Survivor of Rare Lymphoma Looks Forward to the Future
Editor's Note: Phillip Koubik was diagnosed with a rare form of lymphoma in 2007. He was treated at the University of Maryland Marlene and Stewart Greenebaum Cancer Center (UMGCC), where he received a stem cell transplant in 2009. He has been in remission since October 2009, and recently posted the following comment on UMGCC's Facebook page: "UMGCC is absolutely the best. It is because of their existence that I am here today and a cancer survivor. I can never truly express what all the doctors, nurses, administration personnel and everyone else there has meant to me. In my opinion, they set the bar for what health care professionals should be!" He agreed to share his story here.
All my life I have considered myself a survivor, and facing cancer is no different. When I was first diagnosed with NK/T-cell lymphoma, and for months afterwards, I had a hard time admitting that I had cancer. This was not because I didn't believe I had cancer or had trouble processing having such a disease. It was because, as I was going through my treatments, I would see other patients who looked like they were struggling through their treatments while I felt fine. I thought it a disservice to all those who had it worse than I did. It wasn't until I had to face a stem cell transplant that I was finally able to admit that I had gone through enough to be considered a cancer patient. The entire time, I have only really ever felt as if cancer was just one more thing I had to go through and that it would not be the end of me. I guess I've always treated cancer with the same "never fail" philosophy I try to apply to the rest of my life.
It all started as my nasal passages started clogging and swelling, so I thought I had allergies. I went to an allergist who tested me and gave me some steroids to reduce the swelling. This was in fall 2007; the swelling went down and I forgot all about it. Then, right before Christmas of that year, the swelling started coming back, and people around me started to notice a foul odor when I would be around them. This odor was emanating from my nose and it just kept getting worse. Finally, my wife forced me to go see a doctor who sent me to the emergency room, as he thought I had an abscess inside the nasal cavity.
The doctors at the ER could not determine what the problem was and sent me to an ear, nose and throat specialist. The ENT doctor, whom I will forever be grateful for, said after examining me that she was pretty sure it was cancer. She did a surgical biopsy and it turned out to be a rare form of cancer called NK/T-cell lymphoma. I was started on CHOP, a chemotherapy treatment, which promptly landed me in the hospital for a week. After I went home, doctors decided to start me on radiation therapy. I went through six weeks of radiation therapy five times a week.
After I finished the radiation treatment, I saw two different medical oncologists who recommended that I enroll in a research study to try a drug that had never been used to treat any type of lymphoma. In both cases, they explained that there was not a treatment regimen that was likely to work for me, but that by being in the study I may be able to help someone else someday, if not myself.
My mother arranged for me to get a third opinion with a doctor at the University of Maryland Greenebaum Cancer Center. My first meeting with Dr. Ann Zimrin at UMGCC could not have been any more different! She told me that, while there was no known treatment regimen that had been shown to be greatly effective for this type of cancer, there was no date stamped on me that said I was going to die. She said, "You are young and healthy; there is always hope." She gave us that hope when we felt none, and for that I will be forever indebted to her. She said she would do everything possible to try to fight this disease and help me survive it. She did say that I would likely need a stem cell transplant for long term survival.
Dr. Zimrin started me on a regimen that she had heard was giving good results for my type of cancer overseas. By this time, the growth in my nasal cavity had disappeared thanks to the radiation; but now I had a growth on my neck and a spot near my heart. This new treatment regimen made the spot near my heart disappear and the growth on my neck reduce in size by half. She then arranged for me to see her colleague in the Bone Marrow Transplant Program at UMGCC, Dr. Aaron Rapoport, who agreed that I would need a transplant for long term survival.
So, I prepared for the transplant process and received my transplant on January 14, 2009. I have now been in remission since October, 2009, and aside from dealing with some lingering issues stemming from my treatments, I am doing great. I have even been able to join a pool league, which is something I've always wanted to do.
Bottom line: there is no "date stamp" on us saying when we are going to die. My advice is to always keep up hope, because you never know what's around the corner.