Yes, it's true! My last scans were just as amazing as I had hoped and prayed they would be. In the words of Dr. Wilky, "We are running out of things to measure!" She said that and a hundred flash mobs started dancing in my brain in celebration! But brain flash mobs don't translate well into words, so I just stared at her for a few seconds hoping that the dance mobbing would translate itself into words. I think I finally teared up and said "Uh, wow, okay, I don't even know what to say (insert dumb looking face with my mouth wide open and more seconds of waiting) Thank you, God!," which I felt was pretty good translation.
In May of 2016 I started the Axi Pembro Clinical Trial at the University of Miami for metastatic (stage 4) Alveolar Soft Part Sarcoma. On my pre-trial scans, they identified tumors in my heart, liver, spleen, spinal canal, right breast, right lateral chest wall, right deltoid muscle, left infraspinatus muscle, scalene muscle, subscapularis muscle, scalp, 2 vertebrae, right humerus, left hip, and brain. Widely metastatic and super scary.
Now 8 months into immunotherapy treatment, tumors only remain in my brain, heart, liver, and spleen. All evidence of disease is shrinking, with total tumor burden decrease of about 90-95%. The heart tumor (which is kind of the primary tumor) has reduced by 90%. All this for a type of cancer that had virtually no known systemic treatments!!
I plan to stay on the trial until it is completed in about a year and a half. I can't begin to express how thankful I am. The "primary" heart tumor found during my pregnancy was my 5th recurrence of ASPS, with my initial diagnosis at age 3. This is the answer to a lifetime of prayers from friends and family all over the world. God's provision and plan is woven into every detail of our journey, and all glory belongs to him for this marvelous rescue.
If you want to learn more about
- ASPS, you can go here: The One That Really Has To Go...ASPS
- Immunotherapy, you can go here: Immunotherapy 101
- Clinical Trials, you can go here: Clinical trials: what you should know to make an informed choice about your therapy
- Sarcoma, you can go here: What is a sarcoma
- Ali Pembro, you can go here: Axi Pembro Clinical Trial
- Me, you can go here: The Sullivan Story or Instagram
Thank you for your love, interest, and prayers. We could not have made it one step without our people (you!) supporting us. Thank you, thank you, thank you!