Sunday Morning Coming Down: Chemo Side Effects

So, I've finished the first week of my first cycle, and more importantly, I've finished my first heavy (i.e., cisplatin) week and think I've dealt with it pretty OK (still eating, exercising, not in the hospital, etc.). If the reports are true, days 6-7 are usually the low point of the cycle (at least in terms of fatigue and nausea), because this is time when cisplatin levels peak. The next few weeks will probably see my blood cell counts drop a bit (as blood cell production slows), and then hopefully rebound in time for day 1 of the next cycle.

Overall, this week hasn't been too terrible in terms of side effects, but I thought I would document my initial response to the loads of drugs that I've been taking. I've arranged this in the temporal order of my average day so far (so, if you run into me at 3:00 AM, you know what to expect...:) )

Thanks so much to everyone who gave me rides, stopped by the cancer center, or just checked in -- it's been a good time seeing everyone, and has certainly made the time pass faster.

12:00 AM: Steroid-Induced Insomnia

 The steroids that I've been getting every day before cisplatin help quite a bit with nausea, but they have the unfortunate side effect of making it a bit difficult to sleep. I've tried a variety of combos of sleeping drugs throughout the week (melatonin, Ambien, Ambien + Benadryl), with mixed success. I think I've done fairly OK so far, though, at least compared to some of the horror stories I've read on the internet. I had difficulty falling asleep the night I took only melatonin (but ended up sleeping a little later in the day), and have had difficulty staying asleep I've taken just the Ambien (I usually am up for the day by around 5:00 AM).  I've averaged between 4-6 hours of sleep a night so far, which is enough to be (barely) functional on, so I can't really complain.

As far I understand the treatment schedule, I should be off the steroids entirely from days 9-21, unless I encounter unexpected problems with nausea. So (hopefully) this sort of insomnia might really be a short term thing.

2:00 AM: Cisplatin, Kindeys, and Peeing!

Because of the large amounts of fluids I've been taking in, I don't think I've made it through a single night this week without having to get up and pee at least once or twice (which I never do normally). This plays a bit in to the insomnia, obviously, but I'm usually able to get back to sleep after my initial pee break.

I get a liter of saline every day with my cisplatin, and have also been told to drink an additional 2-3 quarts of clear liquids over the course of the day. This serves to protect my kidneys and bladder from the harsh effects of the cisplatin. Ideally (though I don't know how plausible this really is), this might also help reduce the chance I suffer some of the other negative cisplatin side effects, like hearing loss (the chance and degree of hearing loss is dose-dependent, and it's at least plausible that flushing a given dose of the drug in a timely manner will help alleviate these sorts of side effects).

I have to admit that I'm already a bit sick of drinking gobs of water, which doesn't taste quite the same as it is used to (and I'm sure that this will get worse). On a positive note, though, the cisplatin should be mostly out of my system by the end of next week, so this might also be a pretty short-lived side effect.

5:00 AM: Awake and a Little Nauseous

My nausea has gotten a little worse each day this week, which is what I had been led to expect. However, it hasn't really been enough to keep me from eating, and I usually can handle it by making sure to have some bread and liquid every two hours or so (if I start feeling nauseous, I usually try to eat something small fairly quickly). The nausea apparently has (at least) two causes: the cisplatin itself makes most people nauseous (this is actually the reason it's given over 5 days instead of in a single day), and the chemo regimen will eventually degrade the lining of my GI tract, which can also lead to nausea. So, the good news is that the nausea will most likely get better over the course of the next two (light, cisplatin-free) weeks; the bad news is that there will probably be some cumulative effect as well, with cycles 2 and 3 being a bit worse than this cycle has been.

The advice for nausea is to eat small portions of fairly bland, easily digestible foods (rice, pasta, toast, etc.), and to avoid eating things you really like when you aren't feeling well (so chemo doesn't ruin them for you for the rest of your life). Protein is all well and good, but fatty or super- spicy food can be bad. So far, I've found I prefer eating at home to eating out, both because I can decide what exactly I want to eat, and because I don't have to smell and see all the weird shit strangers in the restaurant are ordering or eating (which is strange for me, because I usually think everyone's food looks good, even it is something I never could or would eat).

