Amy’s Acromegaly Story: Part 2

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Read Part 1 of Amy’s Acromegaly Story here.

The doctors told me that they felt the surgery removing the tumor was successful, but because of the position and size of the tumor, they were unable to remove 100%.  My vision returned to normal, but my GH levels were still above average.

Hoping the radiation would destroy the remainder of the tumor cells over the next few years, I began my quest to medical control. I started with a somatostatin analog and after about 6 months, my levels remained elevated. We decided at that time to switch to growth hormone receptor antagonist. I responded more favorable to this therapy, but still never reached normal IGF1 levels.

Frustrated and disappointed, I decided I needed a break. By now, it was 2008 and my desire to continue growing my family was still on the forefront of my mind. I decided to begin the process of consulting with a reproductive endocrinologist to pursue having my second child. Within 2 months, I successfully became pregnant and discontinued all medical therapy for the duration of my pregnancy. I continued to monitor my labs and received several MRIs during the course of my pregnancy. My GH and IGF levels remained elevated, but thankfully we saw no changes in the residual tumor in the scans. In August 2009, I was blessed with my beautiful second daughter.

After deciding my family was now complete, I was able to really focus on my personal medical treatment and explore new options for medical treatment of Acromegaly. I switched my endocrine care to a new doctor with more experience, deciding to make a 2 hour commute to receive more experienced care. My new doctor recommended a combination therapy of both a somatostatin analog and a growth hormone receptor antagonist.  After routine blood testing and several dose adjustments, I finally reached normal IGF levels. In 2010, 3 years after initial diagnosis, my medical team decided to administer another round of Gamma Knife radiation.

Over the next six years I continued to receive a combination of medical therapy, and my levels continue to be well controlled. Hoping the long terms effects of the radiation treatments had finally been realized, I began to taper off medications. In October 2016, I eliminated the somatostatin analog from my therapy. Six months later my levels remained controlled.  Since May of 2017, I’ve slowly lowered the dosage of the GH receptor antagonist and continue to see normal IGF-1 results. I should know within the next year whether I can be controlled without medication, I remain cautiously optimistic.

Through this journey my family life has also changed drastically.  In 2011, my marriage of 7 years ended, and I became a single mom.  Initially this shock was jarring and I thought it might be the last straw in me keeping my head above water. But it turns out in the end it was actually the catalyst I needed to become empowered and independent. My daughters and I are a strong family, and my extended family has stepped in to fill any gaps.

About the Author: My name is Amy Beller and I’m a Business Analyst from central Illinois. I’m a proud mom of two amazing daughters and one super pooch. I love cooking, crafting and camping. My girls and my career keep me busy and I wouldn’t trade our over committed life for anything. I’ve lived with Acromegaly for the past 10 years – a roller coaster of symptoms, surgeries, radiation and a range of medication. I work hard to stay on top of my disease and treatments and live the most fulfilling life possible.

 


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