This post is intended to be a wrap up of things I would have liked to know about what having chemo is like, and what things would have made my life easier if someone had told me. Or possibly stuff I was told but didn’t truly appreciate because of the total information overload that is chemo prep.
Caveat Emptor: I was diagnosed with Stage IIA breast cancer, estrogen and progesterone positive, HER2 positive. I chose to do the major 6 rounds of chemo before surgery and continued with one drug for the remainder of a year, had a lumpectomy and reconstructive surgery, had radiation treatments, and am now taking a hormone suppression drug. If interested, the reasons for these choices are available in my preceding blog posts. My point, and I do have one, is that not all cancers are the same, therefore not all chemo regimens are the same, so your mileage may vary, check with your doctor, etc. etc.
My specific treatment: My chemo regimen is commonly referred to as TCHP (taxotere, carboplatin, herceptin, perjeta). I had 6 major rounds of all 4 drugs, 3 weeks apart, and then continued to have herceptin rounds every 3 weeks for the remainder of a year.
I’m not gonna lie, chemo sucks. They are using the drugs to try and poison the cancer cells, both the ones in the tumor, and the ones trying to get away. But in order to do that, they have to send those drugs throughout every system in your body, which causes all kinds of damage. The key word here is cumulative. The cancer killing effects of the drugs are cumulative, and the effects of the drugs on the rest of your body are cumulative. As bad as the first round is, the second will be a little bit worse. The first few days after each infusion are the worst, so plan accordingly.
One thing I want to stress: The doctors have a bunch of different options for meds to help with the side effects, so if one of them isn’t working for you, tell them. Let them help you.
Note: I don’t have any financial stake in any of the brand-name products that I discuss below, I’m just telling you what specifically worked for me.
Blood Side Effects
Chemo acts against fast-growing/replicating cells, and your blood has a bunch of those: red blood cells that carry oxygen, white blood cells that fight infection, and platelets that make your blood clot. So, after every infusion, the “count” of each of those types of cells will go down for a while, and then come back up. The lowest point of that dip in numbers is 7-10 days after infusion. They will likely give you something to help with that, and I’ll talk about that later, but it won’t eliminate the effects and it’s important you understand what it means for you.
Fewer red blood cells carrying oxygen means more fatigue. Fewer white blood cells fighting infection means you will catch things easier and have a harder time getting over anything you catch. Fewer platelets for clotting means you will bruise ridiculously easy, and any cuts will take longer to stop bleeding.
So, during your period of highest risk, 7-10 days after your infusion, it’s important to be careful. Rest. Try not to be around anyone who is sick. Try your very best not to fall or cut yourself. And if you have to go to a doctor’s office or the ER, wear the silly mask they’ll give you if you ask. An abundance of caution is what’s called for here.
Ports
A port is a device they insert in the chest to facilitate the infusions. It’s designed to keep the veins in your arms from being destroyed by repeated IVs. It has to be inserted surgically, under general anesthesia. I highly recommend getting this done.
Don’t let anyone access your port other than the infusion folks. You’ll likely have at least one ER visit, and they may ask if you want the IV that they will inevitably want to give you hooked up to your port. Unless they give you a really good reason, AND they have the appropriate equipment for port access – when the infusion folks hook you up the first time, you’ll know what I mean, it’s specialized equipment – tell them NO. Chemo will make you an infection risk, and your port is plugged directly into a heart vessel. And frankly the ER is just not an infection-free zone.
Infusions
Infusions take much longer than you think. They do one drug at a time and the infusion rate is slow for the first one. This is so they can tell which drug it is if you have a reaction, and ease your body into accepting the chemo. The first one will be a long day. They’re explaining everything to you, you’re hyper-vigilant watching for all of the infusion reaction signs they tell you about… it’s just a really long day.
Tell the nurses right away if you start to feel weird, or start to have any of the symptoms they told you about, even if you’re not sure. The nurses are old hands at this, and they would much rather have you repeatedly ask about things that turn out to be nothing, than have something bad happen because you don’t want to bother them unnecessarily.