In any case, I'm usually up by 5:00 AM and have a snack, but generally don't do much besides read newspapers and/or lay on the couch until Anne gets up 7:00.

9:00 AM: Fatigue, Exercise, Cancer, and Chemo

Fatigue can be caused by both chemotherapy and the underlying cancer, and is (along with nausea), the most common side effect for those undergoing chemotherapy. The main remedy for fatigue is (not surprisingly) physical activity, which can help boost energy levels, and maintain immune function. Weirdly enough, I've worked on several books on cancer and physical activity over the last few years, so this one of the few areas of the whole experience in which I really felt like I knew something.

The Department of Health and Human Services and the American College of Sports Medicine recommend that patients undergoing chemotherapy aim for the same exercise targets as normal adults (at least 150 minutes moderate-intensity aerobic exercise + 10 minutes resistance training twice weekly), with the big caveat that that you don't do anything to endanger your recovery, such as going to dirty, sweaty gyms; lifting heavy weights; or doing intense, long-duration workouts. My exercise has mostly been walking 30 minutes a day, with a few short jogging intervals thrown in every few days. I've also tried lifting 3 or 5 pound weights to maintain functional strength in my upper body, but I don't plan on doing on any sort of progressive resistance training beyond this.

The basic goals of exercise for chemo patients seem to be (1) avoiding massive loss of muscle mass and bone density, which can complicate treatment in all sorts of ways and (2) to maintain functional ability, which can help you feel better. Exercise is also linked to outcomes like less insomnia, less nausea, and prevention of diabetes-related complications (which the steroids and chemo can sometimes cause), all of which would certainly be nice. The first point is an especially important one -- I remember seeing studies that the muscle loss due to a single bout of cancer and chemotherapy can (in many cases) be the physiological equivalent of 10 years of normal aging. The chance of a late cancer relapse is also inversely related to physical fitness, with fit people being quite a bit less likely (up to 50% less likely) to have late relapse.

OK, so that's it for my evangelizing in favor of exercise. If you see me out waddling around West Side Park, though, now you know the back story.

11:00 AM Chemo and the Brain: Trying to Write

I've been trying all week (mostly unsuccessfully) to work on an article on Jeopardy and Philosophy for Open Court Press. I did get an outline mostly done, and my hope is that next week will be quite a bit easier, as I'll be on less drugs and, hopefully, able to sleep better. In any case, lots of people complain about "chemo brain" making it more difficult for them to work, and I can certainly see where they are coming from.

Cancer and chemo can make mental function difficult in all sorts of ways, and the effects seem to vary by individual. In my case, I think it's mostly been an attention-span thing: I simply find it a bit more difficult (though not impossible) to maintain focus on doing things like taking detailed notes, or making sure that I've included all my articles in the appropriate places (I have a long-standing habit of leaving words like "of" and "in" out of my sentences, and I can see this trend getting worse). I also find myself staring blankly at the screen for extended periods of time, though I've always had a habit of doing this.

A quick internet search on "chemo brain" gives me all sorts of theories based on the potentially neurotoxic effects of chemo, but I'm not sure how well established these really are (I don't see any great proposed mechanisms that would cause this, for one thing, since most chemo drugs don't pierce the blood-brain barrier in therapeutic doses). I'd also find it perfectly plausible (and preferable!) to think that chemo brain is due to the more obvious suspects (insomnia, malnutrition, stress, whacky antinausea drugs, etc.), which everyone already knows impact mental function, at least in the short term.

On the bright side, I have one of those "memory trainer" programs on my Android, though, and my scores don't seem to have gotten significantly worse than before I started treatment. So, I'm cautiously optimistic that I'll still be literate when this is all over.

