When you hear the word chemo, what are the first side effects that come to mind? The most commonly known ones are hair loss and nausea with vomiting. But are these all of the side effects of chemotherapy? Not at all! Anyone that has personally gone through it, along with the caregivers, know first-hand the nastiness and depth of chemo side effects.
I learned these firsthand when I was on the aggressive 5 agent cocktail known as ema-co for placental cancer choriocarcinoma from my complete twin molar pregnancy. Depending on the type of chemo, the length and the strength, some may vary from person to person, but below I’ve written out a list of some of the side effects that you may want to be prepared for, based on my experience.
Disclaimer: The list below was compiled based on MY experiences and the experiences of others who I know and have spoken to about these side effects. Everyone is different. Please consult your doctor if you experience any of the side effects below and ask for his or her tips to complement the ones that I've included below. This article is intended to be a way to help you prepare , it is not an end-all be-all list.
1. Hair Loss
Yes, we all know this one - but what many people don't know is that we're talking head hair to entire body hair, gone, from eyelashes to arm hair to the little hairs on your toes, all gone. This makes nice for not having to shave, especially when you're neutropenic! This is one of the hardest side effects for many women.
Scare Prevention: It's important, particularly those around young children, to take scare preventive measures as it's hard for them to grasp the reality. We shaved my hair for the sake of our 4 month old. My 5 yr old cried when seeing my eyelashes and eyebrow hairs fall out. This is a sensitive matter for children.
Head Protection: Head protection is also crucial for scalp exposure to natural elements such as the sun for sunburn and wind for chapped skin.
Re-Growth Pain: Re-growth can be painful, did you know that? Yes! Hair follicles are sensitive to any touch, even the pillowcase, causing pain until the root has reached past a certain length. Keep in mind that hair can also grow back a different color, texture and type such as curly or straight, opposite of what you naturally had, all from the chemo. My color did at first, but eventually went back to my natural color. Some have even experienced new or more gray hair.
2. Nausea and vomiting
This is the second most common side effect and, for many, the most uncomfortable. Today's treatments include the latest anti-nausea/pre-chemo meds like Zofran or Promethazine along with added anti-anxiety meds like Lorazepam for extra comfort. These anti-anxiety meds really did make a difference for me. Once I refused to take them as part of my pre-chemo meds, I quickly found the nausea was much worse and I faced vomiting. I was so uncomfortable and quickly asking for the pre-chemo order back!
Tip: Being relaxed while receiving chemo is important and can make a big difference in nausea and vomiting. This is one of the reasons why anti-anxiety meds are added. These meds should be taken around the clock after an infusion for full benefits possible. You also may want to avoid greasy, spicy and acidic foods as these only aggravate your the stomach lining, increasing the discomfort, as well as take a look into other techniques to combat nausea.
Hydration is vitally important for your body to take in the toxicity while flushing it. Some chemo like Methotrexate, for an example, can damage the liver/kidneys, so being well hydrated helps flush these organs. Being hydrated also helps with stability, balance, and overall health.
Tip: Make sure every infusion, in and outpatient, includes pre-chemo meds and hydration. Drink water around the clock, even through the night, as I had to. Always have a filled glass of water with you, everywhere you go!
Another known and common complaint. Chemo agents like Vincristine and Taxol affect the delicate nerves, causing pain, tingling, loss of feeling, burning, prickles, etc particularly in the feet, toes, fingers and even the tip of the tongue! This makes it even harder to do or complete everyday tasks, affecting way of life. I still suffer from this, though it seems to be healing better as time passes.
Tip: Some patients find themselves wearing gloves to avoid the 'touch pain'. Many people also turn to physical and occupational therapies, as well as acupuncture. As soon as you start to experience it, let your doctor know. Your team may be able to adjust your treatment plan to prevent your symptoms from worsening. Avoid touching and handling things that aggravate your nerves.
5. Neutropenic & Neupagen/Neulasta
Most people associate cancer patients with masks and bald heads. There's a reason that this image is so set in our minds. Chemotherapy destroys not only the cancer cells, but every white cell along the way, therefore lowering or even taking away the patient's immune system, putting them a serious high risk of infection. This is called neutropenia. A simple fingernail cut, scrape, or cough can be lethal. Some patients choose to stay completely away from everyone, including friends and family until their numbers are back up, as I had to. I was neutropenic every other week, after each inpatient chemo regimen so it was crucial to stay away from people, especially with my newborn.
Raw foods should NOT be consumed during this stage because pathogens and germs can be hidden on a raw carrot or apple. Most do not know this! Did you know that there are cases of death from this and not from the cancer itself? Yes, but thankfully, with newest medical research, cancer patients have a drug such as Neupagen or Neulasta that rebuilds white counts and let's their chemo continue without any delay or little delay. The drawbacks? Not only is this a very expensive drug, but causes extreme bone pain as it uses bone marrow to help rebuild the white cells.
Direct visitors, even family, to wear masks and sanitize their hands.
Avoid physical contact with visitors to avoid the passing of germs from clothes and skin to skin.