Have a good breakfast. The pharmacist and all of the nurses said to start infusion days with as good a breakfast as you can manage. My husband and sister and I got into a routine of stopping to grab breakfast before I went to the infusion center. This got harder to manage in later rounds, but definitely eat a good breakfast before your first one. It’s going to be a long day, and you don’t need to start out hungry.
Use the lidocaine cream. My oncologist gave me a cream to put on the port site an hour before my infusion appointment. This made the pain of port access pretty much a non-event. I definitely recommend using it. If you forget, they can give you a local anesthetic before they access the port, but locals burn going in, so yeah, use the cream.
Bring stuff to do. You’re going to be in the chair for a long time, so bring something to read or watch or play or knit or whatever. And bring a variety, because you may decide that whatever it was isn’t going to hold your attention after all.
Bring a friend. Most infusion facilities will let you have one visitor, sometimes two in the larger facilities. Infusion days are long and a bit lonely, because no one can do it for you, but having a friend along can make the day a little better. If you do bring a friend, make sure they have stuff to occupy themselves too.
Food and drink. My infusion center had snacks and drinks available, and served lunch, but you’ll want to ask about yours. Again, you’re going to be there all day. My sister ended up bringing me whatever takeout I thought I could manage, which turned out to be kind of awesome.
Gum. The stuff they use to flush your port between drugs can cause you to have a funny taste or smell. Not bad, exactly, but sharp. It’s very brief, but it bothers some folks. Chewing gum while they do it can mask it entirely. Also, some of the drugs themselves can make a nasty taste in your mouth, like you’re sucking on pennies. Gum can help with that too.
Neulasta
Neulasta is a medication, usually an injection, that they administer 24 hours after your infusion. It’s a “blood builder” and can help mitigate the worst of the blood cell issues that follow every chemo infusion. It can be the difference between your immune system completely tanking 7-10 days after the infusion, and your immune system being somewhat depressed during that time. Talk to your doctor about the benefits, for me it seemed like a good option.
It is not side effect free. Most people complain about muscle and bone pain. I had little muscle spasms, like small electrical shocks. Oddly, the thing that works best to treat this is Claritin.
They may or may not tell you to pre-medicate with Claritin. The thing that worked best for me was to start taking Claritin the day BEFORE the infusion – that is, two days before the Neulasta shot – then once a day every day until 3 or 4 days after the Neulasta shot. This took my reaction to it from utter misery to vague discomfort.
Your Mouth
The tissues in your mouth are going to be taking a beating during chemo. They will feel thin and delicate, and since your ability to heal is also taking a hit at the same time, any sore that develops will take longer to heal. So, it’s really important to take care of them, right from the start.
Biotene. The oncology folks will probably give you a DIY recipe for a mouth rinse – baking soda, salt, water – and for some folks it probably does just fine. I tried to use it for the first round and ended up with all kinds of sores and oral thrush. It just wasn’t enough for me. For the second round, I got a bottle of Biotene, rinsed with it 5 times a day – morning, after each meal, bedtime – and never had another problem with mouth sores.
My only beef with Biotene is that it doesn’t come with a little measure-y cup thing, and swigging from the bottle always gives me too little or too much. So, filch a cup thing from a bottle of cough syrup, or use a shot glass. It may seem like a little thing, but during my later rounds of chemo I had to tread really carefully around my gag reflex.
Soft-bristle toothbrush. Again, your mouth tissues are going to take a beating, and during the later rounds just brushing your teeth can feel like you’re sanding your gums. So, get a toothbrush with nice soft bristles and give them a break.
Flossing. If you already floss, keep flossing, but… 7-10 days after your infusion the blood side effects hit. You’ll be more likely to bleed, and your immune system will be less able to cope with infection. You’re flossing to remove bacteria from between your teeth and gums, and if you bleed, that bacteria has a direct route into your bloodstream. So first, get yourself some kinder floss, like Glide, that isn’t quite as likely to cut your gums. Next, don’t get in too much of a hurry, take a tiny bit more time and you’ll be less likely to cut your gums. And last, if you start bleeding, stop flossing until the danger period has passed, and then start again.