12:00 PM: Lunch and Chemo

I usually feel a bit less nauseous after exercising, and eating lunch hasn't been too bad. My usual experience (at least so far) has been that food never sounds especially appetizing when I am thinking about it, but actually goes down OK. I've been eating lots of lightly seasoned rice, pasta, and bread, and have tried my best to throw in easily digestible proteins like tuna and tofu for every meal. My hope is that I can broaden my diet a bit on my two off weeks, but I'll just have to see how this goes.

On my heavy weeks, chemo starts at 9:00 AM on Monday and 1:00 PM on Tuesday through Friday. It usually lasts until about 5:00 PM, but this depends on what rate the nurse decides to set the saline to (I'm not sure quite sure how they decide this, and I'm not positive there is any hard and fast rule). The Carle Cancer Center is a brand new building on the south side of University Avenue, and I can usually be found in the main lounge, which consists of 20 or so recliners (in groups of 4), and a huge window looking north toward the hospital and north clinic. There are usually 5-6 patients at any time, most of whom are either visiting with guests, napping, or listening to music. I haven't really got a chance to talk to many of them yet, but I'm hoping that I eventually will (on Wednesday, there was an Amish/Mennonite party in the chair across from me, which for some reason had surprised me, but I suppose that it shouldn't have).

There is a team of around 8 RNs that staff the chemo center (1 male in training, plus 7 females who seem more experienced), and I've had positive experiences with all of them. When I first get there, a nurse will insert the line into my med port and hook me up to a bag of saline, which stays hooked up for the entirety of the afternoon. Then, I cycle through (1) a bag of antinausea drugs, (2) a bag of etoposide, and (3) a bag of cisplatin. Every time my drugs are changed, a team of two nurses will come by and confirm the name and birthdate on the bag, just to make sure all is on the up-and-up. My only worrisome experience this week concerned getting my antinausea drugs for the weekend, which took about eight requests on my part, and didn't actually get done until Friday at 6:00 PM (I could tell something had gone wrong, because the nurse had looked a bit befuddled as to why no one had ordered the drugs before this time). But, overall, I've had a really positive experience with the team at Carle.

6:00 PM: Nightcap

When I get home in the evening, I've found it a bit hard to stay focused -- the steroids keep me awake, and the chemo and other antinausea drugs make it difficult to be productive. Dinner is, by and large, very similar to lunch -- I'm never super excited to eat it, but neither have I had (so far) much problem keeping it down. So, mostly, I play around on the internet and read stories about college basketball (i.e., Illinois) and/or the Republican primaries (i.e., Rick Santorum), neither of which has really done me much good. Again, though, this seems more like an exacerbation of old, bad habits than anything created ex nihilo by cancer treatment.

Because of the steroids, I'm never really "ready" for bed, but I usually take some sort of sleeping aid at 10:30 or so, and will usually be asleep within an hour.

Next Week

Next week, I should (hopefully) only have to be at the Cancer Center tomorrow (Monday), then home the rest of the week. Tomorrow at 12:00, I'll get my blood drawn for a basic metabolic panel (iron, trigylcerides, blood cell counts, etc.), then meet with the oncologist, then get a round of bleomycin, then go home at 4:00 for the week. This is presuming my blood counts are all acceptable for me to go home, which I expect they will, based on how I am currently feeling.


As far as I know, they won't be checking for tumor markers tomorrow, though, so I still won't know how well the cisplatin is working. For this news, I'll have to wait until the beginning of cycle 2, which will be two weeks from Monday.

Day One: Brendan's Drug List

(3/5/12 -- I updated the drug list to include my anti-nausea drugs, and added a bit more on info on cisplatin and some of the other drugs)

So, today is the first day of chemotherapy, and I am writing this post in Infusion Room 4, on the second floor of Carle Cancer Center.  Anne and Kramer are here with me, and we've had a pretty decent day. I napped a bit, had take-out from the Courier Cafe for lunch, and watched Tinker, Tailor, Soldier, Spy on my laptop in the afternoon. And now I'm writing this! I've felt pretty good all day, although I for some reason felt fairly dizzy and nauseous right after getting my blood drawn from my port for the first time. I'm not sure how to account for this, but the nurses seemed to think that this wasn't super abnormal, so I think all should be well.

