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post-treatment long term effects info and resources
(FORCLOSURE: Before you read this article a little FYI on the following medical terms and research. When writing, I usually use a lot of my own knowledge/opinion but when it comes to the medical field, I like to know exactly what I am talking about. I hope that my more methodical blogs provide some knowledge and suggestions all in one place (instead of weeding through the internet trying to find what's real and what's not… that’s where I come in, I do hours of lengthy research reading through at least 6-7 valid sources that are recognized by an accredited medical/health related institution, are in some type of reputable medical research journal or study, and/or specific op ed’s that Doctors and other medical professionals write, etc.)
I can vouch for the majority of cancer survivors worldwide (around 32 million in 2025) that many of us suffer late-term effects from cancer treatments that can alter the course of our lives.
The American Cancer Society states that, "you might not think much about late or long-term side effects during cancer treatment. You might be just trying to survive day-to-day, which is a normal response for someone with cancer. But it’s important to know the late and long-term side effects you might experience because of your cancer treatment."
With resources, help from others, and some simple techniques, we can get some relief for ourselves or our loved ones.
If you’re wondering what the difference is between the terms “cancer survivor” and “remission” (which is confusing in itself), this explains it clearly:
*each type of cancer is different and uniquely monitored to determine this*
🎗️"Remission" means that you have no – or fewer – remaining signs or symptoms of cancer. For cancerous brain tumors: either your tumor is gone – known as complete remission – or it has shrunk or shows no signs of growing – known as partial remission. Having your cancer in remission does not mean that you are cured, however. Some cancer cells can remain after treatment; there is a high risk that cancer can return, especially within the first five years. That is why surveillance of your condition is important following treatment.
🎗️ “Survivor” is a status that means you are ready for the post-cancer stage of care, which involves periodic visits to the oncologist for examinations/tests to make sure the cancer has not returned.
"I want to be like a sunflower; so that even on the darkest days I will stand tall and find the sunlight"
What you don't see are things like what I suffer with on a daily basis: debilitating spinal/back pain, extremely weakening and unpredictable neuropathy accompanied by vision blur, intense tension migraines, chronic fatigue syndrome (you can sleep 10 hours and it feels like you slept 4 and feels like you got hit by a truck), osteopenia bone pain, and the plethora of issues from the aftermath of a small stroke. All of which makes it hard to get up out of bed some days. Good days, and bad days.
It’s not about me; I am explaining some of my conditions as an example. Through this blog post my goal is to bring to light to the issue of after-effects of cancer treatments and how debilitating and negative the repercussions of these treatments can be; which follows most patients’ long term. Some experience more severe side effects than others due to different types of chemo, radiation, surgeries, etc. – all of this is what makes us fighters who, unbeknownst to our knowledge, build us into straight warriors.
According to the Leukemia and Lymphoma Society, "Cancer treatments such as chemotherapy and radiation therapy can cause problems with mental functions, such as concentration, memory and the ability to multitask (to keep track of and do different tasks at the same time). These effects are sometimes referred to as "chemo brain" or brain fog."
Especially for most brain cancer survivors, "chemo brain" can be very frusterating. At the age of 35, it's werid but I call it a "senior moment." For my specific brain tumor, I expereince short term memory loss, mild OCD, and a lack of concentration. The good news is that there are ways to improve (not reverse but improve) these and I want to outline some productive strategies regarding this specific topic:
Improving Short-term Memory Loss
1. Regular exercise: boosts the production of neurotransmitters (*a neurotransmitter is a chemical messenger that carries signals between nerve cells, muscle cells, and glands*) and the growth of brain cells and the production of neurotransmitters, enhancing memory. A mix of aerobic (cardio) and strength exercises is best.
2. Eating foods that help memory: (read more on my previous blog)
3. Getting a good night's sleep: believe it or not a simple full night's sleep can improve your memory and cognition. Experts say to aim for seven to nine hours each night. <- now If you’re someone like me who is up late at night trying to solve the world’s problems and overthinking absolutely everything don’t worry I have some good tips for you...
