Wednesday, March 30, 2016

Progress At Last

First, a quick recap:

About 6 weeks ago we detected growth in the cancer in my heart that was being treated with targeted cancer therapy since May, as well as growth in several new places. This is my 5th occurrence of the disease, having been first diagnosed around age 3, then ages 6, 17, 21, and most recently at age 24 during my pregnancy with our now healthy 3-year-old daughter. I'm now 28 and in a long process of trying to enroll in a brand new clinical trial in Miami for a new immunotherapy drug combination to treat my Alveolar Soft Part Sarcoma. Schwoo, when I write it all out it seems like an awful lot! In reality we just wake up each day and put our trust in Jesus, that he is working through our lives for his glory, that he can use our story to bring hope to those around us, and that he will fill us with whatever virtue we will need that day.  

Yesterday we made a trip to Miami to finally sign the paperwork to get the ball rolling to get me into the clinical trial. The paperwork was the first step of several to becoming eligible for receiving the promising new treatment that this trial offers. Next up is a barrage of screening scans and tests that will determine whether or not I can be a trial participant and receive treatment. 

Clinical trials have very specific inclusion and exclusion criteria for its participants. Inclusion criteria refer to the  specific conditions that must be present in order to enroll. In the case of this particular trial, some inlclusion criteria include: sarcoma diagnosis, metastatic disease (sarcoma tumors present in multiple organs), etc. The trial's exclusion criteria refers to certain conditions that you must NOT have, or put another way, if you have these conditions you will be excluded from the trial. Exclusion criteria include: decreased heart function, high blood pressure, high liver enzymes, presence of metastases in the brain, etc.

In order to determine whether or not I meet the inclusion and exclusion criteria, I will have to do several screening tests that will be scheduled (hopefully) for April 12th-April14th. The screening tests include:

  • CT scan
  • Echo- test for heart function
  • Blood work
  • Biopsy: They will be able to use one of the skeletal muscle growths to do the biopsy- no squirming through my heart this time!
  • Brain MRI- tests for metastasis in the brain
  • PET scan: PET scans are very cool. Cancers are known to be fueled by sugars, so during a PET scan, patients are given a bunch of sugar with a radioactive tag. The tumors then show up on the scan as “hot spots” that appear much brighter than regular tissues because they have a much greater uptake of the sugar with the radioactive tag, thus illuminating the tumors. So essentially this will show where all the growths are, and can also show what portion of a mass is active cancer and what part is dead or inactive tissue. Technology, y’all. It’s amazing.

And maybe some others, but the papers are on the other side of the house and I'm in bed. You get it.

If I fail to meet any of the inclusion or exclusion criteria, then I will be ineligible for the trial. The areas that are most concerning are mets in the brain and heart function. My heart function has fluctuated over the last few years, improving after pregnancy with the addition of a beta blocker, then worsening with the addition of Sutent. Heart function will have to be over 40 for me be to be eligible. 4 months ago it was 48, so there's a fair amount of fluff there. The brain mets are a moderate concern as I haven't had a brain scan in about 2.5 years. If either of these factors are present, we would be able to treat them and then enroll in the study. But I would rather not have pitiful heart function or need brain radiation. This is something I will be on my knees about for the next couple of weeks, and invite you to be prayerful about as well.


In other news, I stopped taking my Sutent yesterday!! 

I started taking it in May as a targeted cancer treatment and have stayed on it these last 6 weeks even after we found out about the new growth. Because a little cancer treatment is better than no cancer treatment. I have to be off Sutent for 2 weeks before I can start the new targeted treatment pill- axitinib, we call it axi- that is part of the trial meds (this is not the immunotherapy drug, but another medication that will work hand in hand with it). That means that we have a goal date for me to start this first medicine on FRIDAY APRIL 15!!

Then one week after I start the axi I will be able to get my first immunotherapy IV infusion. This med is called pembrolizumab, or pembro. It has done very well for patients with malignant melanoma, a previously fatal diagnosis, as well as a few other types of cancer.

The trial will then require that I visit the Miami clinic every week for the first three months of treatment. They also require that I have a designated day of the week that I do all of my visits, so Fridays are my days. Friday April 15 is when I will start the axi (hopefully), Friday April 22 is when I will start my pembro (hopefully), and then clinic visits every Friday after that until forever. No, just for 3 months :)

So for those wondering if I am on the study now, the answer legally is YES, but there is still an important roadblock to pass before we know if I will be able to be a real participant. The screening tests will determine for sure if I will be able to receive the meds, and those will be April 12-14 (hopefully).

Congratulations, you made it to the end of my detailed explanations of clinical trials, PET scans, and our family calendar for the next few months!! You're a trooper!! Thanks for your dedication and endurance :)

Many have asked for more specifics to be praying for, so here are a few:
-smooth scheduling
-no brain mets (please, Lord, please!)
-good heart function
-an easy biopsy
-joy in 2 more weeks of waiting to start screenings
-that my body would become strong enough to fight cancer
-my sweet and strong husband
-my sweet and bonkers child
-open hearts to feel the Lord doing great work in us
-blessings for the many of you who are pouring into our lives!!

Before I stop typing, I have to share this with you:

Time magazine featured an article about immunotherapy that made great plane reading. It is a great article that talks about the benefits, the costs, the uses, the goal of clinical trials, and more. So if you're wanting to know more about immunotherapy in the context of the drug market and patient stories, stop and grab a copy.


  1. Always amazed at the doors He opens and the courage and faith you share as you go through these doors. The Lord has given the three of you an amazing group of people along the way; praises of thanksgiving for all of you that fit into different categories of their world. You administer knowledge and medication, prayers and praises, child care and home support., and love flows through you from the Father.
    I thank God for you all and encourage you to continue this path with this amazing little family. Prayers from the momma , the Mamie and the sister in me. And to my daughter and amazing son-in-law... well, you know.

  2. I can't write. I can only pray. So excited for you! XOXO Go ye, go ye!

  3. Love these new plans and the hope of new treatment that we've prayed for since the initial diagnosis in 1991. To your prayer list please add your parents (Mills & Sullivan) as we journey with you in the way that only parents can.

  4. I love you and I'll be praying my heart out these next two weeks. Get it, girl!

  5. Praying for you to have great heart function and ur brain scan to be perfect. Prayers God will rid your body of this ugly cancer.

  6. Praying for you to have great heart function and ur brain scan to be perfect. Prayers God will rid your body of this ugly cancer.