I had a really good time visiting everyone in Minnesota and Wisconsin, and even managed to gain around 4 pounds when I was up there eating with you all (which is perfectly OK with me, as I imagine weight loss won't be my primary concern for the next little while). And thanks also for the all the wonderful cards, books, and assorted gifts. Right now, I'm just finishing up Terry Prachett's Small Gods (which has some absolutely great passages that I could envision teaching in a philosophy of religion course), and then it's on to my new books!

Today, I got to have my own private infusion room with a chair, TV, and laptop desk. In the future, I think I'll probably be out in the infusion "lounge" with most of the other patients, which I think will work out fine. If anyone wants to visit me, I should be there from 1:30-5 on Tuesday-Friday of this week. Day 1 of each cycle will be the longest day (I was there for around 7.5 hours today), followed by days 2-5 (4 hours each), then days 8 and 15 (2-3 hours), and then everything else (no chemo, though I may need to stop by the hospital to do labs or whatnot). I'll get my labs drawn every Monday, and will have meetings with the oncologist every week or two, just to make sure things are going OK (mostly, he seems to ask about signs of brain metastasis and white blood cell counts, which are really the only things that would require adjusting the schedule.).

In any case, I thought I would devote this post to providing some details about the chemo regimen I'll be on. I'm doing three consecutive 21-day cycles of what is called "BEP chemotherapy." Depending on how my white blood cell counts look, there may be a seven day break between cycles; I've also read the protocol is occasionally extended to a fourth cycle, but my oncologist says he is planning on three cycles for now. While it sounds like some researchers have quibbled about the small details, the chemotherapy protocol they'll be using for me is really the only game in town for stage 3 testicular cancer, and it's been a remarkably successful one (when it was introduced in the late 1970s, it increased cure rates by 900%, or something like that).


This cycle consists of three anticancer drugs given at varying intervals: bleomycin, etoposide (or VP-16), and platinum (or cisplatin). Here's my (very limited) experience with each drug so far:

Bleomycin

I'll be getting bleomycin the first thing on days 1, 8, and 15 of each cycle (so, every Monday for the next 9 weeks or so). Bleomycin has a number of known short-term side effects, so I take a few drugs along with it. First, I take two tylenol by mouth to control fever, then I get 50 cc of Benadryl and some steroids (for nausea)  via IV, then the nurse comes in and pushes a relatively small amount of bleomycin through a syringe into the medport in my chest. The preliminary drugs take about an hour, and the actual injection takes about 10 minutes. Because today was the first day, I also had to get a test dose, just to make sure there were no side effects. The Benadryl ended up making me fairly sleepy for about two hours, but other than that I thought it was pretty OK.

Like most chemotherapy drugs, it looks like the mechanism of action for the drug hasn't quite been nailed down. The drug itself is a byproduct of a certain family of bacteria, although it sounds like they can also synthesize it.  Wikipedia tells me that the current thought is that it works by breaking DNA chains, which causes cancer cells to die (most cancer cells are not able to repair themselves with the same efficiency as normal cells). Also, like most chemotherapy drugs, bleomycin tends to kill cells that are in the process of actively dividing (so, cancer cells, hair follicles, bone marrow, and stomach/mouth lining, to name a few).

The major long-term risk of bleomycin is lung damage, with a chance of decreased lung capacity and an increased risk of oxygen toxicity if I ever need to get pure oxygen (e.g., in a marathon recovery tent, or in a depressurized airplane). This is the drug that Lance Armstrong refused, but all the professionals I talked to seemed to indicate that the risk of side effects for someone like me is relatively low, and really shouldn't affect my behavior even in the event I end up needing to get pure oxygen at some point in the future (I just need to give the person who's administering it a heads up). There has been some research done on TC protocols using only etoposide and cisplatin, but these don't seem to have caught on, and I'm fine going with the standard protocol on this one.

Today, I mostly napped and dinked around on the internet through the bleo part of the day, on account of being loaded up with Benadryl. Bleomycin has a pretty short half life compared to the other drugs I'll be taking, and it should be mostly flushed out of my body by the end of the day.

