Sarcoma Survivor Stories - Meet Amy Mahaffey
When were you originally diagnosed and what sub-type were you given?
In the summer of 2015, I began to have pain in my left side. It felt like I may have cracked a rib. I let it go and continued my busy life as a wife and mom of three children. The pain continued and did not get any better. I noticed that I was becoming breathless climbing the stairs in our home and I was not sleeping well at night. I went in to the Doctor and had some blood work completed and all my numbers looked fine. My doctor did schedule a sleep study which came back stating I did not have sleep apnea, but they noticed I was not really sleeping either. A few more weeks went by and on Halloween, my husband put his arm around my side and squeezed and I remember the intense pain I felt. I knew I could not wait any longer. I went to Urgent Care on 11.1.15 and they did a chest X-ray. I immediately noticed that my chest X-ray did not look normal. They referred me to have a CT scan and determined I had some sort of a mass in my chest. This mass was causing the sleeplessness because of the pressure on my lungs.
From that point forward, things moved very quickly. I had so many tests and procedures in the weeks that followed leading me to a massive surgery on 11.19.15 where they removed a grapefruit sized tumor out of my pleural cavity. The tumor had attached to my lower lobe of my left lung, so they had to remove that lobe in surgery as well. I had a lobectomy by thoracotomy.
They sent my tumor all over the country to the top cancer research facilities to try to get an accurate diagnosis. We waited for nearly 5 weeks post surgery. My cancer was diagnosed as a Malignant Solitary Fibrous Tumor of the Pleura- a very rare cancer- so rare that it affects only about 1 in 30,000,000 people.
What was your initial reaction?
Things moved so fast after my CT scan results. We were shocked at how quickly life can change from normal to abnormal. We were flooded with the support and prayers of so many friends and family around the globe who committed to praying with us through the difficult things to come.
My husband, JP, and I chose not to tell our children I was having surgery until the day before it was scheduled. We waited until we had more information and more details in order to prepare them better.
Initially, we were fearful. However, the fear was quickly replaced with a perfect peace that can only come from God. We drew closer to one another as we trusted Him with something we could not control ourselves.
What is your treatment plan?
Initially, the treatment plan was a radical surgical resection. Unfortunately, they were not able to get positive margins when removing my tumor as the tumor had started to push into my chest wall. Therefore, after healing from surgery, I began 7 weeks of daily radiation to my chest.
I was monitored every 12 weeks with scans. There were some spots in my pleural cavity that looked suspicious to my doctor. We continued to follow all CT scans with a PET scan to see uptake. What we know now is that many sarcomas do not seem to light up on a PET scan.
After three follow up scans and these mysterious spots growing more, we did another biopsy which showed drop metastasis in my diaphragm.
What do you feel is the most important thing when going through cancer treatments?
It is really hard to narrow this down to one thing, so I will try to sum up what has helped us.
- Our faith- we have felt covered in prayer since all of this began 3 years ago. We have tried to be authentic in how we face each day. We live life with purpose and on purpose. We trust God to give us the strength to face the unknown things to come and we try not to think too far ahead.
- We choose JOY! It’s a choice everyday. Everyone is dealt different life circumstances, and while we don’t always choose what comes our way- we are always in charge of our response to it. We hope to instill this in our children as well- that our attitude when things are challenging makes a difference in the outcome.
- We let others in our circle. When we need help, we reach out. We rely on our family and friends to help fill in the voids with transportation, food, shopping when things are not smooth sailing.
- We love our care team. We have a relationship with our doctors, nurses, PA’s, medical assistants, pharmacists, specialists, and other patients. This is so important. These people are family to us. We all are given a story to share. We try not to waste the pain or the struggle- but to invest in others and try to make their journey lighter.
What is your next course of treatment?
In January of 2017 after a second round of biopsies, it was determined I had drop metastasis. At that point my oncologist at the time did not know how to direct my care. My cancer was so rare. He had never seen a case like mine. At that point, we started to make some phone calls and scheduled a visit to MD Anderson in Houston to meet with the top thoracic surgeon in the country and the team of Sarcoma Specialists.
After that visit, they recommended a first line chemotherapy regimen. I returned home to Charlotte, had a power port placed and began a regimen of Avastin and Temodar. I was on that cycle for 4 months.
They determined that those drugs were not controlling the growth very well. Then I began a chemotherapy regimen of daily Votrient. This caused all my hair to turn white. I took Votrient for about 4 months.
Neither treatment was very successful and so my oncologist recommended we look into a clinical trial with Carolina BioOncology Institute.
We started a Phase One/Phase Two Clinical Trial which combined two chemotherapy drugs and two immunotherapy drugs at the same time. One drug was the trial drug. I was on this treatment from 10/17-5/18. Throughout this treatment I lost my hair for the first time, but then it started to grow back. Unfortunately, my tumors continued to grow more.
After that, I returned back to my regular oncologist and started another harsh regimen of Doxorubicin and an immunotherapy drug called Lartruvo. I was on this for 6 cycles. This combination did have a good response on my tumors, but was limiting because of potential heart damage. In the late fall of 2018, I returned to Carolina BioOncology to be enrolled in another trial.
Presently, I am on Week 15 of weekly chemotherapy on Paclitaxel. I am also about to restart a ground breaking First in Human Immunotherapy Drug that targets antibodies.
It has been nearly two straight years in constant treatment with chemotherapy or immunotherapy. My body gets really tired sometimes, so at those times I try to rest. Overall, I am really thankful that I can do all the things I normally do- drive our kids to activities, have sleepovers, cook (sometimes), clean, go to church, spend time with friends, and enjoy each day.
My tumors are all still growing- but slowly. We are hopeful for a groundbreaking treatment that can get rid of them completely, but until then, we try to be thankful that the tumors are not multiplying or spreading other places. They have determined that my tumors are unable to be surgically removed at this time.
What is the best piece of advice you can offer someone going through a similar situation as to what you have been through?
You can do hard things! Don’t believe everything you read on the internet. Surround yourself with people who are bucket fillers. Find joy in each day. You can always choose a different response. Smile. Be grateful. Each day is a gift and not promised to anyone.
What is one positive thing that has come out of your experience?
I think about how God can take the biggest mess in our life and transform it into the most powerful message. My journey with Sarcoma has changed our family. It has taught us to trust God in all things and to rely on Him each day. It has also connected us with so many people we would never have known otherwise. I met a beautiful friend online who shares the same sub-type of Sarcoma. She lives in Istanbul, Turkey. I have been so blessed to be able to meet her face to face- twice- throughout this journey. She is like a sister to me. We are drawn to one another because we both understand what living with Stage 4 cancer looks like each day- and are thankful for the shared strength in shouldering a heavy burden together rather than carrying it alone. JP and I have felt more love and support in the past three years, than in our whole life combined. We all really do need one another!