An adjuvant kidney cancer clinical trial Journey – Everolimus (Afinitor)
It all started when I was walking down the hallway at work towards the mail room, one day in November 2012. I thought I was walking very well that day and I noticed it. On the way back from the mail room, the outside of my left foot hurt and I started to limp. I went to the Dr and she sent me for X-rays…sure enough I had a stress fracture in my 5th metatarsal. They put my leg/foot in a cast and it started going downhill from there.
I caught a really bad cold the week after that. I stayed home from work on Friday and on Saturday, I had a bad pain…generating from my right back to my right front. I just knew that I had pneumonia. I kept a heating pad on all weekend and didn’t even sleep in bed on Sunday night. My husband, Tom, got up on Monday morning 11/5/12, at 5:30, to check on me and I told him that I needed him to take me to the hospital. They did a CT of the chest and found a Pulmonary Embolism (PE). What they didn’t tell me, until I was admitted, was that they also found a mass in my left kidney. I was placed on blood thinners and had to wait 4 months until my PE dissolved before I could have surgery.
On 3/19/13, I had a full left robotic nephrectomy. I was in the hospital in IA City, IA for 48 hours, from Tuesday noon until Thursday noon. Because my tumor was stage 3, my Oncologist in Ames, IA suggested I consider enrolling in a clinical trial for patients at high risk for recurrence. I was a bit hesitant, but decided on 5/3/13, to start a clinical trial for Everolimus (Afinitor). I took the drug for 56 weeks…one 10 mg pill per day. I had moderate side effects: mouth sores, sore tongue, sore throat, enhancement of my osteoarthritis, muscle aches and severe fatigue. To this day, my osteoarthritis is severe in my left hip, lower back, upper back, neck, shoulders, wrists, thumbs and hands. I have since gotten peripheral neuropathy in both feet and ankles and fibromyalgia.
BUT… I remain NED!!
I lost my husband in November of 2014, to a heart attack and subsequent bypass surgery. And, I had a breast cancer scare, just 2 weeks after he passed away. I have a couple of cysts in my liver, which have been further investigated with an MRI and have remained stable. As most of us will agree, annual scan time causes severe scanxiety!!
My next Oncology appointment and scans are scheduled for early May 2019. I pray that I remain NED!
Patty McLaughlin is a stage 3 kidney cancer survivor and is a KCCure Ambassador.
Have you been diagnosed with localized disease (stage 1, 2 or 3 kidney cancer)? Many patients struggle with high levels of anxiety related to fear of recurrence and follow-up scans. If you’re struggling – KCCure has a patient community that might help. Join the KCCure 1-2-3 Patient Community to connect with others!