring it on!"   I will have my first treatment bright and early Monday morning and my last one will be Friday, June 21.  

Here's how the rest of my conversation went with Dr.  Wagner that day.....



Me:    "I am registered for a 5k mud run on June 22."

Doc:  "Are you asking me or telling me."

Me:   "ummmmm.... asking?"

Doc:  "if you're asking, my answer is no"

Me:   "Would it make any difference if I said the proceeds go towards breast cancer research?"

Doc:  "While that's a noble cause, my answer is still no."




Dr.  Wagner explained that I could still walk the course, but shouldn't try to complete the obstacles. The lesion in my hip socket has weakened the joint enough that I have an increased risk of a hip fracture.  Also keep in mind that estrogen in women protects the bones.  I have been undergoing therapy that eliminates estrogen for the past four years so bone density is already a concern.

...and that means no muddy cargo net climbs for this Dirty Girl!

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Dirty Girl is a 5k adventure run for women that was founded in 2010.  The obstacle course consists of wall climbs, stomach crawls, cargo net climbs, tire tests, and concludes with a mud filled pit.  Dirty Girl believes in finding a cure, educating women, and helping those who are currently dealing with Breast Cancer. After all, the Dirty Girl way is to jump in, get dirty, and fight!

Dirty Girl supports breast cancer charity organizations in each events market. By participating in a Dirty Girl Mud Run you’ve already have made a difference by financially and physically making a stand against Breast Cancer.  Go to their website Go Dirty Girl for more information. 








Thursday, June 6, 2013

Trailblazing (...and a little bit of history)

After an entire year of being "cancer-free," the roller coaster started up again in January when a routine scan showed very early signs that my Meds were no longer keeping my cancer in check.

The primary Med that I have been on is called Afinitor and is the "latest and greatest" for treating metastatic breast cancer. Afinitor is one of the first treatments that targets mTOR, a protein that acts as a regulator of tumor cell division, blood vessel growth and cell metabolism.  Gabriel Hortobagyi, MD, Chair of Breast Medical Oncology, University of Texas MD Anderson Cancer Center said "This approval redefines the treatment and management of advanced hormone receptor-positive breast cancer, offering a critical new option for physicians and patients."

I'll try to explain how Afinitor works in non-medical language...  About 75% of all breast cancers (mine included) grow in response to the hormone estrogen.  Eliminate estrogen and the cancer cells essentially starve to death. There are various hormone therapies that can accomplish this and I had worked my way through all of them.   Over time, my cancer cells mutated and were no longer sensitive to estrogen which meant hormone therapy was not working.  At that point, my only "FDA approved" option was traditional chemotherapy.   ...not an option that I was particularly excited about.  Afinitor was being used for kidney cancer, but wasn't approved for breast cancer yet.  Afinitor essentially re-establishes sensitivity to estrogen, thus allowing hormonal therapies to work again.  B-I-N-G-O!  That's exactly what I needed!  

I started on Afinitor in January 2012 to keep the cancer cells sensitive to estrogen along with a second medication that eliminates the estrogen in my body.   This particular combination of Meds was part of a clinical trial that was very successful in keeping me cancer-free for a year!!  The FDA approved it for breast cancer 8 months after I started taking it. (Ask me about that crazy story sometime!)

I had just gotten used to being cancer-free when my routine scan in January showed some very slight changes that turned out to be early indicators that the combination of Afinitor and the second medication was no longer working.  Here's the tricky part.... How do we know which med had stopped working?  Was it the Afinitor which is the newest drug on the market, or the second run-of-the-mill traditional medication?   This treatment is so new that there really aren't any established protocols to follow yet. 

When I asked my doctor what we do next, she looked me straight in the eye and said "trailblaze."  That one word reinforced my trust in her and my admiration for her dedication to my health.  
 
Trailblaze... that's exactly what I intend to do!!!



This isn't our Jeep, but I just love the organization it belongs to. We discovered "Topless For TATAs" at a Jeep show last summer.  Topless For TATAs is a charity that brings together off roaders for a day of wheeling and breast cancer awareness. It started in 2009 with a goal to raise awareness for Breast Cancer while enjoying a safe day of offroading. The proceeds raised at this year's event will be donated to Breast Cancer Research Foundation. BCRF’s mission is to achieve prevention and a cure for breast cancer in our lifetime (yes, please) by providing critical funding for innovative clinical and translational research at leading medical centers worldwide. Currently, over 90 cents of every dollar donated goes to research and awareness programs.

“Don’t go where the path may lead,
go instead where there is no path…and leave a trail” 
-Ralph Waldo Emerson

Monday, July 16, 2012

The night before...

The night before a scan is always unusually stressful for me. It's easy to say "oh just have faith," but that is totally impossible for me to do on my own. Thanking God for sending just the right amount of His peace and strength to carry me through.

“Faith isn’t the ability to believe long and far into the misty future. It’s simply taking God at His Word and taking the next step.” -Joni Erickson Tada

Tuesday, May 22, 2012

Heartfelt Thanks

On my family’s behalf and mine I would like to express our heartfelt thanks. We continue to be humbled by the outpouring of support from friends, family, and even strangers through the You Caring Fundraiser

Our lives have been turned upside down, but I am continually amazed by the way God has been working in our lives.  He has been faithful and continues to show us that absolutely ANYTHING is possible with Him!

I was in my kitchen two weeks ago, looking at an empty container of medication, preparing myself for the trip to the pharmacy to refill the prescription. Out of the blue, I was notified that someone had returned a week's supply and that I was welcome to have it if I wanted.  If that's not God's way of revealing himself to me, I don't know what is!

The blessings continued into last week.  I was able to negotiate with the pharmacy to dispense two weeks of the medication at a time.  There was no negotiating on the price, but at least we only have to pay for two weeks at a time.  I've made appeals to all of the funding sources and am hopeful that something will come through within the next few months. 

I know that He will provide!