I am currently receiving pembrolizumab (Keytruda), a PD-1 checkpoint inhibitor, and pemigatinib, an FGFR inhibitor, for metastatic bladder cancer.
I was 38 when my symptoms started with more frequent urination and feeling tired from time to time. However, the symptoms would come and go. In February 2015, I had a TURP which showed low grade papillary urothelial carcinoma, with foci suspicious for sub-epithelial invasion—a rare fragment of muscle—with no evidence of invasion. I then had a second TURP and had a right double J stent placed. After being hospitalized for two weeks, I began having regular cystoscopies and follow up visits with my urologist. For the next nine months, everything was going well. My cystoscopies were coming back all clear, and there were no signs of cancer in my bladder.
In December 2015, a CT scan showed spots that were concerning to my urologist in my lung and retroperitoneal node. My urologist then referred me to see a medical oncologist, and on December 31, 2015, I was diagnosed with stage 4 bladder cancer at the age of 39, receiving a grim survival estimate of one to two years.
Over the next five months, I had an open lung biopsy to remove the lung nodules, port placement, genetic testing, and received six cycles of gemcitabine and cisplatin. During this time I would also visit Duke Cancer Institute to become established as a patient. This way, if my cancer ever returned, I would have more treatment options available. During the six cycles of chemotherapy, I was scared, but I had an excellent medical team that provided me with education and support, as well as a magnificent support system for my family.
Once I finished chemotherapy in May 2016, my CT scans showed no evidence of disease. Over the next 11 months, I would have surveillance check-ups, which included CT scans and cystoscopies every three months, and I continued to hear the great news: “no evidence of disease." In April 2017, a CT showed mediastinal adenopathy. I was shocked to hear this news from my oncologist. The next step was to return to Duke Cancer Institute and explore what clinical trials would be available to me.
I was able to start the Incyte 101 clinical trial in May 2017, making me the second person in the world to receive the study drug (pemigatinib, an FGFR inhibitor) and pembrolizumab. That year I was awarded the Best of BCAN Award, in appreciation of volunteer excellence and commitment to the bladder cancer community. In 2018, my bladder cancer returned, and I am currently in treatment, receiving pemigatinib and pembrolizumab. The current treatment is shrinking the cancer tumors!
As of December 2018 I am still undergoing this treatment for metastatic bladder cancer. I am also participating in a research project that incorporates cardiorespiratory fitness and strength. Exercise affects the immune system by moving cells capable of fighting infections and cancers into the bloodstream. Acute exercise also redistributes blood flow to organs and reduces blood flow to the stomach. Therefore, acute exercise during infusion therapy has the potential to reduce my side effects, such as nausea and fatigue, and improve the effectiveness of treatments. This study aims to determine if this redistribution of immune cells is similar in patients with cancer, and what the effects of infusion therapy are.
Bladder cancer treatment has been an emotional and scary time for me and my family, filled with a lot of unknowns and questions. I faced the real challenges of dealing with the diagnosis and treatment, but of course, I also worried about what would happen to me and my family. (“Why did this happen to me?”) I spend a lot of time learning about bladder cancer and educating myself on what I can do to continue to fight cancer. I also try to find ways I can raise awareness about bladder cancer treatments and continue to get bladder cancer out there on social media. I now pay more attention to what I am eating, what products I am using, and to what I am exposed. I also live in the moment more now than ever. I don’t stress about things and enjoy life as much as I can. I was and still am lucky to have a great family support system, as well as a medical team that has been patient in answering my questions and helping me to understand my diagnosis and treatment options.
My advice to newly diagnosed patients is to rely on your family and medical support system. Do not be afraid to tell your doctors and relatives what you need from them. Have discussions with your doctors and let them know you need time with them, as it is essential to have a good patient-doctor relationship. Always ask as many questions as you can and make sure they have your best interests in mind at all times. Always remember that you are not alone on your cancer journey.