Saturday, April 25, 2009

EPOCH+R, round six

In my second and third cycles, my heart rate would stay around sixty during my five-day chemotherapy infusion, then climb up a little over one hundred for a week, then drop back down to the eighties before my next treatment.

In cycles four, five, and six, my heart rate has been much more variable during chemotherapy (sometimes as low as sixty, still, but other times as high as 120). And in the week after (at least in cycles four and five), I've occasionally found my resting heart rate at 150.

I complained about this to my oncologist, and also let him know that light workout tapes bring my heart rate into the 170-180 range. He said he'd like to see my heart rate stay under 120. If my resting heart rate is elevated, he recommended nothing more strenuous than walking. He also sent me for an ECG and echocardiogram (ultrasound of my heart), both of which were fine.

I'm not thrilled with the high heart rate and my onc's disapproval, but the ECG and echo results are reassuring. Considering how much better I've felt these past few weeks (versus the previous weeks when I skipped exercising), I can't see myself giving up my workout tapes.

My onc did say that dehydration can contribute to an elevated heart rate. I've been having swallowing aversion and resulting low fluid intakes during my first break week; my first break week is also when my heart rate is the highest. Interesting. I don't know if my subconscious decided to run with that suggestion or what, but my fluid intake during treatment this week was 11-12 8-oz glasses a day. It hasn't been that high since my very first cycle; I was surprised at how consistently thirsty I was every day. It seems likely I'll have the swallowing aversion again this coming week; if so, I'm going to ask for IV fluids from my oncology nurses. That would be a simple enough thing to take some strain off my heart.

The increased fluid intake resulted in more nighttime restroom trips; the past few days these have been accompanied by buzzing/ringing in my ears (not the typical single tone of tinnitis, but more like a rainstorm). Friday morning when I first got up for the day, the ear sound was particularly strong, and I actually felt faint, which has not happened at any other time in my treatment.

Back to planning for the near future, I now have a numbing mouth wash to use for tongue pain. It seems likely it will again been severe enough to interfere with talking and eating painful. Apparently this kind of tongue pain is called stomatitis, although most texts discussing stomatitis talk about mouth sores (which I have not had). An article on EPOCH-R says stomatitis was "uncommon", but it happened enough to make their toxicity table, at 12% of cycles. The text of the article says stomatitis typically occurred in later cycles, which has been my experience. The Oncology Nursing Society says stomatitis may correspond with the white cell count nadir (lowest number of white cells), which has also been my experience.

Other things to look forward to this week: general weakness and bone pain. I think the weakness is what is called a "steroid crash". Lymphoma patients getting a more common regimen called R-CHOP get chemotherapy for one or two days, except for the steroids which are given for five days. They typically have lots and lots of energy and sleep very little on the steroid-only days; when they stop the steroids, they crash. I get chemotherapy for all five of my steroid days, so I don't really get the steroid "high". But I think stopping the prednisone still makes my body go, "What? I have to make my own steroids now?" and my increasing weakness these next few days is a "crash".

The bone pain last cycle was not nearly as severe as cycles one and two (before my chemo doses were escalated). But it woke me up for four nights in a row to take more pain meds; in cycles three and four taking 1300mg of acetaminophen before bed lasted me all night long.

Whew. I think I'm written out on chemotherapy for a couple of weeks (this blog has been a helpful therapeutic tool). On to happier things!

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