Saturday, January 10, 2009

EPOCH + R, first round

My pathology report states I have diffuse large B-cell lymphoma. This type of cancer is usually treated with chemotherapy. My particular chemotherapy regimen is known as EPOCH + R, and is given in a three-week cycle: five days of chemotherapy, then two weeks off to let my bone marrow recover.

I started on Monday with the Prednisone, a steroid. 100mg of it, twice a day, through Friday. After my first steroid pills Monday, I went to the oncology office to get my first IV drip of Rituxam. This drug kills B-cells, the kind of cell that mutated to start my cancer. Reactions to this drug are common, and they've found that giving Tylenol and Benedryl right before the Rituxam helps to prevent and mitigate its side effects. Like many people, Benedryl makes me sleepy; the nurse said getting it in an IV drip tends to make this side effect more severe. It took four hours to get the IV drip of Rituxam, and I slept through all of it.

When I was done with the Rituxam, they gave me an anti-nausea drip, then hooked me up to a portable IV bag with a pump. This bag had the E, O, and H drugs of the regimen. I didn't like the carry bag that came with the pump system, so I bought a fanny pack to carry around; I was attached to this IV bag 24 hours a day. I went to the oncology office once a day for another injection of the anti-nausea medication and a new IV bag with the EOH mixture.

On Tuesday, the first side effect I noticed was a puffy face ("moon face") from the steroids. People who see me everyday noticed pretty quickly; those I don't see as often couldn't tell. The inside of my mouth has become slightly more swollen each day; it's annoying but not too bad of a side effect.

The next side effect I noticed was the thirst: for the rest of the week, I drank about 12 8-oz glasses of fluids every day - mostly water. My doctor had talked to me several times about how important it was to drink lots of fluids while on chemotherapy; one of the nurses explained that it's partly to help flush the chemo drugs, but mostly it's the breakdown products of all the dead tumor cells that are so hard on my kidneys. Another drug they have me on is allopurinol to help my kidneys deal with these waste products.

I've been easily tired since the end of October; all the tests/minor surgeries at the end of December and beginning of January exacerbated this. Going straight into the chemotherapy treatments I wasn't surprised that all I did at home was sleep, wake up to eat food my partner made, and go back to sleep. I have been able to continue work full-time, which has really helped me feel more normal through all of this.

Excitingly, on Tuesday my heart rate stayed in the 80s all day long. Since the week before Thanksgiving, my heart rate had been between 100 and 120 beats per minute almost all of the time, presumably due to pressure from the tumor. Even after less than two days of treatment, the cancer was already showing signs of shrinking.

On Wednesday I started to have occasional muscle cramps in my inner thighs; painful but not enough to restrict my movement at all. Muscle cramps are a listed side effect of one of the chemo drugs. My regimen is unusual, and not something my oncology office has a lot of experience with. The cramps combined with my really high thirst level made my doctor want to check my electrolyte levels (sometimes potassium levels get too high due to the dying tumor cells) and my sugar (the steroid I'm on can cause temporary diabetes). My labwork came back fine, though.

Also on Wednesday, I started having a sort of ringing/buzzing sound in my ears for a few hours after I got up in the morning. I had this effect this morning, too; the nurse I talked to about it believes it's a normal side effect. I've had some constipation and gas, especially Thursday and Friday. These are listed side effects, and have been fairly mild.

I've had pain or just uncomfortable sensations laying on my right side since August. I had a cough that started the week before Thanksgiving, which by mid-December became so severe I have been unable to sleep on my back or stomach - even taking codeine pills for the cough. Laying on my stomach also caused my heart to start skipping beats, a very disturbing sensation. Thursday night almost all of these symptoms were gone. Just the discomfort of laying on my right side is remaining, and even that it's difficult to say if it's the tumor, or the port I had placed last week. I am so, so excited to see this much progress in just a few days.

Yesterday after detaching me from the portable pump (yay!) I got a drip of the C drug (this took about an hour). I felt just kinda weird, especially in my chest area, for the rest of the afternoon and evening, and wasn't able to nap like I had been the rest of the week (though I was still feeling tired). I've noticed my waistline getting a little larger thoughout the week - I must have been retaining a lot of water while on the 24-hour pump. Last night I woke up at midnight, one, two, three, and five and produced prodigious amounts of urine every time. After the five am trip, my partner commented that my back didn't feel puffy like it had when we went to bed last night.

I get a break from the chemo for about two weeks now. There are some side effects I've been warned to expect. Being immunocompromised is one; the EOC and H drugs all have a side effect of damaging my bone marrow, where many important immune cells grow. I'll be getting daily shots of a drug to help my bone marrow recover until my lab work comes back to their satisfaction. Nausea is another: the IV anti-nausea drug they've been giving me daily lasts about 24 hours. The C drug I got yesterday can cause this side effect for up to 72 hours, so I'll be carrying my prescription anti-nausea pills around in case I need them.

Knowing my hair will fall out was one of the most difficult side effects for me to come to terms with. This is from the EOC and H drugs; they've already damaged my hair follicles. Hair shafts are lined with little pusher cells that control the rate at which the hair comes out of the skin; it takes two to three weeks for them to push the hair out once the follicle stops growing. The delay in this side effect gives me more time to deal with it, but nothing could make it pleasant.

What a week. And I get to do it all over again a few more times. Amazing modern medicine.


Jen said...

It's great that your body is responding to chemo already!! Yay!

Let me know your favorite color and I will knit you a hat. I know it's no replacement for your beautiful hair but it will keep your head warm.

Thanks again for sharing your progress online. I've been thinking about you.


Jennifer @ Conversion Diary said...

Wow, that's a lot going on. I'm glad to hear that you have a break from chemo coming up.

Also, I heard a tip from someone I knew who was undergoing cehmo that you may want to consider shaving your head before your hair starts to fall out. She said it helped avoid some of the psychological difficulties that came with the hair loss part.

Anyway, you continue to be in my prayers. Thanks for the updates.

Anonymous said...

hi,there i am also undergoing the same regime in india and have undergone 6 cycles of chemo,i would like to know that if the chemo stops at 6 cycles or continues for more is tough to undergo as here i am put in isolation and not allowed to go out and even meet anybody due to the dust factor.
Rajnish narula

lyrl said...

Rajnish - I am doing eight cycles, but six is also common. Whether a person gets six or eight cycles depends on how the tumor responds and whether radiation is part of the treatment plan.

C said...

Is this post still running? I'm going through the exact same diagnosis and treatment.

lyrl said...

C - I'm still around, just not active in blogging anymore. I hope your treatment goes as smoothly as possible with things like this.

Kim Kingston said...

So glad that you are still around.. Thank you for your blog post. My daughter (21) has just been diagnosed with stage 4 primary mediastinal b cell lymphoma and has just finished her first round of epoch r... Your blog has helped me tremendously.
My heart to you.