Etoposide

I get etoposide on days 1-5 of each cycle (so, Monday through Friday of Week 1). Etoposide seems to be the poor sister of the three drugs, and it was a relatively late addition to the protocol (they started using it in the 1980s, when they found that it worked just as well as the more toxic drug they had been using). I get this drug on the same days that I get the Cisplatin, and I get it directly before I get that drug (so, on days that I get all three drugs, this is the second drug I get). Like just about everything else I get during my Cancer Center visits, this is delivered through my medport. I didn't really notice any side effects from this drug being administered today, which is OK with me.

Cisplatin

Cisplatin is the platinum-based drug that really forms the heart of the chemo regimen for stage 3 TC. Before cisplatin was introduced in the 1970s, 5-year mortality rates were around 90%, and treatment consisted of harsh chemo regimens accompanied by regular surgical interventions. In the late 70s, cisplatin was approved for treatment of TC by the FDA after a study at Indiana University established its incredible effectiveness.

On my regimen, I'll be getting cisplatin on days 1-5 of my cycle (Mon-Fri of Week 1), and it will be the last drug of the day I get. In preparation for cisplatin, I get a gigantic bag of saline solution pumped through me, just to make sure my body is flushed out (and to convince me I need to get off my chair and go pee every hour or so). Cisplatin can be hard on the kidneys, so the water is a way of making sure the kidneys don't have to be dealing with anything else other than the cisplatin. It's also the reason I probably can't have very much beer for the next few weeks -- cisplatin has a super long half life (of at least several days), so it will really take my body most of a week to process it all and get it out of my body.

Unlike bleomycin, cisplatin isn't really that cell-specific -- it basically just damages a whole bunch of cells (not just the ones that are  in the process of reproducing), but what it impacts is primarily the ability of cells to eventually divide (so, the cells that actually end up getting affected are the ones that are most quickly reproducing). Eventually, of course, cancer cells will adapt to this sort of regimen, which is the reason that relapses are often less treatable than initial cancers. Good tumor response to cisplatin is the primary driver for TC cure rates, with the best two outcomes being (1) the cisplatin works, and there is no remission and (2) the cisplatin works, there is remission, but there is a still a decent chance that platinum-based drugs can be used successfully for salvage (second-line) chemotherapy. Cure rates drop rather precipitously if the tumors turn out to be highly cisplatin-resistant (which is relatively rare, especially during initial chemotherapy). I should know how my tumors are responding by the beginning of my second cycle, hopefully.

Other Drugs

Along with the chemotheraphy drugs I've just listed, I have been (or will be) on a whole ton of other drugs at various points. It's been kind of amusing seeing Anne and my pill box get fuller and fuller over the last few weeks, but I really haven't felt too badly, even with all of the stuff I've been taking. Here what's in the pillbox (and elsewhere) right now:

Beer -- I probably can't drink very much of it, as it reacts with every drug I'm currently taking, with the possible exception of melatonin. Plus (as mentioned above), it causes dehydration, which can cause problems with cisplatin. If my chemo schedule stays on track, though, I should be able to have a Guinness on St. Patrick's day, maybe.

Benadryl (25 mg, with bleo and as needed) -- The wonder drug! It suppresses certain side effects to chemo therapy, and can be stacked on top of Ambien for sleeping if I really need it. It also formed the base (many years ago) for first-generation anti-psychotics such as prochlorperazine, which I'll also be taking. It also helps with coughing, cold symptoms, etc. I've taken more Benadryl in my life (for seasonal allergies and sleep) than I would care to remember, and I'm still not entirely in favor it--I hate the weird "Benadryl hangover" that tends to persist for the whole day after I take it. Benadryl builds tolerance very quickly (in less than 4 days, it looks like), so it's really not a good choice for a long-term sleep aid.

Coffee -- Coffee is awesome, and I intend to continue drinking it (with my oncologist's permission, of course). I probably can't have a whole pot every morning any more, though.

