This is meant to answer any questions people may have about my cancer and Hodgkin lymphoma (HL). It’s not meant to suggest that my situation or knowledge is commonplace for all cancer survivors, nor is it to be used as a diagnosis tool for cancer, blood cancer, or, more specifically, lymphomas. There are a lot of great websites with a lot of information by the American Cancer Society, the CDC, and the Leukemia and Lymphoma Society, in addition to NHS in the UK and Cancer Australia, to mention a few. But online information should never replace a medical examination. If you’re not feeling well, see a doctor. If you don’t like what a doctor has to say, get a second opinion.
BASICS
NOT A “GOOD CANCER”
SYMPTOMS
For a long time, I had been suffering from repetitive colds. In the winters of 2006/07, 2007/08, 2009/10, 2010/11, 2011/12, I suffered periodic illnesses. I would get head colds that might or might not develop into sinus infections, and would recover only to get sick again about four to six weeks later. When I was living in Los Angeles, I got bronchitis three times. If I felt any scratchy throat or a runny nose, my body would always fail to fight off the illness, and I always developed something more severe.
A couple of months before my diagnosis, I broke out with an uncontrollable and unexplained rash on my feet, and then it shifted to my legs and arms, becoming terribly itchy. Then, as that went away, I developed a persistent minor cough, exhaustion, and increasingly routine night sweats for about a month. I’d become so accustomed to illness that when I went to an urgent care center on Mother’s Day 2017, it was for none of this, but for a pulled muscle in my neck/shoulder.
DIAGNOSIS
At the urgent care center, the doctor was far more interested in my cough and night sweats, and did an X-ray. It showed an abnormality in my chest. A couple of days later, I had a CT scan done at Massachusetts General Hospital, which again revealed an abnormality. A biopsy was done in my upper chest, and that revealed Hodgkin lymphoma. Then a Pet-CT scan determined my staging: stage 2. The American Cancer Society says that:
(Stage II) HL stage is found in 2 or more lymph node areas on the same side of (above or below) the diaphragm, which is the thin muscle beneath the lungs that separates the chest and abdomen.
I had a mass of discharge under my chest (mediastinum) of about 6.3 cm, which was pushing against my lungs and forcing me to cough.
My diagnosis was Stage 2 Classical HL, nodular sclerosis subtype, what the LLS calls the most common (70%) of all subtypes.
MY TREATMENT
One of the benefits of going to a cancer hospital is the opportunity to be put in trials.
ABVD is a common first line of treatment for Hodgkin lymphoma, and is a cocktail of adriamycin, bleomycin, vinblastine, and dacarbazine.
I was placed in a trial run of brentuximab vedotin served up in a lovely cocktail of adriamycin+dacarbazine. What my hospital termed B-AD. Brentuximab vedotin is typically used for patients as a second line of treatment.
ABVD contains bleomycin, whose side effect is lung damage. Brentuximab's main side effect for me was tingling and temporary loss of feeling in the tips of my fingers. I became known to go to pick up something and find it flying out of my hands across the room. Bye, phone and TV remotes.
Both drugs are split into two treatments in a cycle of 28 days. The ABVD runs for 6 cycles of 12 treatments, whereas the AD+brentuximab was run for 4 cycles of 8 treatments (with the possibility of an additional 2 cycles). By the completion of the second cycle, the cancer was gone, so the additional 2 cycles were removed.
My understanding is that there were more than 30 people in the trial and we are all cancer free in 2021. So I hope brentuximab or other less damaging drugs replace the potentially lung-damaging bleomycin.
The “good cancer.” LOL.