Time to get toxic – going to talk chemo, other treatment drugs, and my experience with them so far.
My treatment regimen, my code, or whatever you’d like to call it is DA-EPOCH+R. Those letters indicate the different drugs that I am given and the way the doctors are going to attack my cancer. They run my schedule so it’s something that is a huge piece of understanding what I am going through. Within the acronym there are steroids (P), my immunotherapy infusion (R) and the chemotherapy and steroid drugs (EOCH).
PMBCL has been treated with immunotherapy and radiation in the past as well as with the regimen RCHOP. More recently though, doctors have had strong success with DA-EPOCH+R, which hopefully helps me avoid any time with Radiology. CAR+T is another regimen that is gaining exposure, but fingers crossed I don’t get to that point. It’s currently the next step for refractory cancers, or cancers that are resistant to treatment. Just gonna keep moving… nothing to see or think about here for now…
Every 3 weeks my chemo cycle starts over and the plan is to do 6 rounds of that. I go into the hospital on Thursday (day 1), receive my EPOCH+R, and leave on Monday (day 5). While I’m there I am also on a constant saline drip to keep hydrated. From day 6 through day 21 I am free to do as I please! It’s not quite as great as it seems though because that’s both the time that side effects rear their head and the time for me to recover. I also get labs drawn 3 times during that period. This schedule is a bit different from a lot of others’ chemo treatment. I am hooked up on an IV 24/7 during my admittance vs going to the clinic for a handful of hours and going home the same day. I’m just lucky enough to need the intense dosage / delivery associated with my code.
One of the things I didn’t know before this diagnosis is that typically the weakest times, when I’ll likely have the lowest white blood cells, platelets, etc, is during days 10-14. That means at home I need to be cognizant of cleaning everything (hands, my food, phone, door handles, etc) and be prepared for nausea or other things; at the same time, that doesn’t mean I’m not bff’s with hand sanitizer the other days too though. My Monday and Thursday labs at the hospital (they draw 3 tubes of blood each time and change the dressing on my PICC line on Mondays) let us all know where I stand though and if there’s any heightened risk or if a blood transfusion is necessary. On to the letters of my regimen.
DA: Dose adjusted – Not a drug actually. This is the quick way of saying the strength of the chemo drugs in the regimen will change throughout treatment. AKA you might get more sick each round of chemo. Given my aggressive type of chemo, and maybe it’s how all treatments go but I’m not familiar, the goal of the doctors is to expose my body to as much as it can take and still recover enough for the next round that starts 3 weeks later. Generally they increase my dosages about 20% each round and there fore 4 different levels of dosages under my plan.
EOH: Etoposide, Vincristine, and Doxorubicin – These represent most of the chemo drugs in my regimen. And yes… I realize those words don’t align at all with the acronym. Believe me I’ve asked the doctors to clarify: I’ve learned drugs can have many names and there is no real reason for it besides it was patented under one name and then once it came out of that covered period, some other pharm company decided to call it something totally different. There is the potential here to go into crazy detail on the technical stuff going on inside of me (I hope) so I’ll link chemocare here where they have a great breakdown of the chemistry and biology taking place. What I will share about these gems is that the 3 of them are all mixed up in one IV bag and the infusion is to be given over 24 hours – for a total of 4 bags. I’ve discussed things with my doctors and they’ve coordinated with pharmacists and during Rounds 1 and 2 we bumped up the rate to 22 hrs per bag so that I’m out of the hospital on Monday afternoon. Tip: talk every day with your nurse, and ask your doctor during rounds, about the bags and the timing of when you’ll get discharged. Most important tip though for these bad boys though? BURP THE BAG or maybe make sure that the nurse does it. The chemo is a rosy color and is slightly carbonated which sounds great for a cocktail but is a nightmare for an infusion bag. The bubbles gather in the channel delivering the chemo and the machine beeps and goes off every time air gets stuck in there (see the photo above). It can make for a torturous night when it is already hard enough to sleep with the Prednisone (see below). I’ll be cursing bubbles and bubbly rosé for years to come. To avoid nausea related to these they give me an IV of Zofran before each of these bags. Side effects vary for everyone so I won’t go deep into mine here – I don’t know that these have as big of an impact as the others below. Might do another post another time though.
