June 23rd, 2016
| Survivor: Gestational Trophoblastic Tumor
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?!
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!
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.
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.
21. Emotional Rollercoaster
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.
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