Kelly Pounds, 21-year Leiomyosarcoma Thriver
Kelly Pounds is a vibrant, active, 21 year-thriver who found a rock-hard, though painless lump in her right thigh Memorial Day Weekend, 2000. Fortunately, she was scheduled to see her GP the following Monday. Next, Kelly saw an orthopedist who took one look at the MRI, ordered an X-ray, and then sent her the following morning to Dr. Craig Jones, an orthopedic oncologist in Orlando. After a scheduled biopsy, Kelly had a three-week wait for the results. The reason? The results were so rare that the sample was sent to three different labs for confirmation. The diagnosis? Leiomyosarcoma. A subsequent bone scan showed some inflammation of the periosteum, the covering on the bone, while a CT of her chest, abdomen, and pelvis were negative except for a small cyst in the liver.
The treatment plan was for three rounds of AIM: adriamyacin/doxorubicin, ifosfamide, and mesna to be given 21 days apart, followed by resection of the distal femur and the four quads where the tumor was growing. The third round of AIM had to be postponed one week because of low blood counts for which she received a transfusion. Since Kelly’s follow-up surgery could not be scheduled for two months, her medical oncologist, Dr. Steven Mamus (then from MD Anderson/Orlando), decided she should have an additional round of ifosfamide/mesna to ensure the cancer did not have the opportunity to start growing again.
Kelly’s surgery was November 7, 2000. Though doctors thought the tumor was growing on the femoral artery, in fact, it was not. Thus, the original the plan to harvest a vein from her left leg, turn it upside down and use it to replace the femoral artery in her right leg and then remove all
four quadriceps and take muscles from her stomach to remake quadriceps muscles, was changed during surgery. Instead, three of the four quadricep muscles as well as the bottom six inches of the femur were removed. Kelly’s medical team shaved off the top of her tibia to insert an appliance that looked similar to a six-inch long golf tee down into it. They then drilled up into the top of the femur and inserted a rod, which connected to the rod in the tibia. Voila, a new knee! The rectus femoris, the “top” of the four quadricep muscles, remained.
During the surgery it was discovered that the original cancer had actually shrunk 98%, leaving only 2mm. No cancer was discovered in the bone, only in the muscles, and all margins were clear.
After surgery, Kelly was told 50% of people who had follow up radiation got a local recurrence, and 50% who didn’t also got recurrence. With this information in hand, she elected to not have radiation. What she did undertake was 92 two-hours of physical therapy to learn to walk again, which she now does without a limp. Stairs are not her best friend, but she can navigate them – slowly. In 2017, she completed a 53 mile local bike event, just to prove she could!
Kelly has been NED since surgery in 2000. She got CT scans quarterly as follow up initially. After two years that changed to every six months, and at five years to annually until 20 years out. Now she gets an annual chest X-ray.
Kelly would like to emphasize the importance of positive thinking. Not only did it help prevent anxiety, but it kept her focused on what she wanted and NOT what she feared. What also helped was connecting with others with LMS. She learned a tremendous amount from the LMS community online, could talk openly about “the cancer,” and be assured that she was not alone, and others there would understand.
As for her key learnings: “Good doctors make all the difference. My GP referred me immediately, the orthopedic doc realized it could be cancer and referred me to an orthopedic oncologist for the biopsy. And he referred me to MD Anderson where I found a sarcoma specialist who connected with MDA/Houston to discuss my case.”
As for a final reminder to all those in the trenches: The day Kelly checked in for her first chemo, she took the bed of an LMS patient who had a recurrence after 18 years. As a result, Kelly is a true believer in follow up scans!
If you are an LMS survivor of 7 years or more, please share your story and pass the hope forward! Contact Sharon at info@LMSDR.org