One Saturday night in December 2013, I experienced tremendous pain in my stomach, which worsened as time passed. I went to the hospital and the doctors found that my appendix had ruptured. They also found a number of large lymph nodes and removed them for a biopsy. After the biopsy, my wife and I met with the doctor and the doctor informed us that I had mantle cell lymphoma (MCL). At first, I was stunned. I have always been healthy, never smoked, and to some extent I was athletic, at least athletic enough to play hockey in my late 30s.
After the diagnosis, my first doctor suggested that I go with a standard therapy, which was R-CHOP. R-CHOP is a immuno chemotherapy with the monoclonal antibody rituximab combined with the chemotherapy agents cyclophosphamide, doxorubicin, vincristine, and prednisone. After I finished one round of R-CHOP, I decided to switch doctors. My second doctor suggested that I go for a stronger therapy, which would help me achieve remission. I was in my late 50s and was healthy enough for stronger therapy. I went for R-DHAP, which is another chemotherapy with the monoclonal antibody rituximab combined with dexamethasone, high-dose Ara-C-cytarabine, and platinol (cisplatin). The treatment was very rough on me. I experienced a psychiatric adverse drug reaction to this therapy, and the beginnings of massive organ failure. This adverse reaction forced us to stop DHAP therapy, and return to R-CHOP. I proceeded with 4 rounds of R-CHOP, followed by a stem-cell transplant.
During this difficult phase of my life, my wife and my cousin were extremely helpful. My cousin had a different type of lymphoma, so it was comforting to be able to talk to him. Throughout the course of my illness, my wife stood by my side as my strongest supporter.
Everything went smoothly until August 2016. A PET scan detected tiny deposits of MCL, and my doctors told me that I had relapsed. They suggested not rushing with the next therapy, and to wait until lymphoma symptoms were observed. I am scheduled to have another PET scan in January 2017. Honestly, the news of my relapse did not affect me much. After going through all the chemotherapy regimens and the transplant, it kind of gives you the strength to fight harder. At that stage, you accept the reality and are ready to face it. During my relapse, I did not have many questions to ask, except for those regarding the side effects. The options after relapse include an autologous transplantation or an allogeneic stem-cell transplantation, or enrolling in a chimeric antigen receptors-T cells (CAR-T) clinical trial. I am going to wait to choose a treatment option until I have all of the information I need to make the best decision for me and am sure of which treatment I want to have. It is important for me to choose the therapy that is highly effective in treating the disease, and also has the fewest side effects that will impact my life.
Mantle cell lymphoma has changed my life. I have never felt so close to my wife before. The bond with my wife has become extremely strong. We talk a lot more now. If it wasn’t for my wife, I wouldn’t be alive right now. She has saved my life as much as all the medicine, doctors, and nurses have. She once said to me ‘It’s an honor to do it. It is a form of a gift from God to be able to do this for you.” I am very blessed to have married her.
I don’t exactly remember how we discovered the Lymphoma Research Foundation (LRF), but it is easy to find and I recommend it even for newly diagnosed cancer patients. Because I am a university professor and my wife is a librarian, we both are inclined towards reading so it is not surprising that we came across LRF. After we found this organization, we have become regular readers of all the articles that get posted. We really like to read other people’s experiences. Reading each other’s stories gives you hope that you are not alone in this situation and gives you courage. It is truly a wonderful platform for MCL patients.
My advice to newly diagnosed patients is that you can do it! MCL can be difficult, no doubt about it. You and your family are scared, but there are a lot of reasons to be hopeful. There are a lot of new treatments being studied and new options for both newly diagnosed and relapsed patients. The main thing is that you can do this and you can survive.
For anybody who has relapsed, my suggestion is that this is your new reality and you cannot give up on this disease. Personally, I like being around. I have to stay alive for my wife.