Chemo also destroys red blood cells, causing anemia. This comes with fast and hard pounding heartbeat, heart palpitations, shortness of breath, dizziness, exertion and fatigue. Blood transfusions are given for patient to continue on with their chemotherapy treatment. The dangers here are also too risky to carry on without needed transfusion. Iron supplements did not work for me. I found myself needing two blood transfusions. Prior to each, I had trouble getting off my bed.
Tip: Let your healthcare team know if you start to experience any of the symptoms, though labs will usually expose low red cells. To help manage the anemia, make sure you eat a well balanced diet, drink plenty of fluids and get enough rest. Let your loved ones know what you are experiencing so that they can prepare for when you may experience dizziness (ie: when you get up from a sitting position)
7. Premature or Full Menopause/Infertility
This applies for both men and women at any age. Just about all chemotherapy agents destroys reproductive glands, and depending on the person, age, chemo, chemo strength and time length, it's a true guessing game, at least for awhile. This is disheartening to younger survivors and those that still wish for children. Those women that face premature menopause are facing a natural milestone in life at an earlier stage. The upside is that not everyone becomes permanently infertile, and some have turned to adoption. I am dealing with premature menopause myself, as are many other women that I know.
Tip: Know your fertility options before you begin treatment. Talk to your doctor about the cost and process of freezing your eggs and weigh all of your choices early on.
8. Bone Pain/Bone Density Loss
This is my personal biggest complaint. Bone pain comes from low or loss of bone density (calcium and vit D), nerve damage, and white cell boosters such as Neulasta. Bone pain can also be from original cancer metastasis or a secondary cancer from the chemo treatment. Some patients even end up with osteoporosis as a result of the bone damage. My doctor put me on a prescription for vitamin D and calcium to help restore and prevent more loss for bone my health.
It's important to have bone pain checked out for maintenance, prevention, and restoring.
Gentle yoga, pilates and swimming are a great workout to help strengthen the body.
Take any prescriptions as ordered.
Eat high calcium foods such as kale, turmeric, mushrooms, etc.
9. Heart Damage/Organ Damage
These organs also include lungs, liver and kidneys. Some chemo is so strong (like mine) that patients are checked after just a few cycle rounds.
Tip: Make sure you have routine checks to check for any damage already taken place. Your team will issue these as they arise.
10. Hearing Loss
Some hearing problems include tinnitus - a constant ringing, roaring, hissing or humming of the ear. This may make it difficult to sleep and concentrate. Mine just begun, averaging a few times per week. I did notice shortly after chemo my overall ear tone dropped down a stage.
Tip: Learn what makes tinnitus worse - some possible triggers include caffeinated drinks alcohol, aspiring and salt. Also consider hearing aids, which may help make sounds clearer.
11. Vision Loss
I noticed my eyesight blurred and dulled after my first inpatient round of ema-co. Some people also experience cataracts, dry eye syndrome, and itchy eyes.
Tip: For vision loss, you may want to consider prescription glasses or other options that your doctor may provide. There are also some ointments that may help alleviate dry eye/itch eye syndrome.
12. Tooth Damage/Mouth Sores
Tooth enamel and root damage is also a side effect and not widely known. Some patients have had teeth loosen, tooth loss, and holes in their teeth along with receding gum lines. Chemo can damage the the entire mouth from the teeth to their roots and gums to mouth sores. Mouth sores are not only painful, but can also cause infection, which is serious when the patient is neutropenic. Even with extra proper oral care can these issues arise and be an ongoing problem. I had a light battle with mouth sores.
Ask for the "special" mouthwash from your oncologist team for mouth sores and oral rinsing.
You can also ask for ice chips or sugar free popsicles to suck on while you are receiving chemotherapy.
Brush teeth lightly to avoid gum irritations.
For tooth damage, be sure to ask your doctor about fluoride treatment during and after radiation treatments. Additionally, to prevent infection and decay, see your dentist early in your treatment. Ask for biotene mouth rinse. It may also be helpful to keep a cup of water nearby at night so anytime you wake up you can swish a sip in your mouth to keep your teeth wet.
13. Nerve Damage/Scarring
Nerve damage and scarring can occur as a result of picc line/ports. A lot of patients need to receive one or the other for infusion, mainly due to small veins. Chemo can literally burn the skin and veins so either one is inserted for avoidance. Nerve damage can happen in both, but the Piccline can cause it from the chest all the way to the toes, as mine did. Consent forms are signed to accept these possible effects. Infections and blood clots are highly likely if not cared for properly by the patient.
Tip: Water must be avoided (showers, full baths) as well as high use of that arm/side of the body to irritation and slippage of device. Each week or infusion requires an oncologist rn to properly clean and change dressings.
14. Extreme Diarrhea
This can be a real issue from extra weight loss to skin sores and tears to dehydration. Diarrhea was a great concern. When I begun Methotrexate with Etoposide and Dactomycin, I faced this right away after first infusion.
Tip: Skin care is vitally important for maintaining care and infection prevention. Warm sitz baths are beneficial, too. One rn told me to eat 1/2 banana every day. It seemed to work and slowly tapered off.
