“We are recommending chemotherapy...”
Never in a million years did I think I’d hear those words directed at little ol’ me. I’m sure you feel the same. Shocked, scared, disappointed the pathology results didn’t come back with better news. How can this be happening?
I’m a numbers-driven person, so if you put a probability chart in front of me that says I have a 1 in 3 chance of the cancer coming back within 10 years vs a single-digit risk by doing treatment... of course I’m going to go for it!
I imagine you’re right there with me, so here’s what to expect based on experiences from myself and others.
What is Chemotherapy? How Does it Work?
Chemotherapy (a.k.a. chemo) is a class of drugs that are administered intravenously — e.g. through an IV or a port, orally, or sometimes via a shot depending on the dosage and condition being treated.
The exact cocktail or brand that is prescribed by your physician (and resulting side effects) depend on the type of cancer you have, your height and weight and your body’s individual response.
How it works is by arresting the development of rapidly dividing cells in your body — both the cancerous ones and the “normal” ones (examples include hair, skin, nails, etc). There is no way for the drug to know which cells are which, so while you are undergoing treatment, both will be impacted. Most side effects are reversible and will resolve once the treatments are over — even if it may not feel like it when you’re in it.
Chemo is administered in multiple “rounds” or “cycles.” The exact number and timing between rounds will depend on the research/supporting data known to treat your unique situation. You will be heavily monitored between rounds to measure how your body responds to treatment.
With each round, your white and red blood cell counts may go down, thereby compromising your immune system and increasing your risk of infection. There are 3 distinct phases in the cycle. The exact number of days varies by drug, so a range is represented here:
- Onset - 4-7 days- The time it takes for the chemo to take its full effect
- Nadir - 5-14 days- Meaning low point, nadir is the time between cycles when you experience low blood counts
- Recovery - 21 days- The point in time where side effects will have decreased significantly
It's important to keep track of when your “nadir” will occur so you are aware of your low immunity window and take the necessary precautions (i.e. avoiding crowds and public transportation, wearing a mask, using hand sanitizer and washing hands regularly).
Sound familiar? We’ve gotten pretty used to this behavior as a result of the pandemic , and the same protocols apply here —even more so.
Pro tip: Mark your low immunity window on your calendar and share with family so all are aware of the timing when extra care should be taken.
When/Why/Who Gets Chemo
Most patients will fall into one of two camps:
- With earlier stage diagnoses, your treatment team will operate first to remove the cancer, test the tissue and then prescribe chemo if the pathology results (confirmed by a Mammaprint or Oncotype Score test) indicate a high risk of recurrence (like in my case). This tends to be the case in younger women and in hormone-driven cases.
- For later stage diagnoses, chemotherapy is prescribed as a first course of action to reduce the size of existing tumors (before operating) or to stop the spread to other parts of the body if it’s already traveled to the lymph nodes.
Preparing for Treatment
Your doctor will have you:
1. Stop taking most vitamins, herbs or other over-the-counter supplements to avoid any unintended interactions.
Your oncology staff will give you a list of things to avoid (some examples include Vitamin C, E). If you haven’t received this, ask for it.
2. Get a port…maybe.
Depending on the number of rounds prescribed, you may or may not need to get a port. Also, certain chemotherapies can only be given via port and not through smaller veins due to the risk of damage from chemo leaking into the surrounding tissues. Other reasons could be having poor or difficult veins to place IVs. There are pros and cons of getting one, so you must weigh the options given your individual circumstances.
What’s a port? A chemo port is a small, implantable reservoir (surgically placed under the skin) with a thin silicone tube that attaches to a large vein in the neck, arm, chest, or groin. The main advantage of this vein-access device is that chemotherapy medications can be delivered directly into the port rather than a vein and for blood draws, eliminating the need for needle sticks. For more information on ports, visit our Ports 101 article.
3. Start taking oral medications (pre-medications) at home (such as corticosteroids).
This may begin the day before treatment and continue through day 2 to lessen the chance of an allergic reaction and side effects. Not all patients will be prescribed this as part of their chemo regimen. If applicable, know that the steroid will most likely cause insomnia so if that happens to you, try to relax and not worry about it too much (I know, easier said than done).
Other Considerations for Preparing
Meal Planning and Grocery Shopping
It’s a good idea to meet with the nutritionist at your cancer center before you start treatment so you are aware of the foods to avoid during treatment (e.g. grapefruit, turmeric, sushi, undercooked meats, and more), your protein needs, good snacks, etc.
It's also a great idea to do any grocery shopping a day or two before your treatment so you don’t have to stress about finding the right foods once you are home. You will also want to stock up on plenty of liquids as hydration is incredibly important after an infusion.
Some good options are bottled water brands like:
- Smart H20
- Essentia electrolyte water
- Gatorade (diluted — 1 part Gatorade, 4 parts water)
- Coconut water
- Distilled water is also a great option, especially if you’re experiencing a metallic taste in your mouth (common side effect).
Avoid sugary drinks and orange juice as citrus can increase your chance of getting mouth sores — I learned this the hard way. Ginger candies, chews or tea are also good options to have at home in case nausea strikes.
What to Eat on Treatment Day
On the day of your treatment, you should eat a normal healthy meal — you’ll be at the hospital for several hours, so it's a good idea to bring your own snacks (ginger candies are a good idea too) and a couple large bottles of water of your own.
Other things to consider packing in a goodie bag are ways to entertain yourself when the wifi is iffy–magazines, crossword puzzles, and even cards.
