{"id":5658,"date":"2019-03-22T17:31:01","date_gmt":"2019-03-22T21:31:01","guid":{"rendered":"https:\/\/www.ackc.org\/?page_id=5658"},"modified":"2019-03-23T20:58:54","modified_gmt":"2019-03-24T00:58:54","slug":"patient-stories","status":"publish","type":"page","link":"https:\/\/www.ackc.org\/jayedit\/patient-stories\/","title":{"rendered":"Patient Stories"},"content":{"rendered":"

Welcome to the first of our ACKC Patient Stories <\/strong>series, where kidney cancer patients, and their caregivers, share their personal experiences. We encourage your comments, and if you have a story to share, please contact us<\/a>.<\/p>\n

\"\"<\/p>\n

Shaun T.<\/h2>\n

February 2007, I was\u00a0a\u00a0happy and healthy\u00a051-year-old\u00a0living with my wife Mary in New England.\u00a0I\u00a0played\u00a0golf several times per week for exercise and always carried my bag. However, in\u00a0the fall\u00a0of\u00a02006 I thought I pulled a groin muscle while golfing. I remember the exact moment like it was\u00a0yesterday. It didn’t get better and seemed to transition to my right hip. For the next\u00a0six\u00a0months my former\u00a0Primary Care Physician (PCP) treated me for bursitis of the hip with mega doses of Aleve (note: bad for kidneys). Since I was getting worse, not better,\u00a0Mary insisted I go to another doctor. By then the pain was progressing up my right side and I was now strapping a heating pad to my side at work and at home. During the first\u00a0appointment with my new PCP they did a complete physical and ordered an ultrasound to check my gallbladder. At 3 pm,\u00a0Mary received a call asking us to come back to see the doctor that afternoon. They said to take our time, they would wait for us and to drive carefully because it was snowing.<\/p>\n

After she called my office, I left work, picked her up and we drove to the doctor\u2019s office.\u00a0When we\u00a0arrived, the doctor was waiting for us in an\u00a0examination room. She was\u00a0a long-time friend of the family and\u00a0visibly upset. I instantly thought \u201cThis can\u2019t be good.\u201d She wasted no time and more or less blurted out \u201cYou have cancer!\u201d\u00a0Upon\u00a0hearing her words, I\u00a0went blank and tried to comprehend\u00a0what had just\u00a0happened. I\u00a0walked in thinking I may need to miss a few weeks of work for gallbladder surgery, but this was life altering. Within a nanosecond everything we planned for and dreamed of was shattered by three simple words.\u00a0Fortunately, Mary\u00a0stayed focused and\u00a0learned that the ultrasound had identified many soft tissue masses. The doctor was sure it was cancer, but didn\u2019t know what type because it was widely spread throughout lung, liver, lymph nodes and both kidneys.<\/p>\n

Thus\u00a0began a marathon of imaging, labs and a\u00a0biopsy\u00a0to determine the primary cancer.\u00a0Eventually we learned it was RCC. Before then I\u2019d never heard of Renal Cell Carcinoma\u00a0nor\u00a0of\u00a0kidney cancer. I was referred\u00a0to a local general oncologist who said it was a rare cancer\u00a0and\u00a0he only saw a couple of cases each year. He said I was Stage IV, inoperable due to extent of spread including bones and this cancer did not respond to radiation or chemotherapy.\u00a0He told us that\u00a0I was terminal and suggested I spend time with my family and get my affairs in order. We were shocked and numb. After a couple of\u00a0days\u00a0I asked him for\u00a0a referral to\u00a0the Dana-Farber Cancer Institute\u00a0in Boston. At my first appointment there, we met with\u00a0a\u00a0RCC specialist. He\u00a0asked what I knew\u00a0about my situation. I repeated what the first oncologist said to us and that his nurse told my insurance company 12-18 months of survival. The specialist listened carefully then\u00a0took me by my\u00a0shoulders, looked me straight in the eyes and said \u201cShaun, I\u2019ve been a doctor a long time, examined countless patients and NEVER have I found an expiration date stamped on the bottom of a foot.\u201d\u00a0That got my attention.<\/p>\n

He\u00a0continued to calmly explain that much of what the first\u00a0oncologist\u00a0said would be true, if we were having the conversation a year earlier. He spoke\u00a0of recent\u00a0advances in radiation and two new \u201ctargeted\u201d therapy drugs for RCC. He said one of them may help stabilize my cancer or even reduce my tumor volume, but neither would cure me. There was no cure then and there still isn\u2019t. As he explained his plan, he also introduced the concept of living with cancer as a chronic illness. That was a completely new idea, which I hadn\u2019t heard of before. The contrast between thinking my death was imminent one moment and considering the possibility of a future in the next was astounding! For 2\u00bd\u00a0hours\u00a0this amazing man spoke in very plain terms laying out back-up plans and patiently answering every question we could think of.\u00a0He gave it to us\u00a0straight \u2014\u00a0that I was in desperate need of stability ASAP. He thought he could get that or more. I believed him and felt a strong bond almost instantly. When\u00a0Mary and I\u00a0left for the long drive home, we carried with us a glimmer of hope. That\u2019s exactly what I needed and all\u00a0I wanted: a chance to fight.\u00a0I had found a\u00a0like-minded\u00a0man who was now the leader of my team.<\/p>\n

