My Cancer Journey
How do I summarize a six-year long lymphoma journey with as many stomach-twisting turns as a rollercoaster? While at many times painful, the journey has also surprised me with its beauty and its gifts. So, as not to bore you, below I summarize the basic facts of my illness and treatment. If you want a more in-depth story, click through the pages on the blog menu. You can click here to find my latest cancer news. In addition, watch for updates as I post about what I have learned along the way.
Diagnosis 6 years ago at age 24
I was diagnosed in May 2012 with non-Hodgkin’s lymphoma, a type of blood cancer. There are over sixty types of lymphoma. My specific type of non-Hodgkin’s lymphoma is primary mediastinal diffuse large-B cell lymphoma, usually abbreviated as PMBCL. Basically, that name means that the lymphoma’s primary site in my body is the center chest, and the type of cancer cell is the B-cell lymphocytes (white blood cells).
Six months of worsening illness preceded my diagnosis. I had low-grade fevers, night sweats, and weight loss, all classic symptoms of lymphoma (and many other cancers). In addition, because of the location of the lymphoma mass (center chest and left lung), I had a severe cough, shortness of breath, shoulder and neck pain, and a high heart rate. By the time of diagnosis, the lymphoma mass was the size of an enlarged softball, destroying my left lung, cutting off my air, and stressing my heart. The medical field moved very slowly through it all. I was originally misdiagnosed with pneumonia and then small cell carcinoma (lung cancer). By the time the medical field gave me the correct diagnosis and started treatment, I was dying.
The correct diagnosis and the correct chemotherapy turned that around very quickly. Lymphoma normally responds very well to treatment, and mine did. I did six months of a chemotherapy called R-CHOP in 2012. The chemo had very little negative effects on me. I handled it well, working full-time through most of my treatments. The chemo did not put me into remission but significantly decreased the size of the mass. So I settled into a watch and wait approach for the next year, with checkups and CT scans every three months.
2013 & 2014
A slight increase in tumor size in September 2013 sent me on a quest for a strict diet and supplement regimen. That held the lymphoma at bay for another six months until a CT scan in May 2014 revealed additional tumor growth. I started R-ICE chemo in June followed by the high-dose chemo BEAM in August and an autologous stem cell transplant on August 21, 2014. That, in turn, was followed by twenty-three doses of radiation in October and November.
My remission after the autologous transplant lasted only five brief months. In February 2015, the lymphoma returned with a vengeance, causing coughing and illness much like the months before diagnosis in 2012. I began more chemo, GVD-R, a different type yet. However, this chemo was not aiming at cure like the previous ones had. This chemo would only hold the lymphoma at bay for some months. My options for treatment were dwindling. It appeared more and more likely this cancer would kill me.
In October 2015 I was forced to stop treatment, as I had reached the toxic dose limit for the one chemo drug I was on. In addition, I was diagnosed that fall with restrictive lung disease. My lungs operate at about 55% capacity, due to lung scarring from the lymphoma, chemo, and radiation.
In January 2016, after a CT scan indicated another relapse, I started an experimental immunotherapy called Nivolumab. I was delighted when it worked well to suppress the lymphoma and didn’t cause me any side effects. But once again, the cancer proved its stubbornness by yet another relapse in September.
I started another chemo regimen, ESHAP, in September 2016, once again, not a cure, only a delaying tactic. But it did get me well enough to consider one last treatment option: an allogeneic stem cell transplant using donor cells from a family member. My siblings were tested, and my oldest sister was a perfect match! On February 13, 2017, I was admitted to the hospital for a three-week hospital stay for Bu-Mide high-dose chemo followed by an allogeneic stem cell transplant on February 21, 2017, my “new birthday.” The transplant was successful in that the donor stem cells engrafted in my bone marrow, and my blood cell counts recovered quickly.
In the words of one of my doctors, I went through purgatory during the following three months. It felt like I had everything wrong with me I possibly could: C. Diff, extreme mouth sores, constant nausea, croup, JC/BK virus, ocular GVHD, hearing difficulties, and pneumonia. For a while, I was nearly blind and deaf. I was in and out of the hospital during the 3 months following transplant. There were times that I wondered why I had ever agreed to do an allogeneic transplant. An allo transplant is largely a gamble: 30% of patients survive. The rest die either from a return of the cancer or complications. For a bit, it looked iffy for me. But I pulled through.
The purgatory is behind me. The last I was inpatient at Hershey Medical Center in Pennsylvania was August 2017. I’ve not had any infections or illnesses since then. I get an immunoglobulin once a month via IV to support my donor immune system. Immunosuppression drugs control my sister’s immune system that now resides in my body so it doesn’t go on the warpath and destroy my tissues. I successfully passed the year mark of my transplant on Feb. 21, 2018, a milestone that not nearly all patients reach.
The biggest side effects I deal with from transplant are low energy levels, muscle weakness, fatigue, and subpar lungs. I was placed on supplemental oxygen following my pneumonia in May 2017. We were expecting it to be a temporary need, but it’s not. I am still on supplemental oxygen because my lung capacity is too compromised to maintain sufficient blood oxygen levels. I’ve become so used to it, I hardly think about it most days. Some days, it is frustrating, but I’m able to enjoy life anyway.
Sadly, the transplant failed officially as of Sept. 27, 2017, seven months after transplant. In other words, the transplant was meant to eradicate/cure my cancer once and for all. It didn’t. A PET scan shows its back. Again. In the same place. Center chest.
We weren’t sure we could find a drug that works. I’ve had so much chemo that the lymphoma barely responds to it anymore. We decided to try Brentuximab, newer immunotherapy drug that is not normally used for my type of lymphoma. However, we thought it might at least hold the cancer at bay. When a follow up CT scan on Jan. 27, 2018, showed 50% reduction of the lymphoma mass, I was on cloud 9. We did not expect that at all, so I’m thanking God for His miracles to me.
I now receive a Brentuximab treatment every 3 weeks. I’ve had 7 so far, with a total of 11 more planned if I can tolerate that many. So far, I have few side effects from it. All in all, I have a relatively good life considering the medical trauma my body has been through the past 6 years. Am I glad I did the allo transplant even if it wasn’t totally successful? Yes, because it bought me more time to find something that might work permanently. I still love life, still live with purpose and meaning, still hope and dream and plan. To keep up with my cancer journey, go to the pages below to read up on where I’ve been and subscribe to my blog to be notified any time I post an update.
Always and forever, God is good!