Nov 26, 2012 - 3:28 pm
I was diagnosed with diffuse large B-cell Non-Hodgkin's Lymphoma in July 2012. The sub-class is a rare but aggressive "double-hit" translocation, as a result of two concurrent mutations: BCL2 & c-MYC. Consequently, the tumor was doubling in area every two weeks.
I started treatment in August 2012. My regimen consists of Rituxan (R) on Day 0. The next four days consists of 4 x 24-hour bags of Etoposide (E), Vincristine [a.k.a. Oncovin (O)], and Doxorubicin [a.k.a. Hydroxyldaunorubicin (H)]. On Day 5, I receive a cytoxan called Cyclophosphamide (C). I take prophylactic drugs, mostly anti-fungal, anti-viral and antibacterial. I also take Prednisone (P), a steroid as part of EPOCH regimen. R-EPOCH regimen (Day 0 - 5) is every three weeks, intended to be undergone for 6 to 8 cycles.
I finished the 5th cycle the week before Thanksgiving. I had gone through my first three cycles without hitting the "nadir" (becoming neutropenic). Dose-adjusted EPOCH is flexible in that the dosage changes based on how the patient responds to treatment. Since I didn't hit the nadir, my high dosage was increased by 20% in rounds 2, 3 and 4. By cycle 4, my dosage was 75% higher than in round 1. Because the dosages were increasing, another drug called Mesna was added to counteract the corrosive effects on the bladder and kidneys, from the cytoxan given in Day 5. After cycle 4, I became neutropenic and had a nasty case of oral mucositis. As a result, cycle 5 was delayed a week and my dosage was reduced by 10%.
I have a big decision to make in the next week or so: Do I complete the 8 cycles of R-EPOCH and call it a day, or do I stop at 6 cycles and move forward with the conditioning, treatment and procedure for the stem cell transplant. My biggest concern is the long-term effect of aggregate high dosage chemo; the risks increase with the stem cell transplant. For example, exposure to high-dosage chemo increases the risk of myelodysplastic syndrome (MDS). This is when the bone marrow no longer produces healthy red and white blood cells.
I am a relatively healthy and active male in my mid 40's. I would jog frequently and do other exercises for fitness. I cannot jog now (for risk of passing out), but I do walk a mile or so if it's a nice day and I'm feeling up to it. And I do modified exercises at home to stay in shape. I try to eat and drink nutrient-rich food (although I have my dietary vices when it comes to sweets like ice cream and chocolate).
I have a double-lumen PICC line in my right arm; it doesn't dissuade me from using it to do some basic lifting or isometrics (I don't go overboard). The key is to stay active--physically, mentally, and spiritually--whenever I can. There are bad days, where all I can do is stay home and rest. That's fine. Like everything in life, it's a balance.
To those going through similar treatment, my recommendation is to find the balance that works for you and stay positive! Feedback and suggestions from others in the CSN are most welcome! Thank you and my very best wishes to you all!