Edgar MacIntosh (he goes by Ed or Mr. Mac) survived a life-threatening car accident as a teenager and endured over 150 X-rays to his neck and head during his recovery. Much later in life he was diagnosed with a rare thyroid cancer, and his oncologists explained to him that his cancer might be linked to those earlier X-rays, which helped save his life.
Clockwise from left to right: Deborah Allen, James Doroshow, M.D., Michelle Eugeni, Ramya Parthasarathy, Edgar MacIntosh, Shivaani Kummar, M.D. (Photo: R. Baer)
Ed’s cancer experience began in 2001 with a pathology report describing his thyroid tumor as a Hürthle cell type, that in some cases can become malignant and metastasize to other sites. Ed was one of the rare cases. He sought conventional treatment with surgery and radioactive iodine and completed several different drug protocols offered at two different hospital centers, until one fateful day when his oncologist told him that there was nothing more the doctors could offer him.
Ed did not consider that an acceptable response, so he took action. Armed with his computer and email, he described his diagnosis and the treatments he received, and he broadcasted a call for help across the Internet to several cancer centers nationwide and to the NIH. A CCR nurse answered his plea, and in July 2007, Ed paid a visit to the NIH Clinical Center to meet with Shivaani Kummar, M.D., and her research team. From that day forward, they have teamed together to fight his cancer.
Ed tried several clinical trials. As he says, “some worked and some didn’t.” A new study using a novel agent in combination with topotecan, a cancer drug approved for use in lung and ovarian cancer, stabilized his tumor but did not shrink it. He is now trying a combo therapy of pazopinib and tivantinib. Pazopinib blocks new blood vessel formation but, in doing so, it creates a state of low oxygen which can result in cancer cells becoming resistant to treatment. By adding tivantinib, one of the growth pathways of cancer cells is blocked and it may prevent the development of resistance in cancer cells. Ed hopes that the combo will kill the cancer cells faster than either single agent alone.
Ed sees his struggle this way, “My tumor knows me very well, but I know my tumor very well, too. I have been fighting it for years. Next year, it will be a teenager, but I can handle it. The treatment I am now taking did not even exist 5 years ago, so I will keep fighting, and new treatments will come along.”
As new growths appear in Ed’s lungs, he goes to the hospital for bronchoscopy and excision, and he donates biopsy samples regularly. According to Ed, “They are not painful, and the information they can provide to my clinical care team can save lives, so I’m glad to do it.”
Ed does not get discouraged or depressed about his cancer. He values the CCR clinical staff who search for new treatment options for him. Meanwhile, he enjoys his family and grandchildren and soldiers on. As he explains, “If Dr. Kummar and her team are willing to keep on fighting my cancer, so am I.”