In January 2013 my husband was diagnosed with prostate cancer. Thankfully, after surgery he was cancer free.
But in May 2015 our whole world seemed to turn upside down when he came home with a very unusual sore in his mouth. Fearing the cancer had returned, Tony went to our family doctor and was immediately sent to an oral surgeon for a biopsy. He had the results within days, but the outbreak spread like wildfire. By the following week, it had reached his entire mouth, sinus cavities, and throat. He was in severe pain, he couldn’t eat or drink and could barely speak.
The drive home that day was silent, both of us trying to stay calm and remember what the doctor had said. When we arrived home, we both went directly to the computer to research PV — which was the wrong thing to do.
While sitting in the oral surgeon’s office for what seemed like an eternity waiting for the results, the doctor assured us it wasn’t cancer, but instead told us Tony had pemphigus vulgaris. It was something we had never heard of and the doctor wasn’t that familiar with it either. He quickly explained to us what he knew about the disease and referred Tony to a dermatologist.
The drive home that day was silent, both of us trying to stay calm and remember what the doctor had said. When we arrived home, we both went directly to the computer to research PV — which was the wrong thing to do. Thankfully, the dermatologist, who was familiar with PV, was able to see him quickly.
Needing to understand this disease, I searched the internet for a support group and stumbled upon a video of Becky Strong. After a bad experience with someone claiming to be a PV support group, I researched more about the IPPF and finally reached out to Becky. We met for coffee and it was our first connection with a patient – someone who understood – someone who had been through the same pain and treatment – finally, someone who connected with Tony. That talk with Becky gave Tony the confidence to contact peer health coach Jack Sherman, who gave him the support he needed when he needed it the most. We can’t thank Jack enough. Our Austin, TX visit for the IPPF Patient Conference was priceless. How can you put a price on finding someone with the same rare disease, let alone an entire room of patients willing to share their stories and assure you there is hope?
Unfortunately after 21 months of a combination of prednisone and Cellcept, the treatment wasn’t enough to control Tony’s disease. He is now seeing a specialist at University of Illinois at Chicago and has been recommended for IVIg and Rituxan treatment. He has completed all of his pre-testing and is awaiting insurance clearance and a start date. These treatments are very expensive so the family is hosting a benefit to help cover some of the medical costs. IPPF has been generous in supplying us with materials to help educate everyone and we hope to spread awareness of this crazy, confusing disease.