Cliff Notes

2020-08-03 4 minute read

While everyone has a unique journey, I hope that this blog provides some comfort to those recently diagnosed with Cancer. When I was diagnosed and as I went through treatment, I know I found comfort in reading through the experience of others. While I have several posts covering the various scans, tests, treatments, etc…I know not everyone will want to read through all of the posts and just want a high level summary of my experience. To that end, I created this post.

As I write this (8/3/2020), I am on day 10 of my sixth (and expected to be final) round of chemo. I was initially diagnosed with Non-Hodgkin’s lymphoma on March 17th after visiting the Dr. about a swollen lump in my neck. For the record, the WHO declared COVID-19 a pandemic the week prior (March 11th). I had several diagnostic tests to get a better understanding of my cancer and how best to treat it. This included a bone marrow biopsy, PET/CT scan, and echocardiogram. In addition, I needed a surgery to obtain a better biopsy vs. relying solely on the results from the fine needle aspiration.

The initial pathology indicated “Burkitt” lymphoma. This is an aggressive cancer, so I was started on a chemo regimen known as “R-EPOCH”. Several of the drugs in this regimen are given over 96 hours. In my case, I did not have to stay at a hospital or oncology office, but was provided a pump to receive the chemo. I had an appointment each day to refill the pump until the infusion was complete. As the pathology and test results of my case came in, it was recognized that my cancer was likely a “Burkitt-like” cancer, but not Burkitt lymphoma. As a result, I switched to a R-CHOP regimen instead of R-EPOCH. This had similar drugs, but was provided in one day as opposed to the 96 hour infusion. In addition to chemo, I was provided a “pegfilgrastim” shot after each round of R-EPOCH. This shot encourages your immune system to create white blood cells. Unfortunately, it also causes “bone-pain” for several people (myself included). For me, this generally started around 4 days after the shot and lasted 2-3 days. It was uncomfortable, but manageable with acetaminophen. I was happy to have the immune system support, but also happen to not need the shot under the R-CHOP regimen. Both of these regimens had a cycle length of 21 days.

Overall, I had similar side-effects from both R-EPOCH and R-CHOP. The oncology group has the side-effect management system down and provides several pre-meds ahead of treatment. As a result, I never felt nauseous to the point of throwing up. The worst of my side effects seemed to occur around days 5, 6, and 7. I have a hard time putting the feeling during this time into words. In general, I would feel a little fatigued and just sort-of “out of it”. This included feelings of anxiety, and apathy. I continued to work through treatment. I was fortunate enough to have the ability to work from home. In fact, all of my co-workers were working from home as well due to the global pandemic. During the worst days of treatment, I was well enough to work, it was just a bit harder to concentrate. During the last 2 cycles, I took 2 days off in this post treatment week, just to make it easier and to have extra time to hang out with the kids (this was summer break, after all). Once my treatment was done for a cycle (day 5), I would only need weekly visits to the oncologist to change my PICC line dressing until the next cycle started. My PICC lane gave me a lot of trouble. My skin reacted to the chloraprep used in the dressing changes and was a constant battle.

My lymphoma was caught early enough that it was still considered “stage 1” (a rarity when it comes to non-hodgkin’s lymphoma). As a result, I had a new PET scan completed after my 2 cycles of R-EPOCH. The results showed a complete response. I have one additional “post-treatment” scan scheduled 4 weeks after the final treatment. As long as that scan is clear, I would only have 3, 6, 9, and 12 month follow up appointments assuming there are no new symptoms.

Summary:

  • 34 - Oncology Appointments
  • 2 - Cycles R-EPOCH
  • 4 - Cycles R-CHOP
  • 1 - Bone marrow biopsy
  • 1 - Lymph node open biopsy
  • 1 - Intrathecal Methotrexate
  • 3 - PET Scans
  • 1 - MRI