Yesterday was my first day of chemo. I was excited. I know that sounds weird, but in my defense, it had been 37 days since I first learned I had lymphoma, so it was absolutely fabulous that we were finally doing something about it! (I'll probably tell that story later. We'll see.)
Primary mediastinal B-cell lymphoma is typically treated with one of two protocols: R-CHOP or Dose-Adjusted R-EPOCH. Basically, R-EPOCH is R-CHOP plus another drug (E), but it is administered in the hospital where they can actively adjust the dosage based on your blood cell counts. It requires a 4-5 day hospital stay every round of chemo because it is a more closely monitored and 4-day continuous administration. The advantage, though, is that you don't have to get radiation after chemo is finished. R-CHOP can be administered on an outpatient basis, but for bulky disease like mine (I have a large tumor as part of my lymphoma) they will do radiation after chemotherapy to minimize the risk of recurrence. The downside to radiation is that it has some long-term potential side effects, like increased risk of other cancers later on. But for the two protocols, five year survival rates are about the same, plus or minus 5%, and both are in the mid-80% to low 90% range. So - there's a good chance of winning either way.
I thought about it a lot, but ultimately decided to go with the R-CHOP protocol. Hospital stays are an immediate high-stress thing. Long-term risk of future cancer due to radiation exposure is a delayed high-stress possibility. For me, the decision came down to how much more stress I felt I could take on right now, and how quickly I wanted to get started on treatment.
For the other biology nerds like me out there (or if you just want to know what kind of drugs they are giving me)...
R = Rituxan, a monoclonal antibody that binds to a protein only expressed on B-cells, targeting them for immune response. When the immune system gets to them, they lyse (burst open) and die. This is the coolest part of the treatment, I think, because it is specifically targeted to B-cells, and doesn't affect other cells in the body like the other chemo drugs do. From what I understand, this drug has made the CHOP protocol significantly more effective in treating large B-cell lymphomas.
C = Cytoxan, which binds to DNA and inhibits replication, causing cell death.
H = Doxorubicin Hydrochloride, which does a whole bunch of things to cells, including sticking itself in between base pairs of DNA, preventing DNA replication and protein synthesis.
O = Oncovin, which interferes with cell division by stalling it in metaphase.
P = Prednisone, which stimulates apoptosis (programmed cell death) in tumor cell populations, among other things (including making me kinda loopy while I'm taking it).
The CHOP drugs all target rapidly replicating cells, which is why you see side effects like hair loss, nausea, loss of taste, "chemo brain" (forgetting things or slow thinking), etc. As a random side note, I find it interesting that none of the drugs contain the word "toxin", but some of them come close. :-) Coincidence? Maybe not...
As another random side note, some people have told me that one of the side effects of chemo is that it makes everything taste really salty, even if it isn't. Maybe that's because some of the drugs are synthesized and administered in the salt form; the body then breaks them down into the chemical structure they need to be effective.
End of biology discussion.
The first chemo treatment went much better than I expected. We arrived about 9 am. By 9:30 the nurse had connected the IV to my port - getting a port was a great decision, since it doesn't hurt at all to put the needle in (and thus I don't freak out, either!) - and by 10:15 or so we had started the infusions. We started with two anti-nausea drugs and some benadryl to counteract the expected reactions from the chemo drugs, and then moved on to the Rituxan infusion. The nurse also gave me some Tylenol (to manage any potential pain). The body is usually resistant to the initial dose of R, so they administered the infusion slowly and monitored me pretty closely for reactions. I did relatively well, and only had one minor reaction that was easily remedied with a little steroid infusion. After that it was smooth, albeit slow, sailing! Once we finished R (around 1:30), the nurse gave two more drugs as quick pushes, which are administered through a syringe hooked up to the IV; these only took a few minutes each. The last infusion took just over an hour. They pushed some saline through the port to ensure the chemo had made it into the bloodstream, added some heparin to keep the port from getting blocked by clots until next time, and I was done. (Yep. Eight new drugs in one day. A new record.) By that time it was about 3:20, and I was on my way home. The last part of the chemo (Prednisone) I take in pill form once a day on chemo day and four days following.
"Chemotherapy" has always sounded like a hard thing to me, but in reality it was just a lot of sitting around reading a book or talking to people. I could get up and walk around, but I had to roll my IV pole along with me and maneuver around the furniture in the chemo room, which kind of put a damper on things. So much for getting any exercise during treatment! :-)
The hard part is the side effects... but so far, so good. I've been able to manage what I've had so far. My biggest challenge has actually been a stress headache (likely a result of the trauma of new things + new drugs + how they react in my body). I feel a little loopy sometimes (thanks to P) and tired other times, but I think if I pay close attention to my body and stay on top of things I will do pretty well. We will see what happens after the long-acting anti-nausea drugs they gave me before chemo wear off; then I will have to manage it with pills, which I have but don't know yet how they will work.
Prayers have helped tremendously. A big thank you to everyone who sent a thought to heaven for me yesterday. I honestly didn't expect to have so few issues with the first chemo administration, and I felt it was an answer to your prayers that it went so well. Your help makes a big difference.
So... we are 1/6 done with chemo - the next one is three weeks from yesterday - and the end is in sight! It's a little funny... ever since I learned I have cancer, I've had to learn to take things one day at a time, not commit to things because I don't know how I will feel or if I will be available (or at the doctor), and focus just on this minute or, if I'm doing well, today. But at the same time, I want to keep in remembrance that everything will turn out well and that this won't last forever. At work, I tell people one of my skills is that I can look at the big picture as well as the details and zoom in and out between the two with relative ease. It's a little harder when it's my own life, but I'm grateful I can practice that skill in this experience. I spend most of my time in the details (the minute-to-minute "how do I feel?") but every once in a while it is good to zoom out again and see how the Lord is working to make the long-term outcome a good one for me. Yay for that!
Feel free to ask questions in the comments if you want to know something specific and I will do my best to oblige with a good answer in another post.
Until next time...
Love the CHOP explanation. All of this info helps me understand. Thanks for sharing.
ReplyDeleteYou're amazing! The more I hear from you, the more impressed I am. I'd say all the usual things (like let your body tell you when uoure doing too much, let us love you, etc), but you already know jow to do that! (Mostly!) :). we love you and we're he're for you (as in: we're HERE in Utah excited to get you here soon!) --but you know, here for you in the other sense too! Love you, Liz! This will be hard but great. Treatment here we come!
ReplyDeleteLady I hope you are okay!! My cancer therapeutic was design to treat B-cell lymphoma. It's in the clinic now. It is a small molecule inhibitor design to eliminate the need for chemo therapy. Also unlike an antibody, it can be cleared from your system quicker if you have negative side effects from treatment. Here is the information if you are interested. https://clinicaltrials.gov/ct2/show/NCT01949883?term=constellation+pharmaceuticals&rank=2
ReplyDeleteI'm glad it went well & that you handled it well. I can sympathize w/ you on the Prednisone. I've been on it before an am on it now for the past month. Makes me manic. I'm aldo on another drug typically used for cancer, 6 MP (mercaptopurine). I have Crohn's disease. I'll be able to taper off the prednisone after I get my 2nd Remicade infuson. Just have to jump through a couple more hoops for insurance before I can start Remicade.
ReplyDeleteWould you mind telling me more about your tumor?
Love you!