Don’t forget chapstick and hand lotion. Maybe an essential oil roller with a calming scent if you need it (and you’re not sensitive to smells) — or a lucky rabbit’s foot! Do people still have those?
What to Wear to Treatment
Hospitals keep their infusion centers very cold, so dress in layers! You’ll want to wear comfortable pants such as leggings or sweats and sneakers. For the top, wear a comfy bra (or none at all) and consider wearing a layering tank under your shirt, sweatshirt and jacket. For stress-free access to your IV or chemo port, try a sweatshirt with openings designed specifically for this scenario—we have a great one by Patch 10. Check out our complete edit of comfy and cute infusion day essentials here.
Pro tip: Bring a cozy fleece blanket from home for extra comfort.
The infusion itself doesn’t take too long; generally 90 minutes to 2 hours for some regimens. Others could be longer depending on how many and the type of chemotherapies that are in your regimen.
But expect to be there for at least a half day as they need time before treatment to run blood work, get your IV in place, and administer preventative antibiotics/antihistamines, which help to lessen your chance of an adverse reaction, and preparation of the chemotherapy.
If you choose to do cold capping or scalp cooling therapy to prevent hair loss, your treatment days will be longer, generally 5-12 hours, depending on the system you use. If that sounds like a long day, it is. But for some patients, it's time well spent and can have up to an 80% success rate.
You cannot drive yourself home from treatment if you receive certain medications that can make you drowsy, so plan accordingly.
The day of treatment, you will be tired, so you should go directly home and climb in bed. The next day you will still be functional as the steroids have you pumped up—so if you need to get some stuff done, go for it.
You will most likely be prescribed a drug such as Neulasta to stimulate the production of white blood cells and thereby lessen the chance of an infection post treatment. This drug is administered the day after your infusion and can be taken at home.
If so, your nurses will send you home with an on-body device that delivers the shot and is programmed for exactly 27 hours post-treatment. Some practices may prefer to administer the drug in person so you may need to return to the infusion center the next day for this and possibly fluids.
If you do take Neulasta, ask your nurses about taking Claritin for bone pain (start 2 days before and continue for 5 days after treatment).
Consider getting acupuncture the day before or after your infusion. It can help significantly lessen the severity of the side effects. I didn’t know about this until my second cycle and after confirming with my physician that it was safe, I tried it. I definitely noticed a difference vs. the first round without the acupuncture and therefore continued throughout the course of my treatment.
Day 3 and day 4 are the peak days where you will feel the worst. Plan to stay home on these days—you will feel like you have a very bad flu. Do not plan any social activities. Your emotions could be highly erratic. You could be experiencing bone pain. This is all normal.
Note: For some patients, peak days are 1 and 2. You will know how your body responds after the first round. In my experience, each round was a little different so just listen to your body.
Don’t forget to hydrate! It is recommended you drink a minimum of 8-10 glasses of fluid per day, or half your body weight in ounces, for a week following your infusion. Depending on your individual response, type of chemo and climate, you may require more to help flush the chemo, maintain kidney function and reduce dehydration. And remember, you can get water from fruits, salads and broths too so you have options.
If you have severe fatigue or difficulty eating, some providers will recommend coming in between treatments for additional IV fluids. Check with your nursing staff to see if this would be appropriate for you.
Exercise Can Help
You might be surprised to learn that not only can you exercise during chemo, but it actually helps you recover more quickly and combat fatigue. Push yourself to keep moving but be sure to listen to your body. Take regular walks, do light yoga/stretching or ride a stationary bike at home.
Avoid working out at a public gym or indoor fitness studio since your immune system will be compromised. And if you do exercise outside, remember to cover up as you will be more sensitive to the sun.
Because chemo is designed uniquely for each individual and it is known that long periods of exposure to even small amounts for people without cancer can damage cells, it is recommended to take precautions. Most chemo drugs are removed from the body through urine, vomit, and stool for up to 72 hours.
Recommended precautions include:
- Avoid sharing a restroom at home to prevent the accidental transmission of the chemo to any other persons in your household (if possible). At a minimum, close the toilet lid and flush twice after each use — and disinfect the toilet and faucet handles regularly.
- Use condoms for up to 48 hours following chemo.
- Avoiding sick people or those who have been around sick people, or those who have recently had vaccines.
- Caregivers should use doubled latex gloves if handling soiled linens within 72 hours of the patient receiving chemo and should also wash soiled linens separately, twice in hot water cycle.
Side effects vary greatly depending on the particular cocktail you are prescribed and your own individual reaction. Your physician will give you a packet of information listing all possible side effects. It's an intimidating list, but know you won’t get them all; in fact, you’ll probably only get a few.
It's best not to try to predict what will happen to you. Time will tell, and you’ll only add more stress thinking about the possibilities.
Stay in close contact with your nursing staff at the oncologists office; they are there to support you if you are having trouble with side effects. They have many tools to help mitigate side effects like neuropathy, bone pain, mouth sores, etc.
Be sure to contact your health provider immediately if you experience a fever of 100.4 degrees. Fever and/or chills can be a possible sign of infection.
Don’t forget to treat yourself with kindness and compassion. It's completely normal to experience emotions that are out of character for you.
If this happens, try to remind yourself that it's “the drugs” and it will pass. Tomorrow is a new day and you can do this.
Pro Tip: Some cancer centers have a supportive care team including a counselor or therapist who specialize in supporting chemo patients. Taking advantage of these services can be very helpful. Check with your practice to see what services are available to you.