15. Weight Loss/Gain
This is a balancing act because chemotherapy makes you lose weight from the nausea and loss of appetite while the pre-chemo steroids given help you regain what you've lost, even then some. This can be a plus for those that can afford to lose the weight, negative for those entering already thin, while the opposite for the steroids. I had some leftover baby weight as I just had a baby, but ate high calorie foods to help keep some weight on. Weight can shift and change week to week, chemo cycle round to round. This is the reason why each patient is weighed before each infusion, because the fluctuation can affect the chemotherapy strength.
Tip: Your oncologist watches your weight, checking it before each infusion, but you should still keep an eye at home with a scale and how you feel. Seek the oncology or hospital nutritionist to help set a weight and meal plan based on your specific needs and treatment.
16. Severe Head/Jaw Aches
This can be very painful! Some have even said that the hardest pain medication didn't fully take the pain away. I used to get these after every outpatient cycle and it lasted for about 5 days.
Tip: I avoided light and loud noises. I also massaged my jaw and deep scalp rubbing. A lot of the time, I ended up having to take a pain med given to me for my picc-line insertion and thus just tapered the pain.
17. Loss/Change in Taste/Smell
My sense of smell was so strong. I could smell the lingering smell of the cafeteria lasagna coming through the halls. I rushed to close my door before it got worse because it made me vomit, literally. I also lost taste for most foods. This dissipated a few months after chemo and now I love peas! Who knew?!
Tip: Avoid smells that turn your stomach to prevent nausea and vomiting. Be prepared to be disappointed in some food’s taste while exploring possible new favored likes after chemotherapy has finished. You'll be surprised!
18. Dependence On Anti-Anxiety/Steroids
Yes, this is true. Patients that are given chemo weekly or even bi-monthly are given these pre-chemo meds more often than others with different time treatments. Those patients that need anxiety meds to help their chemo journey are likely to have some dependence as well. This becomes a vicious cycle even without the patient knowing!
Tip: Be aware of this possibility, because it very well could happen without you even realizing. Talk to your doctor about any symptoms of dependency and ways to break free from it. I turned to essential oils for anxiety, faith and prayer.
19. Chemo Brain
This is a newer term defined as “Memory loss, particularly short term memory loss, as a result of chemotherapy.” Chemo brain becoming more accepted as a real side effect, as more and more survivors begin to speak out about it. Some describe it as brain fog or difficulty staying concentrated on one particular thing. Some are affected by efficient multi-tasking or lack of quick thinking. While studies are ongoing in this subject, some suggest this clears within 2 years post-chemo; some speculate otherwise. Chemo brain can often feel like the early stages of Alzheimer's or a stage of craziness, especially for younger cancer patients, though acceptance is often observed. I still suffer from this, mainly short-term at times and multi-tasking means missing a few in-between.
Tip: Practice brain exercises, like puzzles and quizzes. Move your body with exercise and practices such as yoga. Track the details of your memory problems. Get a healthy amount of sleep. Don’t try to multitask, focus on one thing at a time. Share this post, so that your loved ones really understand:
Let's not forget about the "other" side effects…
It's not all about the physical side effects. Healing not only includes physical but mental, emotional, spiritual and even sexual, particularly those with gynecological cancers. No price can be put on time and the individuality each one needs to heal. Patience is of virtue here and often learned along the way.
20. Financial Stress
Some people have to travel hours and miles for their treatments. Some treatments include inpatient hospital stay. My treatment consisted of 3-4 days inpatient every other week, followed by outpatient in between, 2 hours one way. This can drain the pocket book, calendar, and be exhausting. Treatment is expensive even if your medical insurance picks up the tab. There are meal expenses, co-pays, travel expenses, sitter expenses, and priceless time expense. It all adds up. My church provided meals for my family through their women's group after nondescript these were priceless to us.
Tip: Planning ahead will help you identify areas where you can cut costs. Are a lot of people offering to cook you dinner? Don’t be afraid to accept those offers and even adjust them. Maybe you don’t need dinner because you’re constantly traveling, but you could use some pre-made lunches to eat on your way. Be open about what you need from those who are offering to help. Seek out friends, family, church members other cancer support members whether online or in your community.
Tip: Talk about what you’re going through and connect with other people who can understand and help you along the way. Accept that you have the right to feel emotional and be vocal with your loved ones that just because treatment is over, doesn’t mean cancer is over.
This list is just the tip of the iceberg when it comes to everything that cancer does to the mind, body and soul. I wanted to compile my experiences in hopes that someone who is recently diagnosed can come across it, and read, from a survivor’s perspective, and in a language that we can all understand, what it is that you may have ahead of you. I know some of it may be scary, and overwhelming, but the best thing that you can do is to try and take control of what’s to come, by arming yourself with the knowledge, resources and people who can truly help.
What else did you experience? Share your side effects in the comments below.
Cindy Lupica is a wife, mother of four, and survivor and advocate for Choriocarcinoma & Molar Pregnancy Awareness. She is also an advocate for the Choriocarcinoma Research Fund at Brigham & Women's Hospital, where you can donate to here. You can connect with her on IHC under the username pregnancycancer_twinmolarpregnancy.