Metastatic Lung Cancer

Hello everyone! I recently read Rene and Edward's book and was so intrigued by Rene's story. Thank you so much, Rene and Edward, for sharing your inspiring journey with us and giving me a better understanding of how the immune system works and the options involved with immunotherapy. After reading about Dr. Old's contributions to the growing field of immunotherapy, I too am thankful for his influence. I hope to be one of those patients that benefits from the use of immunotherapy and would like to share my story with you. I was recently diagnosed with Stage IV Lung Cancer, primarily Adenocarcinoma with traces of Squamous Cell at the age of 38. This was a devastating blow for my family, and sent my husband and I reeling. I am a never smoker, healthy eater, full time working mom of two young children. We were initially told that I had lung cancer staged as 1A and that all lymph node biopsies and PET/CT scans were negative for additional cancer. "Curative" surgery was recommended, and we consulted with a thoracic surgeon who wanted to do a traditional thoracotomy to remove my upper right lobe where the 2.5 cm tumor was located. Thankfully his brusque manner and unwillingness to discuss less invasive options gave me pause, and we garnered a second opinion for a minimally invasive robotic surgery at a larger university hospital. During the robotic procedure the surgeon quickly realized that the primary tumor had spread to the pleural space of the lower right lung, and could not complete the lobectomy. He instead took a small wedge for biopsy from the bottom portion of the lung where small nodules were located, and closed me up. I shudder to think how this scenario would have looked had I given in to the demands of my well-meaning family and had the traditional thoracotomy. After being led to believe that I was in the early stages of this disease, our worlds were rocked again. I can relate to Rene's chest tube experience, as this was the worst part of the surgery by far! The surgeon stated that the space between my ribs was small, and it indeed felt as if a garden hose had been shoved between them!
Two weeks after surgery we met with an oncologist who was very kind and compassionate, but not hopeful of doing anything other than holding the cancer at bay for as long as possible with Xalkori. While Xalkori was a good option, I didn't like the idea of just holding the cancer at bay and leaving it at that. He did later offer a clinical trial involving Xalkori and a PD-1 inhibitor, however, I did not have good feelings about this particular trial and rejected it. I was thankful that I did, because he told us about two months later that the trial hit a roadblock and had to be discontinued. Participants who had started taking these drugs were no longer being provided access to the PD-1 drug. He did not offer us PD-1 drugs or discuss them in any detail. I began researching other options and ran across ISSELS, interested in doing more to boost my immune system. While researching a forum about ISSELS, I was led to an interesting post about cryoablation and a doctor from my state who was performing a procedure pairing cryoablation with intratumoral immunotherapy injection. I had read about radio frequency ablation, but didn't know much about cryotherapy or this combination therapy. I e-mailed the doctor with my information to determine if I was a candidate, and received a return e-mail Monday morning. His secretary stated that he was available less than 3 hours away Tuesday and would see us for a consult immediately if we would come. We excitedly accepted and immediately traveled to gather all of the necessary records and scans to take with us the next day. We were so impressed with this doctor, and extremely grateful that he spent over two hours with us answering all of our questions and describing this process in detail. He was not condescending of the radiologists and doctors who viewed my scans prior to surgery, however he showed us that I was clearly Stage IV according to those same scans. Because the intratumoral injection, which consisted of a combination of FDA approved immunotherapy drugs including Yervoy, was not approved for administration in the US, we agreed to have the procedure completed in Mexico City where the doctor's team could obtain the drugs at cost and provide my care without issues. I would also take drugs that would act synergistically with the cryoablation and intratumoral injection, such as low dose cyclophosphamide, to "take the brakes off" of my immune system. I was placed under general anesthesia for this particular procedure since the needle involving the injection is rather large to say the least! The procedure went well, and only left me with soreness and a small band-aid. Because I was still quite sore from surgery, however, I experienced a lot of pain and muscle spasms in those incision areas. We waited to see if my body would respond to the procedure with the anticipated immune reaction of fevers, body aches, and night sweats. The next afternoon I began having pains in my shoulder, body aches ensued, and a low-grade fever began creeping up. I felt rough all night, but was so pleased to have an immune response! I was released from the hospital a few days later. I had a small pneumothorax, but this would eventually resolve without incident. I experienced fevers off and on for the next two weeks, and severe night sweats a few times after returning home 7 days later.
Thankfully my oncologist back home agreed to work with our new doctor, and was aware of our procedure. Although he was not excited about us traveling out of country for a procedure that was not FDA approved, we knew in our hearts that this was what we had to do. Friends donated graciously to us to allow us to pay for travel and expenses. I was supposed to begin receiving system Keytruda infusions two weeks after my procedure. My oncologist requested that my insurance company pay for this drug, however, because my tumor is partially ALK driven and I had not yet been prescribed Xalkori, they would not pay for the PD-1 drugs, and the oncologist was severely reprimanded for attempting to purchase them for us. We were willing to pay for the Keytruda ourselves if his office would administer, however, this was no longer an option. Instead, we had to pay for the drug out of pocket and travel to another state to be infused two times. Since blanket approval of Keytruda for DNA mismatch repair recently, my tissue is being tested to determine if I am a candidate so that insurance may cover the next infusions. It is shameful that we must jump through hoops taking drugs that are less effective to obtain the drugs we truly need for our condition. I have just taken my 2nd infusion of immunotherapy and have experienced only marked fatigue as a result. I feel deep compassion for those like Rene who have endured harsh chemotherapy drugs. I am back at work for the first time in 4 months, and will be continuing to receive infusions as long as possible, with my next scan to come in 8 weeks. My first scan showed evidence of necrosis of the primary tumor and that it is being "eaten away" by my immune system. We hope and pray for good things to follow.