Dexamethasone (8 mg, with each cisplatin treatment on days 1-5, plus the mornings of days 6-7). This is a steroid that suppresses autoimmune responses to chemotherapy and helps the antinaseau drugs work better. Like most steroids, it has a few whacky side effects -- it makes me a bit jittery (and makes it difficult to sleep), and it can affect the way I process nutrients (e.g., I might lose muscle mass or iron, have problems with triglyceride levels, etc.). Really, though, I much prefer the steroid to the alternative, which would probably be hospitalization to deal with nausea. I've also heard stories about some people who get a bit mean when on these sorts of steroids, but I've so far felt in fairly good spirits. This is another drug with a relatively long half life (>30 hours), so it takes a while to clear out of the system.

Hydrocodone-Acetaminophren (5-325 mg tablet, take as needed)--This is basically generic Vicodin, and I get a new prescription for it every time they cut me open. Hydrocodone is an opiate derivative, so it's a fairly powerful painkiller that has the added bonus of making you care just a little less about everything that happens to be annoying you. It's also a bit addictive, and I always feel a bit more annoyed than normal on the first day or two after I stop taking it. I also take acetaminophren (plain) with bleo, and as needed for fever and headache.

Melatonin (1 mg, take as needed) -- This is what the crazy resident I saw last summer suggested for sleep, before she prescribed me some ridiculously expensive drug that the pharmacist thought was stupid. The chemo doctors seem pretty OK with this one, although I don't take it when I use the Ambien. I think it helps somewhat with sleeping (I once saw a literature review that estimated it increased sleep efficiency by 15 minutes a night or so), but it's certainly not as powerful as something like Ambien. On the positive side, though, melatonin has been investigated over the last 20 years as a possible anti-cancer agent, and I found one meta-analysis showing significantly reduced 1-year death rates for (all-type) cancer patients who regularly take melatonin along with their chemo regimens. Most of the individual studies involved breast cancer, though, so I think this is more a neat fact than an overlooked treatment option.

Ondansetron HCL (8 mg, every 8 hours as needed for nausea; also with cisplatin) -- This is a more targeted anti-nausea drug than prochlorperazine which was developed in the mid-1980s, mostly with chemo patients in mind (though it can also be used by pregnant ladies!). I normally get it with the dexamethasone before cisplatin, and then have a prescription for at home. (A side note: I had to ask for this prescription about 10 times before they finally remembered to write for me; thanks to all of you who've encouraged self-advocacy!). The side effects are listed as dizziness and headaches (and I've certainly read accounts of people having both), but I've been pretty OK with this drug so far.

Prochlorperazine (10 mg, every 6 hours as needed for nausea) -- This is a (pretty potent) first-generation anti-psychotic that is now primarily used to treat nausea in chemotherapy patients, which is why I was prescribed it. It also treats migraines, mania due to bipolar disorder, and general anxiety, among other things (got to love anti-psychotic drugs, right?).

Vitamins (C, iron) -- I used to occasionally take vitamins, mostly because I was worried about iron deficiency (though it actually turns my hemogloblin levels are fine, now that I have to have them taken regularly). I was also impressed by some research showing vitamin C increased iron uptake and suppressed physiological responses to stress, so I would occasionally take that. No more of this sort of stuff though, as it turns out the C and iron combo is actually pretty bad for postsurgical patients (it causes the blood to "rust", I think), and the interactions with chemo aren't really known (and I'd rather not take the risk).

Zolpidem (5 mg, as needed) -- Generic Ambien, for those times when you really want to fall asleep quickly and then wake up at 5 AM, once the damn stuff wears off. Really, though, it's nice to have around, as I tend to spend one night out of every ten completely sleepless (this is a longstanding habit of mine, and cancer doesn't really seem to have made it noticeably better or worse).

The Rest of the Week

I'll be at home (or maybe Aroma, if I'm feeling well) in the mornings, and then at the Cancer Center in the afternoon. If everything goes well, I should be home in the evening. Feel free to stop by or call if you want to chat.