Sandra Griego: Keeping Cancer Under Control Thanks to a Clinical Trial

I was diagnosed with a rare type of cancer called epithelioid sarcoma in April 2016. The cancer was causing me immense pain and I could not use my left arm. I was told that I had two options: radical amputation of my whole left shoulder or enroll in a clinical trial testing an oral medication called tazemetostat (Tazverik). I had no hesitation in choosing the clinical trial. I’ve been taking tazemetostat for a little over 4 years now. The cancer is under control, I have far less pain than I used to, and I have regained some use of my left arm. It has been tough, but I have so much to live for.

In May 2015, I began feeling tingling in my left arm. It felt like pins and needles. Over time, the tingling would last longer and longer. I also began feeling pain in my left shoulder. I eventually went to my primary care physician who referred me for physical therapy.

I had physical therapy for several months, but the pain continued to get worse and worse. I saw an orthopedic specialist, had many tests of my nerve function, CT
scans, and biopsies. In total, it took 11 months before I was diagnosed with stage 3 epithelioid sarcoma. It turned out that this is a rare type of cancer; the doctors had to send the biopsy to a hospital in Boston to get confirmation of the diagnosis.

At my worst, the pain in my shoulder was so great that I could not use my left arm. I could not use a fork or curl my hair, my husband had to do it for me. I had to hold my left arm up with my right hand and I had to learn to write with my right hand because I am a leftie.

When my oncologist gave me the diagnosis, he brought a whole team with him to explain my treatment options, a surgeon, a nurse practitioner, and a clinical trial
coordinator. The surgeon explained that I could have a radical amputation. He pointed to the bump on my neck and said he would have to go and take my whole shoulder out. It sounded absolutely awful. Then, the clinical trial coordinator told me the alternative was a clinical trial testing a new treatment. For that, I would have to take eight tablets a day, four in the morning and four in the evening.

My husband and I were given a few hours to talk before we had to make a decision. It was a no brainer to choose the clinical trial.

Since July 2016, I have been taking tazemetostat every day. I have a CT scan every 4 weeks and then go to Denver to have blood work done and to see my oncologist. If all looks good, I get another 4 weeks of tablets.

After two or three months, I was excited when the CT scans showed that the tumor had shrunk substantially. It hasn’t completely gone, but it hasn’t grown either,
which is really good. My oncologist says that this is called a partial response and it is a win for patients with epithelioid sarcoma.

For me, the pain has eased a lot; I need far less pain relief than I did. I don’t have full use of my left arm, but I get what I need to get done; I am a licensed childcare provider and I currently look after eight children a day.

My experience has taught me that I am a lot stronger than I thought I was, but I could not have done it without the support of my family and friends. My husband takes care of me, two of my sisters each gave up time to stay with me, another sister flies with me to my oncologist appointments; and my neighbor drove me to my appointments for a year. It was hard at first to accept that I needed so much help, but I am so grateful to all of them.

I am also grateful to have had the opportunity to be part of the clinical trial. I do get fatigued, going to bed at 6:30 p.m. some days, but it allowed me to keep my arm. More importantly, I’m alive, and I get to see my son and daughter thrive.