Taste, Eating, and Drinking
Yeah, buckle up. The effects of the chemo on my taste buds and my ability to eat and drink were probably the most pervasively annoying things I had to deal throughout my chemo experience. Sometimes your mouth tastes like you’re sucking on a penny. Sometimes trying to swallow water makes you gag. Sometimes something that you were able to eat no problem the last round, now makes you sick when you smell it. And sometimes you can’t taste some of the ingredients in a dish but you can taste others, so something you’re utterly familiar with will taste bizarre. I couldn’t taste salt at all by the 4th round, and let me tell you, Christmas ham without being able to taste salt is kind of gross. By the end, the only kind of food that tasted remotely like it should was Mexican food, probably because it’s not as salt-dependent.
They’re going to give you a bunch of nutritional information, and a long list of things to eat if you are experiencing particular side effects. And you should certainly take that information into consideration, especially if you’re looking for ideas. But all of that stuff boils down to one thing… Figure out what you can tolerate on that particular day, during that particular round, and eat that. If the only thing you can choke down that day is ice cream, then eat ice cream. 🙂
Things to have on hand. Here is a list of things it turned out to be beneficial for me to have on hand:
Vanilla ice cream – for those days you can’t choke down anything else.
Carnation instant breakfast – to sprinkle on the ice cream for a tiny bit of nutrition
Paper bowls – this was mostly for portion control. They will tell you that smaller meals more often will suit your fragile stomach better. Also, I found it extremely demoralizing to be unable to finish what I put on my plate. The paper bowl gave me a smaller target portion, and if it turned out I could eat more, I could always get more.
Juice – I found it helpful, especially during later rounds when I couldn’t tolerate water, to have small juice bottles in the fridge. They were 6, or maybe 8 oz, which turned out to be a small enough portion that I could just drink it, instead of sipping away at it.
Applesauce cups – again, something I could grab that was a small amount.
Eating. You’re going to need to experiment a bit to see what foods/drinks you can tolerate. For me during the first round it was tortillas with a bit of melted cheese on them. Just see what you can and can’t tolerate, and don’t get discouraged.
Drinking. My gag reflex became a huge issue toward the end. I couldn’t swallow water at one point, but it turned out that apple juice was okay. And then apple juice was a no-go, but cranapple was fine. The important thing is to make sure you’re getting the liquid you need, so if something isn’t working well, try something else.
Smoothies. One thing I ended up doing is having a smoothie every morning (1 cup OJ, big handful of baby spinach, 1 cup frozen grapes, 1/2 banana, layered in that order — it’s a terrifying color of green, but it tastes amazing and I swear there is no hint of spinach whatsoever). This gave me something tasty that was pretty healthy and more varied than I was getting otherwise. I highly recommend this.
Don’t stock up. What I mean by this is that what tastes good to you during one round, may taste disgusting to you during the next round. So if mac and cheese is your go-to food in your second round, don’t get a whole bunch of mac and cheese makings in preparation for your third round, because you may not even be able to be in the same room with it. Have it on hand, certainly, because it might be okay, but don’t go overboard.
Your Digestive System
Your digestive system is going to take a beating as well. If you read the rest of this blog, you saw I spent a lot of time talking about diarrhea. Some people actually get constipated from chemo. The best advice I have is to prepare ahead of time, make sure you stay on top of the symptoms, and ride it out.
Before your first infusion, get some Immodium, and a laxative. If symptoms develop in one direction or the other, take the appropriate medication. If it’s diarrhea, your biggest challenge will be staying ahead of the dehydration, so drink more than you normally would. This will get harder as you progress through your treatment, so small amounts of liquid many times a day will be key.
In either case, if your symptoms are not being moderated by the over the counter meds, TALK TO YOUR DOCTOR. They can give you stronger meds. You DO NOT want to end up in the ER getting IV fluids or being treated for constipation. You just don’t. Stay on top of it.