C: Cyclophosphamide – The final chemo drug in my current treatment regimen. It is literally the last bag that is hung before I’m discharged on day 5 and lasts for about 30min – 1 hour. This is the primary drug in my code associated with hair loss. Hair loss hit me at day 14 of Round 1, but hasn’t yet reached my eyebrows and eyelashes. I am not sure if it’s the fact that I can almost taste fresh air, or because I’m distracted packing up my things, but it’s a pretty uneventful single bag infusion. I don’t have much more to say other than it’s a clear solution and doesn’t have the same carbonation problem I mentioned above so the alarms are nice and quiet.
P: Prednisone – My favorite. And by favorite I mean this thing is probably the worst. I get two of these steroid pills twice a day for each day that I’m at the hospital. I also took steroids as a prophylactic during my oocyte retrieval. First of all, the pills taste HORRIBLE! Like a mix of rotten and vinegar. A friend mentioned I could ask for the coated ones that kids get, and I’ve also been given the suggestion to wrap them in fruit roll ups before ingesting – I’ll give it a go next time. Second, insomnia is common side effect. If my IV isn’t beeping in the middle of the night I am still up for an extra hour or so each night and up early the next morning because of prednisone. Tip: If you can, coordinate with your doctors and nurses to take the medicine as early as possible in the day. I was all kinds of awake when I was given them at dinner one time. Definitely did some unnecessary shopping on Amazon… it’s a dangerous drug! ha! Swelling and water retention are also a significant side effect I’ve run into. Pretty quickly I’ve learned to ask the doc to prescribe a diuretic so that the swelling doesn’t get to be more than a few pounds. If you do that, then be ready for them to track all of your bathroom trips and poke at your ankles/legs to check for fluid retention. The swelling in my face, or “moon face,” has not been avoidable regardless of my medication though, but that’s also where my swelling first shows up / I’ve got pretty cheeky cheeks already. Once I’m off the steroids the swelling goes down on its own. Last of all, I’ll mention that irritability is a side effect that I’ve definitely noticed with this. Be patient with your friends and family around you. Communicate what you want and what you need… also communicate when you feel like you might need to apologize for being extra short or irritable – blame the drugs :). Definitely DON’T apologize though to GrubHub when they mess up the order you put in for your family’s dinner, make you jump through hoops for 40 minutes, and then still charge you for the meal. Not speaking from experience or anything.
R: Rituxan – This is the immunotherapy that I receive at the cancer infusion clinic on day 1 before I get admitted. The pictures above are of the private room I had for Round 1 and the shared room I was in for Round 2. Apparently some insurance policy thing means that this 2 step process is cheaper then doing the infusion from my hospital room. This drug is kinda crazy though. It is a hybrid mouse and human antibody that will attach to cancer cells to mark them as bad cells for my body to attack (all I can think of is the human body episode of the Magic School Bus). For some reason my body has ignored these cells and allowed the cancer to grow. Because of the nature of the origin of this drug being part mouse, people may have reactions similar to an allergic reaction, but I’m given Tylenol and Benadryl to avoid anything like that. This drug too is pretty uneventful for me and I usually nap during the 1-2 hours that I’m in the clinic – primarily because of the Benadryl. I was also given one dose of this treatment during my initial diagnosis stay as another prophylactic measure during oocyte retrieval. That means I’ll actually receive 7 doses by the end of the treatment.
Ok, hope I haven’t bored you but it gives some background into what my schedule is. Everyone’s may be a little different and side effects are most likely ALWAYS different person to person. Leave a comment or use the contact page if there are any questions that you have!
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