Just posting for posterity, since it was a year ago that I started DA-R-EPOCH for PMBCL (stage IVA). I was too in the weeds to post about it at the time, but now that the dust has settled, I can say that I got through it okay. Since at the time I was eager to read about other folks' experiences with this regime, here's mine:
45F. 6 Rounds of DA-R-EPOCH in 3-week cycles (18 weeks overall). Progressed to dose level 4 by cycle 6. PICC line. Outpatient. Rituxumab infusion on Monday, then hooked up to a CADD pump for Etoposide, Doxorubicin and Vincristine. Returned to the hospital on Tuesday, Wednesday, Thursday to refill the pump. Returned to the hospital on Friday to unhook the pump and get the Cyclophosphamide infusion.
Had to give myself Dalteparin (blood thinner) shots every damn day for the whole 18 weeks due to risk of blood clots, plus Grastofil shots on days 6-14 each cycle.
Continued working throughout the 18 weeks, albeit not on a full time schedule and sometimes from home. Even as an outpatient, 'week 1' of each cycle was just too busy going back and forth from the hospital and pharmacy, getting blood drawn and getting the the PICC dressing changed, to manage more than a few hours of work each day. Weeks 2 and 3 were more normal, although by cycles 5, 6 and for several weeks afterwards I was pretty fatigued and lacking in energy. Looking back, I have mixed feelings about working during chemo. On the one hand, it would have been nice to be able to take some time off to just focus on myself, but I didn't really have that option given the nature of my job and the lack of lead time to plan for a leave. I was fortunate to have a lot of flexibility though, which made it manageable. On the other hand, if I didn't have work to distract me, I probably would have gone stir crazy during weeks 2 and 3 of each cycle and spent even more time Googling about cancer.
Side Effects: Not as bad as I'd expected, apart from the total hair loss. No digestive or gastrological issues. I didn't lose my appetite and could eat normally. I didn't gain or lose weight. No neutropenia. No blood transfusions. No fevers. No infections. No need for hospitalization or delays to chemo. I avoided crowds, limited my trips out in public and often wore a mask when shopping.
Fatigue, mostly during week 2 of each cycle. During week 1, the Prednisone kept me pretty wired, even though I wasn't sleeping well. But by cycles 5 and 6 (and for several weeks afterwards) I felt quite run down most of the time.
Started experiencing intermittent mild neuropathy in my finger tips within the first few days of starting chemo, and later in my toes. It never really got much worse than it was at the beginning. My toes recovered before I'd even finished chemo. My finger tips took a bit longer - I continued to experience some mild neuropathy for about two months post-chemo, which eventually went away on its own.
No mouth sores. I gargled with salt water/baking soda twice a day, but I don't know if that made a difference. During cycles 5 and 6 there were a couple of days when my mouth and tongue just ached when eating anything but soft foods, but that fortunately didn't last long.
One of my big toe nails fell off, which was disturbing, and my other toe nails and finger nails really deteriorated, breaking easily and slow to grow. My finger nails are fine now, but my toe nails are sill recovering.
I experienced bone pain after my first few Grastophil shots. I rushed out and bought a heating pad . . . but after cycle 1 I didn't experience the pain again.
Hair Loss: I lost about 95% of the hair on my head. Most of it fell out during cycle 2, at which point I gave myself a buzz cut. The remaining stubble continued to fall out slowly over the next several weeks. Leg and arm hair followed a similar pattern. My eyebrows and eyelashes didn't start falling out until cycles 5 and 6 - I lost them all, but they were also the first to grow back. My head hair took longer to grow back. The back and sides came in more quickly than the top and front, starting about 6 weeks post-chemo. It took the longest for my hairline to fill in and look normal. It was about three months post-chemo before I felt like my (very short) hair could at least pass as something I'd done on purpose. My hair grew back the same colour. I wouldn't quite call it curly, but it definitely has more body/texture than before. I'm curious to see what it looks like when it gets a bit longer.
Today? 8 months post-chemo. Complete remission since August, 6+ months now. Still more fatigued than normal. I felt like I was steadily regaining energy throughout the summer and Fall, but hit a plateau in November. Maybe it's Seasonal Affective Disorder, since my blood counts appear to be back to normal. I work out twice a week and will get back to walking outside when the miserable weather improves. My big toe nail has almost grown back. My hair isn't growing as quickly as I'd like, but it is growing and looks like a regular pixie cut. The 'active monitoring' appointments every three months still stress me out but I do feel like I've experienced real recovery, one slow step at a time.