I’m not one to take supplements as a cure-all but this one supplement has helped me immensely with my sleep over the years….Melatonin! I highly recommend this if you are like me and have trouble sleeping or getting a full night of straight uninterrupted sleep. Also, it is not very strong (I take the chewable supplements 3mg) and it doesn’t make me feel that horrible drowsy feeling in the morning like Nyquil does for me. ). The National Center for Complementary and Integrative Health tells us that “Melatonin is a hormone that your brain produces in response to darkness. It helps with the timing of your circadian rhythms (24-hour internal clock) and with sleep overall. Research suggests that melatonin plays other important roles in the body beyond sleep.
4. Doing puzzles/mind-provoking games: now this is a big one for me as I can attest to the significant improvement puzzles and mind-challenging games have increased my short-term memory loss as well as my overall cognitive health. Working on a puzzle or playing a mind-provoking game, improves mental speed and agility and reinforces connections between brain cells; ultimately improving short-term memory.
About 6 months after my last chemotherapy session I started playing on my cell phone a game called “Peak” which is an app ‘designed to push you with short, intense workouts and challenge certain skill sets that concentrate on focus, memory, problem-solving, mental agility, and more.’ This app was designed in collaboration with experts in neuroscience, brain education, and cognitive science. I can thank Professor Bruce E. Wexler, Senior Research Scientist in Psychiatry at Yale School of Medicine, and Professor Sahakian who is the Professor of Clinical Nueropyschoogu at the University of Cambridge for creating this life-changing mobile app that I highly recommend!
I also enjoy doing large jigsaw puzzles and Suduko which for sure is mind-stimulating.
5. Traveling
6. Learning new languages
7. Art
8. Cooking
9. Reading
10. Playing a musical instrument
I’ve noticed over the years that I seem to have better recall since doing some of these things consistently. These all promote the growth of new brain cells and help the brain forge new pathways. Also just be aware of some medications that actually increase brain fog. Some medications include drugs with anti-cholinergic properties including antihistamines (diphenhydramine, Benadryl), some antidepressants, and muscle relaxants
Lessening your Chronic Fatigue
Chronic fatigue syndrome/Myalgic encephalomyelitis also known at CFS/ME is a complicated sleep disorder causes extreme tiredness. Most people diagnoses with this say that sypmtoms tend to worsen with mental or physical activity. Where others mention they try everything for daily energy but nothing helps their chronic fatigue. There are multiple factors that can cause this but for this blog's purpose cancer treatments, which can cause anemia can lower energy levels in general. What we don't fully understand due to lack of research is how cancer treatments like chemotherapy and radiation can trigger and induce this either temporarily or long term.
Some strategies for cancer patients (According to Henry Ford Health):
1. Get To Know Your Limits: The first thing Dr. Rizvi recommends to people who’ve just been diagnosed with chronic fatigue syndrome is to keep a diary. “Record your food, activity and sleep,” she says. “And note whether it was a good day or bad day in terms of your energy level and chronic fatigue symptoms.” Over time, you should start to see patterns and recognize things that make your symptoms either better or worse. Once you have a better sense of your limits, you can begin to structure your life to accommodate them.
“Every day, prioritize what needs to get done,” suggests Dr. Rizvi. “Then see how you can break those tasks up and make time for rest in between.”
2. Make Good Sleep A Priority: It’s a cruel irony that people with chronic fatigue often have trouble getting the restful sleep they need. But better self-care for chronic fatigue syndrome starts with better sleep. Good sleep hygiene is important for everyone, but it’s critical for people with chronic fatigue. Basic rules of sleep hygiene include:
Establishing a consistent schedule of bedtimes and wake-up times
Keeping your bedroom cool, dark and quiet
Limiting alcohol intake in the evening
Not looking at screens (phone, television, tablets) right before bed
Winding down toward bedtime with relaxing rituals (meditation, yoga, journaling, reading, a warm bath)
3. Exercise, But Don’t Overdo It: When you’re struggling to find the energy just to get through your day’s to-do list, exercise is likely a low priority. But when you achieve the right balance of exertion and rest, exercise can actually improve your symptoms.
