Top 10 Tips for Chemo That Doctors May Forget to Tell You

As I finished my cancer treatments, I kept thinking about some aspects of caring for yourself during chemo that might get overlooked. It’s not that the doctors don’t know these things could happen, but they have a lot to tell you. Their first priority is to make sure you know the signs of more dangerous side effects, so that’s what they emphasize. They also don’t know in the beginning what side effects you might have. Why bombard you with information you may not need?

I can’t cover everything either, but here are my top ten tips that I feel get overlooked or forgotten. Or that I think are important enough to say again. I’m going to count down to the most important ones, starting with number 10.

10. Set up a place to nap before treatments start.

In most cases, chemotherapy involves injecting medication into the veins to target rapidly replicating cells. Most chemo drugs cannot tell cancer cells from other fast growing cells (like hair). As a result, the body has a lot to do after chemotherapy: replace cells, get rid of dead cells, process the chemicals, etc. That’s a lot of work, and it takes a lot of energy.

Even if you’re in peak physical condition, you may find that yourself extremely tired on the days following treatment. You may need frequent naps in between activities. If your bed is readily available, that would work. A recliner chair or a couch is also good, especially as you get further from your treatment and need to nap less often (I also recommend sleep masks).

Whatever location you chose, you will likely want to have a cover for it that is easily washable. Chemo has a distinctive smell, and since a side effect is increased sensitivity to smell, you will want to wash that smell out once the chemo is out of your system

9. Use the anti-nausea meds the way the doctor tells you to.

You may be prescribed multiple medications for anti-nausea before you even start treatments. If you look them up, you will find that they are not traditional anti-nausea meds. Their anti-nausea properties are unique to chemotherapy (Believe me, they work).

Since this use of the medication is different from the drug descriptions pharmacists have, the pharmacy may say to take the drugs differently than the doctor did. Follow what the doctor said. If you really need to double check, consult a different cancer doctor from a different hospital.

If the doctor gives you two prescriptions and says to alternate them every four hours, he or she means it. Alternating lets you take medication more often and stay ahead of the nausea. Don’t wait until you feel nausea to take the meds. By then, it may be too late, and you will already have thrown up (and may not be able to keep the meds down). You will learn after the first few treatments when to expect the nausea. On those days, take the meds as prescribed, and you will have far fewer problems with nausea.

8. Eat yogurt with live cultures and/or take probiotics.

Your body might handle it fine the first few times, but processing the chemo can kill the healthy bacteria in your body. In you lose enough, you’ll get digestive problems (in addition to yeast infections and urinary tract infections).

Some of the most common side effects of chemo are nausea, vomiting, diarrhea, constipation, and acid reflux. Clearly, the digestive system takes a hard hit. Eating yogurt or probiotics can help it recover and can prevent or reduce some of these symptoms – I did not experience all of them, but his definitely can help the acid reflux, and it can also help with the issues mentioned in number 7.

Most doctors have nutrition information available, too, if this becomes a problem.

7. Get bathroom wipes and use them after treatments.

Invest in some wipes, preferably ph balancing, and use them at least every other time you go to the bathroom when the chemo is passing through your system. The medication can kill the bacteria around genitals the same way it kills the bacteria within your digestive system. Again, when the good bacteria is reduced, bad bacteria can get a foothold.

Having a yeast infection or urinary tract infection on top of chemotherapy is not fun (you do not want to be on antibiotics on top of everything else if you can help it). Using wipes removes more of the chemical than regular toilet paper, and the ph balancing (you may want a ph balancing wash, as well) will help your system recover.

The longer you are on treatment, the more help your body will need to recover, so start before it becomes a problem. Even if you don’t worry about the ph balance, using the wipes will help keep harsh chemicals from building up on tender flesh. Trust me when I say you will be much more comfortable. And why deal with more discomfort than you need to?

6. Pay attention if you start developing aversions.

Even if you do not get extremely sick from the chemo, your body may take a subconscious dislike to it. I think of it like when you order a specific food, get food poisoning, and get sick whenever you smell that food after that. It’s an ancient defense mechanism where your body smells or tastes something it associates with danger of illness, and it makes you sick to try to avoid the illness.

Well, chemo makes the body work pretty hard. It puts a lot of stress on the system, and chemo patients can develop smell aversions to smells associated with the treatment. One of the most common aversions is to the smell of the treatment area. Your body knows it is getting chemo and can make you sick before treatments start. You can also get aversions to things you eat regularly while on chemo.

