Kyle's Story

Kyle, DSRCT Survivor

Kyle was 26 when he was diagnosed with desmoplastic small round cell tumor at the abdomen. His treatments have included chemotherapy, surgery, HIPEC chemotherapy and radiation therapy.

Life before cancer was great. I was working full time as a helicopter mechanic. I got married in June 2010, and my wife and I had a baby girl in December 2011. During the summer of 2011, I worked in Alaska for five months and returned home in September. While in Alaska, I pulled a muscle in my shoulder and was under the care of an orthopedic doctor. I was prescribed pain medicine to help control the pain and began physical therapy. In February 2012, I was very uncomfortable while driving home after a weekend visit to my grandparents' house. I was having to urinate more frequently and was having some bowel issues. I had also been feeling something in my lower abdomen for about two weeks. My wife and I thought that I had a hernia or a blocked bowel; we knew something was going on.

When we got home from the trip, my wife decided that we should go to our local ER to try to fix whatever was causing me so much discomfort. We knew that if we went to my local doctor, I would be sent all over for testing and we would not know what was going on for several days. We went to one hospital and walked up to the ER and something just did not feel right, so we decided to leave and go to the other hospital in town. Once we got to that hospital, I was called to the back and doctors began trying to figure out what was going on. The doctors could feel something in my abdomen so they ordered an x-ray but could not see anything, so they ordered a CT scan. They could see something on the scan but could not tell what it was, so they ordered a CT scan with contrast and after that scan, our worst nightmare was confirmed. Several masses were found in my abdomen and the ER doctor told me that he saw 2 masses in my abdomen and those 2 masses should not be there and he was 99% sure that I had cancer.

I was admitted to the hospital that morning, after an all-night visit to the ER. The next day, a biopsy was done, I had a colonoscopy because my largest tumor was wrapped around my rectum, and I had an Upper GI to try to find out exactly where all the cancer was. My nurse came in and asked if there was any specific oncologist that we wanted to see, but we had no idea so we asked her to choose whom she thought was best. I remember so clearly, when he came in to see me, he introduced himself and said he was the "cancer doctor." Things just seemed so surreal. Once I was released from the hospital, we had to meet with my "cancer doctor" the following Friday. He told me that I had Ewing's Sarcoma-PNET and that he wasn't very familiar with it, so he thought it was best that we went to MD Anderson. After five long weeks of waiting to get into the Sarcoma Center at MD Anderson, once there, my doctor confirmed that I did not have Ewing's Sarcoma but what I had was much more rare, DSRCT.

Treatment

Kyle with his chemo nurse, JonathanI went through seven cycles of intense inpatient chemotherapy. Under the instructions of my doctor at MD Anderson, I was able to do all of my treatments at my local hospital. My first round of chemo was horrible! I lost 11 pounds and was severely dehydrated. After the first round, I learned what to expect and how to take precautions to get through chemo better. Rounds 2 and 3 went very well and I bounced back rather quickly. Rounds 4-6 were a little rough. My tumors were all responding very well to chemo. My largest tumor at diagnosis was 16 cm and with each round, it was getting smaller and smaller. I had scans after every two rounds of chemo and after my sixth round, I was told everything was still responding well and that I would go home to do one more cycle and plan on having surgery within 4-6 weeks.

I went in to start my seventh round but my platelet count was too low. I knew that my surgery date was being planned so I called my surgeon to let them know that I was postponed a bit due to low platelets and for them to consider that in setting my surgery date. During that phone call, I was told that in my last set of scans it appeared that my cancer had spread to my pelvic bone and that I may no longer qualify for surgery. We came to a halt! I was ordered to travel to MD Anderson to have a PET scan done to check the metabolic activity of the pelvic spot and it showed none, so I was ordered to have the spot biopsied. The biopsy report came back that the pelvic spot was not cancerous, thank God, so we were back on track. I completed my seventh round of chemo.

I recently had surgery on October 11th with Dr. Hayes-Jordan at MD Anderson. Before surgery, I was told that I was likely going to have a colostomy placed if the doctor could not avoid taking my rectum. She was going to have to take a piece of my pancreas and my bladder. On the morning of my surgery, I had to sign consents to have my ureters re-routed because the largest tumor was affecting them as well. I was marked for colostomy placement and signed many consents. I had the best case scenario with all of those factors - the only organs affected was the removal of my spleen and a small piece of my colon. I came out with no colostomy, ureters still in normal placement, and no resection of my pancreas. Dr. Hayes-Jordan removed over 400 tumors from my abdomen in a surgery that lasted nearly 15 hours. After the tumor removal, I underwent HIPEC and then was closed back up. Currently, I am recovering from surgery and I will begin radiation in about 3 weeks.

Recovery

About two weeks after each round of chemo, I began to feel good again. After the first round, I felt so much pressure relief in my abdomen and I felt better than I had in the month before I found out I had cancer. My surgery went well and I am recovering very well. While in the hospital, I lost a good bit of weight and have lost more since being discharged. I am working hard to gain weight, but it is not easy as my body is burning lots of calories working to heal from surgery.

I am experiencing some numbness/tingling in my left foot and my surgeon believed that it was nerve damage, so I had a consult with a neurologist at MD Anderson and nerve damage was ruled out. What the neurologist believes is going on is due to the weight loss and will recover on its own once I gain some weight. I will begin full abdominal radiation with small doses to my liver, kidneys, and to the benign spot that was found on my pelvic bone on Monday, November 26th. I will do radiation Monday-Friday for 4 weeks with my last radiation treatment being December 21st. I will also begin maintenance chemo either during or right after radiation and will remain on maintenance chemo for several months.

Kyle and his little girl, AubrieLife Now

Currently, I am still employed with my company but not working. Hopefully, I can return to work sometime in the beginning of next year. While recovering, I am enjoying my family and taking things very easy and trying to build my strength back up. Everything throughout my treatment has been right on track and I have not had any problems. I look at my cancer experience as a lesson in life. I look at life a whole lot differently and I appreciate the small things. I know that God has me on this journey for a reason and the ultimate plan for my life lies in His hands.

Thoughts and Hints for New Patients

Take things one day at a time and always know that there is someone who has things a lot worse than you do. Have hope and stay focused on getting through treatment because, though it may not seem like it, there IS light at the end of the tunnel.

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LaRae Hattie 18/02/2014 05:09 pm
I'm happy for you Kyle. I hope you live many more years for the sake of your family. God Bless.

My nephew, Dameian, was diagnosed with DSRCT in 2009, battled it for a little over a year, then 8/20/09 he passed on at 9 yrs old. I wish we had known about this sarcoma center as well. Best wishes to you! stay strong!
JoeAnns Mom 21/01/2014 03:46 pm
Amazn Story! Thank you for sharing...
May your journey stay strong & postive. God Bless You!

My 18yr old daughter Joeann was also diagnosed with (DSRCT)back in August 2010..however lost her battle on February 2011. I wish to God I would hav known more about Sarcoma Center MD Anderson. Maybe they could have saved my babygirl from this horrific cancer. =(
Mary 15/11/2012 12:06 pm
Thanks so much for sharing your story, Kyle! The HIPEC treatment sounds promising - I hope it has really done the trick for you. It's amazing how much treatment you're going through, and I'm so glad it's going well. Wishing you lots of wonderful experiences with your wife and little girl. :)

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