Lindsay McDonell: Diagnostic Testing
June 25, 2018
Lindsay McDonell, a breast cancer survivor and patient advocate, says that based on her experience with cancer treatment, she’s come to believe that chemosensitivity testing is one of the most important tests to have done. And it should be done early on, rather than waiting to see if the chemotherapy or targeted therapy does or doesn’t work or until there is recurrence.
Lindsay had none of the advanced or novel diagnostic testing after her initial diagnosis of breast cancer, because it was a common type of breast cancer with a standard treatment regimen. When she had a recurrence that was widespread and moving fast by the time it was found, she was prescribed standard treatment that was defined by her cancer center’s protocol. Two months later, the treatment wasn’t working and the cancer had metastasized to her liver. She asked for molecular testing of her tumor and the oncologist said that the protocol dictated that you have to fail four regimen before this testing would be done. The oncologist said she’d put Lindsay on Xeloda. Lindsay started the Xeloda and also insisted on having the Guardant genomic test to which her oncologist reluctantly agreed.
Test results came back as showing there were no drugs and only a few nutraceuticals to which the cancer cells were sensitive.
Meanwhile, Lindsay was exploring other treatment options and considering working with an integrative oncologist. One suggested she have chemosensitivity testing done by Dr. Nagourney, but there would not be enough of Lindsay’s tumor tissue available for the Nagourney test to be useful. Her research then led her to the integrative oncology practice of Dr. Ralf Kleef in Vienna, Austria. He sent off a sample of Lindsay’s blood to a lab in Germany for chemosensitivity testing. Those results came back as showing there were no drugs and only a few nutraceuticals to which the cancer cells were sensitive. Lindsay insisted on a tumor tissue sample being sent, even though Dr. Kleef thought the tissue sample results would be the same. They were able to obtain enough tissue from her sacrum to submit to the chemosensitivity testing lab. Interestingly and fortunately the sacrum tissue sample analysis said that the number one treatment was topotecan (a drug not usually used for breast cancer), and that a number of nutraceuticals would also be useful.
Meanwhile, the Guardant molecular test results arrived and revealed Lindsay’s tumor to have several mutations; the chemotherapy she’d had in the past was not indicated for these particular mutations. In fact, the targeted therapies that Dr. Kleef prescribed were not “approved” in breast cancer, but apparently targeted the mutations in Lindsay’s breast cancer.
The treatments are working for now, and scans find “no evidence of disease.”
Lindsay’s medical treatment has consisted of an integration of chemotherapy, targeted immunotherapy, nutraceuticals and hyperthermia. She is now able to receive the topotecan at her oncologist’s office, her IV nutraceuticals at an integrative medical practice in Chicago, and her oral and injectable supplements at home. She continues to see Dr. Kleef for the Opdivo and Yervoy, hyperthermia treatments and check-ups. She is not eligible to get the Opdivo and Yervoy in the USA. She has been turned down by insurance and Bristol Squibb because these are not approved for this use. The treatments are working for now, and scans find “no evidence of disease.”
She had to advocate for herself and do her own research, and that tenacity has extended her life.
Lindsay feels that if she had followed the protocol used by her conventional cancer treatment center she would likely be dead by now. She had to advocate for herself and do her own research, and that tenacity has extended her life. One can see why Lindsay is a proponent of non-standard diagnostic approaches—one size does not fit all. Lindsay is the living proof of that.