“Doing some exercise that you enjoy—especially outdoors—can help your mood and even feel invigorating,” says Dr. Rizvi. Most everyone can benefit from relaxing forms of exercise like walking, stretching or gentle yoga.
**It’s important not to overexert yourself when exercising. That can sap your energy and leave you too tired to accomplish other important tasks.**
4. Learn To Say No: Conserving energy and pacing yourself are key to managing life with chronic fatigue. But you may also have to come to terms with simply doing less. “It’s important not to take on too much or spread yourself too thin,” says Dr. Rizvi. Take a good look at your priorities and see which things you can take off your plate. That may mean scaling back work commitments, sitting out some volunteering at your kids’ school or skipping social obligations.
“Don’t put too much expectation on yourself,” says Dr. Rizvi, “and don’t be afraid to say ‘no’ when you need to.”
5. Make Time For Mental Health
CFS can also take a toll on your mental health. “Stress, depression and anxiety often overlap in people who are coping with chronic fatigue,” says Dr. Rizvi. The physical limitations of CFS can impact your relationships and cause more stress. Seeking counseling for your emotional health can help you better cope with your condition. “In some cases, your doctor may recommend anti-depressant medication,” says Dr. Rizvi.
Stress reduction techniques can help manage anxiety and improve mental health.
Some stress techniques include things like:
Acupuncture
Breathing exercises
Massage
Meditation
Yoga
🎗️read more about strategies regarding stress/anxiety during and after your cancer journey on my mind, body, and soul blog
Taking care of your teeth
Due to harsh chemotherapy drugs, you teeth can be drastically affected as it disrupts the healthy balance of bacteria in the mouth by impacting the salivary glands which can lead to a very "dry mouth" making it much easier for bacteria to live and harvest in the mouth; eventually leading to things like gum diseases, tooth decay, mouth sores, and more.
Chemotherapy in the general weakens the immune system which can make it much more difficult for a cancer patient to fight out any type of mouth infection that can damage your teeth.
According to the National Cancer Institute (NIH), Good dental hygiene may help prevent or decrease complications with everyday oral care for cancer patients including keeping the mouth clean and being gentle with the tissue lining the mouth. Some common mouth issues you may experience during or after cancer treatments can be...
Oral Mucositis
Oral mucositis is an inflammation of mucous membranes in the mouth.
Care of mucositis during chemotherapy and radiation therapy includes cleaning the mouth and relieving pain.
Pain
There can be many causes of oral pain in cancer patients.
Oral pain in cancer patients may be caused by the cancer.
Oral pain may be a side effect of treatments.
Certain anticancer drugs can cause oral pain.
Teeth grinding may cause pain in the teeth or jaw muscles.
Pain control helps improve the patient's quality of life.
Infection
Damage to the lining of the mouth and a weakened immune system make it easier for infection to occur.
Infections may be caused by bacteria, a fungus, or a virus.
Bleeding
Bleeding may occur when anticancer drugs make the blood less able to clot.
Most patients can safely brush and floss while blood counts are low.
Dry Mouth
Dry mouth (xerostomia) occurs when the salivary glands don't make enough saliva.
Salivary glands usually return to normal after chemotherapy ends.
Salivary glands may not recover completely after radiation therapy ends.
Careful oral hygiene can help prevent mouth sores, gum disease, and tooth decay caused by dry mouth.
Tooth Decay
Taste Changes
Changes in taste (dysguesia) are common during chemotherapy and radiation therapy.
Malnutrition
Loss of appetite can lead to malnutrition.
Nutrition support may include liquid diets and tube feeding.