Planning when you eat makes a big difference. Many hospitals will be glad to provide you with food. That’s fine, but if you start feeling sick whenever you think of a food you often eat before treatment, you’ve probably developed a taste aversion. You may want to avoid eating your favorite foods right before chemo. The same is true for wearing your favorite perfume. The main idea is that you do not want your body to associate that taste or smell with chemotherapy.

If prevention doesn’t help, medications might. Some smells are unavoidable (like the chemo itself, rubbing alcohol, etc). Again, the doctors have dealt with it before and will do all they can – so tell them!

5. Tell the doctor or nurse if you have increased sensitivity to taste or smell.

If your sense of smell or taste suddenly becomes much more acute after a treatment (making eating and drinking difficult), tell your doctor.

After about my fourth treatment, my sense of smell became so acute that drinking water was difficult because it smelled weird or wrong – even if I got a new glass and rinsed it before filling it. I assumed that it was an expected side effect and that nothing could be done about it. I was wrong.

When the doctor asked if anything else was new, I mentioned it offhandedly, not expecting anything to come of it. When he heard that, my doctor added an anti-nausea drip (iv) to the medications I was given before starting the chemo treatment. I didn’t see how more medication before the treatment would stop something that didn’t happen until days after the treatment, but it did.

I have not had this problem since, and I’ve had about 8 more treatments. I won’t say that doctors can prevent all side effects or even that the side effects may not come back as the treatment continues (and has cumulative effects on the body), but don’t assume that the doctor can’t help. It’s always better to ask and give the doctor a chance to help. That’s what you’re paying them for!

4. Don’t plan things for right after treatments.

Do not schedule anything important after your chemo. Most nurses work hard to reassure you and make your treatment as safe and painless as possible, but they cannot control how quickly the pharmacy will make your meds. They cannot make the veins on your arms bigger and able to take the treatment faster.

The chemo could take 5 hours; it could take 10 hours (including a lot of sit-around-and-wait time). You don’t know. The nurses don’t know. Buying a plane ticket for an hour after your chemo is supposed to end adds unnecessary stress to you and your nurses. Rushing them isn’t a good way to assure a good treatment. Plan to take your time.

3. Do not be afraid to get a port.

Like I mentioned, treatment may be difficult with smaller veins. Some of that depends on what treatment you are on and what chemo you are getting, but on the whole, it can cause discomfort or even vein issues that can last after treatment. Some people’s veins are big and strong enough that they do most of their treatments by iv. Others are not.

If the nurses working on you have trouble and recommend a port (or pick line), talk to the doctor about getting the port in soon. A port is an access point for drawing blood and injecting the chemo. From that access point, a catheter runs into a large vein directly (often the jugular). The surgery to put it in only took about 10 minutes, and they could use it a week later.

The treatments went much faster and smoother after that. The side effects and discomfort around the veins were not an issue with the port, which meant a faster recovery and less arm sensitivity afterwards.

2. Carry an updated medication list in your wallet or purse.

While medical staff does their best to keep an up-to-date account of your medications and treatments, it never hurts to have the information with you. That way, if there is any confusion, you have the most up-to-date answer with you.

It can help at the doctor when your normal doctor is on vacation and the temporary doctor is trying to go off of notes. It can help at the pharmacy when the dose has changed for a medication, but the pharmacy has two active prescriptions for you (and isn’t sure which one you need). In the case of an emergency, it can also help at the ER.

The point is that it is useful information, but with all those complicated names, it can be hard to remember. Make life easier for yourself and carry a list.

1. If something changes, tell your doctor.

To me, this is a no-brainer. If something strange and unusual happens, call and let the doctor know. They may have you monitor it and call back the next day. They may have you come in so that they can look at it if it’s something more serious. They may send you a new prescription. They may send you to urgent care. I have had every single one of these happen after a call to update them on a new symptom.

If you’re not sure if the change is important enough to call, you can look at the paperwork they give you for each medication. In that paperwork, there is a list of symptoms that says to call the doctor if you get any one of them. But if the symptom worries you, go ahead and call.

Personally, I would rather ask the staff and find out it’s not worth worrying about than not ask, worry until my next appointment, then find out it was something they would’ve wanted to see.

Use your best judgment, but don’t by shy about using this resource. There is generally a line just for patient calls, and the nurses know where they can direct you and whether it’s a question for the nurse practitioner or the doctor. For you to get the best care, the doctors need to know what is going on. They can’t make adjustments to treat or prevent problems if they don’t know about them.

 

That’s the list. I hope it helps and wish you all the best of luck!

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