Gas. During the first 48 hours after infusion I got really gassy. So much burping, I can’t even tell you, and when I would go to bed, I’d wake up nauseous because of the gas buildup in my stomach. I highly recommend having some Gas-X on hand. It will make sleeping much more comfortable.
Nausea. You will get it. They will likely give you a med to take at the first sign of nausea, and another “break through” nausea med to take if the first one doesn’t take care of it. What they say “first sign of nausea”, what they mean is the very first moment you think “ooh, I don’t think I feel good”. DO NOT wait until “oh no, I think I’m going to throw up”. The pills have to stay in your system in order to work.
By my second round of chemo, I was taking the base nausea med on a schedule for the first few days — i.e., it said I could take them once every 8 hours, so I did — and by the last round I was taking them on a schedule for the first 10 days. So, base med on a schedule, and then I carried the breakthrough nausea med everywhere I went. This system worked for me, and once I started it I never actually threw up. And honestly, you’re miserable enough, why add kneeling in front of the toilet to it?
Diarrhea and Dehydration. I had serious diarrhea throughout my chemo experience. My strategy was to try to keep it manageable. Here’s what I mean by manageable: 1) I didn’t want it to get so bad I couldn’t keep ahead of the dehydration; 2) I didn’t want the cramping to get so bad I couldn’t go places; 3) I didn’t want the surprise urgent need to go to get bad enough I had trouble making it to the bathroom; and, 4) I didn’t want to have to buy new underwear every week. Which is not to say I didn’t have to get new underwear at all, just not every week. 🙂
I started out taking Immodium, then taking it on a schedule, and when that stopped working well enough — remember what I said about the effects of chemo being cumulative? — the docs gave me a prescription med. When that stopped working well enough, the doc had me alternate the Immodium and the prescription med.
For the dehydration? I just kept drinking. Water, juice, gatorade, tea, pedialyte (I recommend the unflavored mixed with whatever juice you can handle at the time).
Keep a trash bag on the back of your toilet. If you’re unlucky enough to be experiencing diarrhea and nausea at the same time, always always ALWAYS put your butt on the toilet and throw up in the bag. Trust me on this, I learned it the hard way.
Skin Care
Chemo does a number on your skin. It becomes dry and fragile, particularly the hands and feet. Cracks in the cuticles become a problem, painful and an infection risk. Finding a good lotion that has either no smell, or one you can tolerate, is important. If you find that the lotion isn’t cutting it anymore, try some coconut oil, the real stuff that’s solid at room temperature. I was able to keep the cracking mostly under control with coconut oil.
Smells
I’ve always been a bit sensitive to smells, but during chemo it got ridiculous. I wasn’t able to be around cooking meat, and chemicals, or even baby oil, would drive me right out of the room and onto a different floor of my house. Mostly, it’s something you just have to get used to, although if it’s something you have to be around, you might try some gum.
Fatigue
I know I mentioned it before, but I want to go more in depth. You know how when you’re tired, you just kind of push through it, gut it out, and do what you need to do. That part of your life is over, at least for the next year or so. Aside from the effects of chemo on your red blood cells that I mentioned earlier, chemo has a serious impact on every system in your body. You will no longer have the reserves you used to call on to push through. You may be able to do laundry, or whatever, for 30 minutes, and then have to go sit down for an hour or so. This is normal.
What isn’t normal is, for example, going out to breakfast, coming straight back home, going upstairs to get something, and winding up taking a nap for 7 hours. That kind of fatigue you need to tell your doctor about, because it may be a deficiency in one mineral or another. In that specific example, it turned out I had low potassium.
Wrap Up
In the end, all I can really tell you is to be kind to yourself. Let people help you to whatever extent they can, give you a ride, bring you dinner, clean, etc. No one can go through this for you, but letting people help can make it that little bit easier. And finally, you can do this. Chemo is misery, but it is short-term misery and you will get through it.
If you have questions, feel free to ask. Thanks for listening.
Lisa Has Cancer 