This message of working with instead of against cancer is counterintuitive to most. However, Lindsay McDonell found it to be the cornerstone of her methods of dealing with cancer.
She underwent neoadjuvant chemotherapy treatment to shrink the tumor before surgery with a regimen of AC-T (Adriamycin, cyclophosphamide, and Taxol). Then, she went under the knife for a double mastectomy. Unfortunately, in a surgical mishap, she woke up with bad news. The surgeons had inserted humongous implants, but more importantly, they did not get good margins. Radiating her new, wrong implants was the next step. The 28 radiation treatments were horrible, tightening and burning her skin. After the radiation, her oncologist prescribed Arimidex because the cancer was estrogen receptor-positive. This means that by taking an estrogen inhibitor like Arimidex, her body would hypothetically stop feeding the cancer. Finally, after the chemo, surgery, surgical mishaps, radiation, and medications, she received a “free and clear” prognosis from her doctors.
Over the next few years, her life changed drastically. From “free and clear” to recurrence, her health and her hair came and went. She had metastases all over her body, including most of her organs, her bones, and her skull. Her oncologist-turned-friend Dr. Regina Stein encouraged Lindsay and her resilience. She took consistent blood tests and full-body CAT scans, MRIs, and bone scans to detect cancer progression. They worked together to find a cocktail of medications to treat Lindsay’s full-body metastasis with letrozole and Ibrance.
However, Lindsay got the news that the drugs failed and she had progression. It was time for plan B. She went off of letrozole and Ibrance and started capecitabine. At this point, surgery wasn’t an option, so in the event that capecitabine didn’t work, Lindsay needed a plan C. Because surgery wasn’t an option, she had to learn to live with it instead of fighting it. She calls it “dancing with cancer.” She thinks this mindset was critical to lessen the stress of having a body full of cancer.
At the Annie Appleseed Conference in Florida, Lindsay heard of Dr. Kleef’s innovative hyperthermic treatments. After speaking to Dr. Moss, a skilled cancer consultant, Lindsay visited Dr. Kleef’s Medical Center in Austria. During her first visit with Kleef, he thought that he wouldn’t be able to treat her. From her diagnostic reports, he suspected she had swelling in the brain, making hyperthermia an incompatible treatment method. Lindsay hadn’t gone all this way for nothing. In an act of patient advocacy, she asked him to confirm whether or not there was actual brain swelling. The test indicated there was no brain swelling, so she would be eligible for the treatment. This final push helped Lindsay get the treatment she came for, and what she would ultimately attribute her survival to.
With Dr. Kleef, Lindsay spent three months undergoing a combination of four different types of hyperthermia. These treatments involved heating the body to 104.5° F to stimulate the body’s own immune response. Additionally, she was given intravenous high-dose vitamin C, alpha-lipoic acid, fractionated immunotherapy, and a fractionated chemotherapy treatment of topotecan.
The type of chemotherapy Dr. Kleef administered was based on a chemosensitivity test done in Dusseldorf, Germany. Chemosensitivity tests assess which chemotherapies or nutraceuticals have the best chance of stopping any person’s specific cancer. This ensures that tumors respond well to different chemotherapies before undergoing treatment. This increases the chance that her body would respond well to the chemo. Two weeks of this three-month process were spent in continuous whole-body hyperthermia. This included IL-2 (interleukin-2) treatment to maintain her fever for five days straight. She went through this entire process in Austria five separate times. After each of these treatments, the tumor markers in her blood came down. Many people undergoing similar treatments did not see good results, and Lindsay considers herself lucky.
About two years later, with more metastases in her bones, Lindsay consulted with Dr. Rosenberg in Boca Raton. He referred her to Dr. Jason Williams at the Williams Cancer Institute in Mexico City for a fairly new treatment. She received injections of Anti-OX40 and Yervoy, immunotherapy drugs, directly into several tumors to stimulate her immune system.
The combination of the continued topotecan, hyperthermia, and immunotherapy kept Lindsay somewhat stable for a period of time.
Lindsay’s treatments outside of the U.S. were not covered by insurance. She paid about $40,000 out-of-pocket for each of the five treatments with Dr. Kleef and $80,000 for her treatment with Dr. Williams. Although these treatments are very cost prohibitive, they proved that working outside of conventional U.S. cancer treatments can be effective. As these treatments become backed by more studies, the FDA is beginning to incorporate them into medicine in the U.S. and is beginning to offer coverage for things such as some immunotherapies.
Then, she had another recurrence. At this point, they did a liver biopsy and sent it for a Tempus test which showed there was BRCA 2 mutation in her tumors. After her initial diagnosis, a blood test for a BRCA 2 mutation came back negative. But not the tumors in her liver. Her cells mutated locally, a somatic mutation, instead of a germline mutation which is systemic. The detection of the BRCA 2 mutation opened up new treatment options for her. She started Lynparza, a PARP inhibitor, to target those mutations.
Soon after, her white blood cells started going through the roof. After a bone marrow biopsy, they found that she had developed CML(chronic myeloid leukemia). In response to that, she started taking SPRYCEL, which brought the CML down to an undetectable level. It also seemed to work very well in conjunction with Lynparza, as she has been stable for three years.
Currently, Lindsay has regular scans every six months and bloodwork done every month. During the bloodwork, she has a Fulvestrant injection. Now, dancing with a body full of cancer, she is living a beautiful life. Read more about how she coexists here.
“The idea of constant battling and the possibility of someone saying ‘She lost her battle with cancer’ struck me as the worst yet the most common way to look at this. It was exhausting. I realized I had to find a different solution. And I realized that really what I was doing was ‘dancing’ with cancer. My cancer is terminal. In theory, I will never be rid of it. But if I’m in this for the long term, I have to accept my cancer. Sometimes it progresses, sometimes it recedes, and most of the time, it’s fairly stable. By not looking at it with animosity and by looking at it with curiosity instead, I allow myself to not be crushed by fear. From that place, I am able to be more creative to find solutions as to what the newest steps might be calling for.”
This message of working with instead of against cancer, or dancing with cancer, is counterintuitive to most. However, Lindsay found it to be the cornerstone of her methods of dealing with cancer. There is plenty of research on how mindset affects outcomes for people with a chronic or terminal illness, and Lindsay is no exception. Lindsay’s message is special because it empowers people to have hope and take realistic steps to protect their own survival—even if it doesn’t mean remission.