When I was 38 my symptoms started with me urinating more frequently than usual and feeling tired from time to time; however, the symptoms would come and go. In February 2015 I had a TURP which showed Papillary urothelial carcinoma, low grade with foci suspicious for subepithelial invasion. A rare fragment of muscle, with no evidence of invasion. I then had another TURP in February 2015 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 IV bladder cancer at the age of 39 receiving a grim survival statistics 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 get established as a patient if my cancer ever returned that way I would have more treatment options available to me. During the six cycles of chemotherapy, it was a scary time, but I had an excellent medical team who provided me with education and support, as well as a magnificent support system from 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." On April 2017 a recent 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 and Pembrolizumab. In 2017 Curtis was awarded 2017 Best of BCAN Award in appreciation for volunteer excellence and commitment to the Bladder Cancer community. In 2018 my Bladder Cancer returned, and I am currently in treatment again receiving Immunotherapy and FGFR inhibitor. The current treatment is working to shrink the cancer tumors! I will have more updates in September 2018. As of December 2018, Curtis is still undergoing immunotherapy and FGFR inhibitor treatment for his metastatic bladder cancer. Curtis is participating in a research project that incorporates cardiorespiratory fitness and strength. Exercise also affects the immune system by moving cells capable of fighting infections and cancers into the bloodstream. Further, 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 side-effects such as nausea and fatigue and improve the effect of cancer therapies. The aim of this study is to determine if these redistribution of immune cells are similar in patients with cancer and what the effects of infusion therapy are.
Bladder Cancer treatment has been an emotional and scary time for my family and me, 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 my family and me, and… why did this happen to me? I spend much 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 what I am exposed too. I also live in the moment more so now than ever. I don’t stress about things, and I 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, and it is essential to have the patient-doctor relationship. Always ask as many questions as you can and make sure they have your best interests in mind all the times. Always remember you're are not alone on your cancer journey.