Brian Pochel’s Story November 23, 1967 – September 3, 2011

Vital Statistics

Brian Pochel was diagnosed with locally advanced, adenocarcinoma in the head of the pancreas in February 2006, at the age of 38.

Background

Brian lived in Cottage Grove, Wisconsin with his wife, Sheryl, and their four children.

Pancreatic cancer questions answered by Brian Pochel:

Diagnosis Locally advanced, adenocarcinoma in the head of the pancreas. The initial prognosis was “a year, probably not two”. What took you to the doctor in the first place I just didn’t feel well after I ate. I had a lot of indigestion and diarrhea. I was losing weight rapidly. How you were told, how you told loved ones My wife and I had friends with us at the appointment. We thought we were there to discuss a whipple, but were told that it was not possible and would probably never be possible. When/how you learned “the statistics” We learned the statistics before we had an official diagnosis. Initially because of my age the Gastroenterologist thought I had pancreatitus. He said that there was a possibility that there was a tumor, but he really didn’t think so. It was a few days later when he got my CA 19-9 back that he talked about the fact that this was probably pancreatic cancer. It was that afternoon that I started to research the disease and found the statistics. I don’t think Sheryl and I slept at all that night. Your initial response to diagnosis, and that of your family/friends Fear, despair, anger, hopeless. What facility; what primary doctors I am treated at the UW Hospital in Madison, WI. My oncologist is Dan Mulkerin and I have the utmost respect for him. My surgeons were Sharon Weber (whipple), Mustafa Baskaya (brain) and Greg Hartig (neck). Radiation oncolgists were Mark Ritter (abdomen) and Minesh Mehta (brain) All of my doctors have been nothing short of fantastic. Surgery November 2006, 8 months after my diagnosis, I had the whipple. I was told that I would never make it to that point, they had never seen a case as “severe” as mine make it to surgery. At the time they did my whipple they found no cancer, none. I was NED for 15 months. Clinical Trials None Chemo/Radiation After I was diagnosed I had 6 weeks of radiation with xeloda and oxiliplatin. This combination did give me some shrinkage, but not enough to make it to surgery, so several weeks after I finished that regimen I began doing GTX (Gemzar, Taxotere and Xeloda). I did this treatment for 5 cycles (15 weeks). Then I had my whipple. Experience (physical, emotional) I was extremely fatigued, but I did manage to work part time. I went back to work (I am a Chiropractor) 2 months following my whipple. Emotionally it is still hard. Dietary – Exercise Gaining weight is hard and I need to make sure to eat regularly or I lose weight quickly. Alternative Therapies I take glyconutrients on a daily basis. Rediagnosis In March of 2008, after being NED for 15 months, my routine CT found cancer in my lung. One small spot that had been there but grew from 5mm to 8mm. I was referred to a thoracic surgeon who ordered a PET scan. The PET found that not only was there the spot in my lung but also some lymph nodes under my left clavicle that were cancerous. This was confirmed by biopsy. We chose not to treat it immediately but to watch and see what it did. The next scan however through us for a bigger loop, a tumor in my brain was found. Days later I had surgery to remove it. This was in May 2008. I again had to have radiation but this time it was to my brain. I also participated in a study with a parp inhibitor (it was specific for the brain). After I completed that I again started GTX to try to get rid of the cancer that was in my lung and in my neck. The GTX worked again, but the cancer changed and a new lymph node showed up on a scan in Nov 2008. My oncologist again recommended surgery instead of trying a different chemo regimen. In December 2008 I had surgery again to remove some cancerous lymph nodes in my neck. Twenty-three were removed and two were cancerous. At my last scan, which was in February 2009, everything looked good except there is a lymph node under the clavicle that is starting to show up again. However, at this time my oncologist does not want to start treating it. I am just now starting to feel better and I have been off of chemo since October. He does not want to put me on chemo any sooner than he has to. Experience Extreme fatigue, a lot of weight loss which has been hard to reverse, but I am slowly gaining. Emotionally it is very hard. I have a wife who loves me and four young kids (at this point they are 9, 7 ,5, and 4). I do not want to leave them. Medical Team My medical team has been fantastic. They were very aggressive and treated my cancer as a statistic of one. Primary Caregiver My wife Sheryl has been by my side for every appointment. She stayed with me in the hospital when I had my brain surgery and would not leave my side. She has been a strong advocate for me and has done endless research in an effort to help me survive. She is so strong and I admire and love her. Other Family Our kids have really helped me pull through this. When I was first diagnosed our youngest two were 2 and 10 months. I knew that they would never remember me. Our youngest daughter would come up to me and grab my face and make me kiss her. She didn’t care that I felt awful, she just wanted me to know that she loved me. Our kids have given me the strength to fight and the strongest will to live. I love them each so much. My parents and in-laws have been a tremendous support. The parents that are in this area help us with the kids and my parents that are not here have come for each and every big event and have stayed for weeks at a time which was so helpful to us. We are so lucky to have such a great support system. Friends, Neighbors, Strangers Awesome. Neighbors helped with the yard work and with the kids. Friends and strangers brought us meals. We have two wonderful women who were strangers but are now friends doing our laundry (which is a HUGE job for a family of 6!) Support Groups We attend a cancer support group that is in our little village. Online Resources Johns Hopkins Pancreas chat board, PanCAN and Pancreatica. Books There’s No Place Like Hope by Vicki Giraard Attitudes It helps to have a good one! What your doctor would say My doctors would say that somehow my cancer is different than others. It is adenocarcinoma, the aggressive type, but somehow mine is different. What you say I don’t know why. I have fought hard to still be here. One of the things I did differently than others is to take a nutritional supplement of glyconutrients. I don’t know if it made any difference, but I am not going to stop taking it and find out! Importance of hope Hope is something that is NOT handed out to people with pancreatic cancer but it is so essential. No matter what you are hoping for, there needs to be hope somewhere. Advice to other patients Gather information, ask questions of your Doctors until you understand or are satisfied with the answer. If something doesn’t feel right, then it probably isn’t. Get second opinions. Be aggressive. Advice to primary caregivers Know that there are resources out there to help you cope with the stress. Support groups, chat boards, organizations like Pancreatica and the Pancreatic Cancer Action Network. There are people who have been where you are and they are willing to talk to you, utilize them! Advice to well-meaning others Don’t always ask how I’m doing. Sometimes I just want to be me and not me with cancer. I appreciate your concern, but I do like to go through my day and not think about cancer. Thoughts I can say that I appreciate my wife and kids a lot more. I make sure to spend a lot of time with them. We’ve always been close, but this has made us closer. I take time to do the things that I want to do. I practice random acts of kindness for others. I try to plan for the future, that is still hard, but I continue to try. I hate that I have this cancer, but it has given me some gifts too and I see things in a different way than I did before. Dr. Brian Pochel of Cottage Grove, passed away on Saturday, September 3, 2011, at the age of 43, after living 5-1/2 years with pancreatic cancer.