Carie Gort

My name is Carie Gort and I was diagnosed with metastatic renal cell carcinoma (mRCC) in August 2019.

My first course of treatment was an immunotherapy combo. I was fortunate to have virtually no side effects (SEs) and was able to stay on this treatment for 18 months before it stopped working.

Immediately after stopping this treatment, I was approved for a clinical trial that combined 2 different targeted agents together. Prior to starting treatment, my doctor went through the potential SEs with me. The potential SE that was the most concerning to me was hypoxia. I was fortunate not to be in the 10% of patients who experience this.

I did, however, start to experience the effects of something called hand/foot syndrome (HFS), a common SE from tyrosine kinase inhibitors, which are the most widely prescribed drugs for mRCC. My doctor had warned me about the potential for this side effect, so I wasn’t totally surprised.

For me, HFS caused painful peeling on my hands and feet. My feet were significantly worse. At times it was difficult to walk as a result. I had heard of people having to quit their jobs because of this particular SE. The part of my foot most impacted has been my heels and the side of my big toe. It starts with dry, cracking skin that builds up in those areas, which then leads to pain and soreness.

I followed my doctor’s advice to keep skin moisturized and used a lotion that contains a high level of urea. But this strategy didn’t really help very much. I decided to research other options on my own.

The first thing I tried was using hydrocolloidal bandages. The bandages are moisturizing and assist with healing in addition to protecting the skin. The bandages really helped by protecting the skin. I was shocked at how much the pain decreased when wearing them. But while the bandages helped me walk pain free, they didn’t get rid of the underlying condition that was causing the sores.

Fortunately, through the KCCure (Kidney Cancer Research Alliance) on-line patient community, I learned about glycolic acid pads. Glycolic acid is a water-soluble alpha hydroxy acid that speeds up cell turnover. It’s one of the most widely used alpha hydroxy acids in skin care products. Most people use it as an antiaging treatment. Each night, using a premoisterized pad, I applied glycolic acid to my feet, paying special attention to calloused areas. In addition, I continued applying lotion a few times a day. Within a week, I noticed that the cracked, peeling skin was almost eliminated. By continuing with this routine, I have almost eliminated symptoms from HFS. It is important to note that the critical component to this treatment working well is consistency. Staying on top of this every single day is key, even on days you feel like it’s not needed.

Current therapy for mRCC requires continuous, daily treatment. While these new drugs are keeping people alive longer, we also have to live with the SEs every day. There is little incentive to research and develop solutions for managing these treatments. But when patients work together, they can share and promote effective strategies. I know that glycolic acid might not work for everyone, but it might make a big difference for someone who is suffering from HFS. I’m grateful to the AUA for creating this program and offering a platform for us to inform others and improve care!