We started with 15 days of very high dose IMRT radiation to\u00a0mets\u00a0on my lung, iliac bone, and the 5th<\/sup>\u00a0right rear rib, which was already destroyed. We also radiated two spinal\u00a0mets\u00a0at T4 and T6, which were in contact with the spinal cord and threatening\u00a0paralysis. After the radiation I began taking 50mg\u00a0of\u00a0Sutent\u00a0on the standard cycle of 4 weeks on and 2 weeks off. Within the first\u00a0six\u00a0months it had reduced\u00a0my\u00a0tumor volume by nearly 50%. There\u00a0was then\u00a0a period of stability. After about three years on this cycle, the toxicity was severely affecting my labs and QOL.\u00a0So\u00a0we made the first of many adjustments to the dose and cycle. The goal was to keep me on\u00a0Sutent\u00a0as long as it was working for the majority of my tumor burden. In 2014,\u00a0two new spinal\u00a0mets\u00a0appeared, and\u00a0they were treated with SBRT (an extremely precise radiation technique commonly referred to as radio-surgery) and\u00a0Vertbroplasty\u00a0(a minimally invasive procedure using imaging guidance injecting bone cement to repair fractured or damaged vertebrae). My\u00a0doctor\u00a0didn\u2019t consider\u00a0that\u00a0new bone\u00a0mets\u00a0signaled\u00a0Sutent\u2019s\u00a0failing\u00a0me,\u00a0because the majority of my tumor burden was well controlled.\u00a0So\u00a0we stayed with it. There was then\u00a0more stability until 2017,\u00a0when\u00a0one\u00a0liver met\u00a0doubled in size every\u00a0three\u00a0months. A decision was made to use cryoablation (a method of repeated freezing and thawing lesions) in an attempt to kill the tumor. It was in a very difficult location of the liver, but the highly skilled interventional radiologist\u00a0at\u00a0Dana-Farber\/BWH\u00a0used four cryoprobes to reach it from different angles\u00a0and get great margins.\u00a0In 2018,\u00a0a couple of kidney tumors that had previously shrunk and been stable for years started growing slowly. Once again the same specialist used cryoablation\u00a0to destroyed\u00a0them.<\/p>\n

On February 22, 2019 we celebrated my 12th\u00a0cancerversary\u00a0of living with Stage IV cancer as a chronic\u00a0illness! I\u2019ve also been on\u00a0Sutent\u00a0for more than 12 years now, which is almost unheard of in the world of RCC.<\/p>\n

On that snowy Thursday afternoon in 2007, I thought my life was over. Never in my wildest imagination did I dare believe I\u2019d still be alive today. But I am and have been\u00a0blessed to have had my wife at my side every step of the way. She never wavered during the rough times and showed me how to celebrate the joyous ones. Since my diagnosis we have seen our three kids become caring,\u00a0responsible adults and unique individuals. They make us so proud. I try to make them\u00a0just as proud by\u00a0how I deal with the adversity connected to living with cancer. They\u2019ve also presented us with six absolutely beautiful grandchildren! Never in my wildest dreams did I think I\u2019d see even one grandchild born or Mary explode with absolute bliss as she held each one for the first time. She continues to simply radiate whenever she\u2019s around them. It gives me great comfort to know my disease has not destroyed her ability to experience happiness.\u00a0I try very\u00a0hard to imprint memories with the wee ones as their crazy grandfather who will take them\u00a0on wild adventures, toss around or kick a ball whenever they ask, go sledding, eagerly play in the surf of Cape\u00a0Cod or just act like a kid again\u00a0whenever my treatment\u00a0allows. I want\u00a0them to never forget that I love\u00a0them with every fiber of my being. I hope that someday when they\u2019re older and know my whole story, it will help them persevere when faced with life\u2019s challenges. That is the legacy I want\u00a0to leave them when my time is up.<\/p>\n

Without research none of the above would be possible and I would not be alive. The drug I take and the other treatments I listed are the result of research, clinical trials and fine tuning. Since my diagnosis, ongoing research has resulted is a total of twelve FDA approved drugs being available for RCC patients now. But there\u2019s a need for more\u00a0and\u00a0less\u00a0toxic\u00a0ones. We still don\u2019t have the cure either, but I am more confident than ever that recent research advances are bringing us much closer\u00a0to that day. That\u2019s why it is so important to support cancer research financially, by participating in one of the hundreds of clinical trials focused on RCC or\u00a0by donating your time and talent.<\/p>\n","protected":false},"excerpt":{"rendered":"

Welcome to the first of our ACKC Patient Stories series, where kidney cancer patients, and their caregivers, share their personal experiences. We encourage your comments, and if you have a story to share, please contact us. Shaun T. February 2007, I was\u00a0a\u00a0happy and healthy\u00a051-year-old\u00a0living with my wife Mary in New England.\u00a0I\u00a0played\u00a0golf several times per week for exercise and always carried my bag. However, in\u00a0the fall\u00a0of\u00a02006 I thought I pulled a groin muscle while golfing. I… More \u2192<\/a><\/p>\n","protected":false},"author":8,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"class_list":["post-5658","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/pages\/5658","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/users\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/comments?post=5658"}],"version-history":[{"count":24,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/pages\/5658\/revisions"}],"predecessor-version":[{"id":5689,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/pages\/5658\/revisions\/5689"}],"wp:attachment":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/media?parent=5658"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}