Mouth and Jaw Stiffness
Swallowing Problems
Pain during swallowing and being unable to swallow (dysphagia) are common in cancer patients before, during, and after treatment.
Trouble swallowing increases the risk of other complications.
Whether radiation therapy will affect swallowing depends on several factors.
Swallowing problems sometimes go away after treatment
Swallowing problems are managed by a team of experts.
Tissue and Bone Loss
The National Cancer Institute (NIH) promotes Regular Oral Care stating that:
"Good dental hygiene may help prevent or decrease complications. It is important to keep a close watch on oral health during cancer treatment. This helps prevent, find, and treat complications as soon as possible."
Keeping the mouth, teeth, and gums clean during and after cancer treatment may help decrease complications such as cavities, mouth sores, and infections. Everyday oral care for cancer patients includes keeping the mouth clean and being gentle with the tissue lining the mouth.
Everyday oral care during chemotherapy and radiation therapy includes the following:
Brushing teeth
Brush teeth and gums with a soft-bristle brush 2 to 3 times a day for 2 to 3 minutes. Be sure to brush the area where the teeth meet the gums and to rinse often.
Rinse the toothbrush in hot water every 15 to 30 seconds to soften the bristles, if needed.
Use a foam brush only if a soft-bristle brush cannot be used. Brush 2 to 3 times a day and use an antibacterial rinse. Rinse often.
Let the toothbrush air-dry between brushings.
Use a fluoride toothpaste with a mild taste. Flavoring may irritate the mouth, especially mint flavoring. (*If toothpaste irritates your mouth, brush with a mixture of 1/4 teaspoon of salt added to 1 cup of water.*)
Rinsing: Use a rinse every 2 hours to decrease soreness in the mouth. Dissolve 1/4 teaspoon of salt and 1/4 teaspoon of baking soda in 1 quart of water.
An antibacterial rinse may be used 2 to 4 times a day for gum disease. Rinse for 1 to 2 minutes.
Some great tips that I've noticed have helped my overall mouth hygeine post cancer treatments are as following:
Brush your teeth regularly (2x a day)
Use a Peroxyl mouthwash daily to prevent mouth sores
Use a Fluoride mouthwash rinse (3x a week)
Floss every night with your nightly tooth cleaning routine
Drink a lot of water throughout the day
Try to eat sugar-free gum and candy
Use a 'dry mouth' mouthwash (when needed)
Being intune with your body
It can be scary to think about but Chemotheraphy, Radiation, and other treatments can damage the heart, liver, kidneys, and lungs. So, along with follow ups with your Care Team, be aware of things that feel different throughtout the day. For example, if you feel heart palpatations, swelling, unusual pain, changes in the colorization of your urine, unusual lumps, and trouble breathing.
The University of Rochester Medical Center's research team has found that anticancer medicines, which are made to kill growing cancer cells, can affect normal, fast-growing cells elsewhere. These include:
Blood cells forming in the bone marrow
Cells in the digestive tract, such as in the mouth, stomach, intestines, and esophagus
Cells in the reproductive system, such as in the sexual organs
Hair follicles
Nerve and Muscle problems
Weak, sore, tired, or achy muscles
Walking problems or pain when walking
Loss of balance
Clumsiness, problems picking up objects, or both
Shaking or trembling
Hearing loss
Jaw pain
Stomach pain
Constipation
Tingling, numbness, or pain in the hands and feet
These medicines may also affect cells of vital organs, such as the heart, kidney, bladder, lungs, and nervous system. Chemo may have no serious long-term problems for many people. But in some cases, it can cause permanent changes or damage to the heart, lungs, nerves, kidneys, and reproductive or other organs. Certain types of chemo may also have delayed effects. For example, a second cancer may develop in the future.
These effects differ from patient to patient regarding their prognosis and type of cancer so it is very important to be aware of changes in your body and DON'T FREAK OUT (trust me I have a million times but over the years I have learned to calm the anxiety; trust me it's not easy) but to contact your care team immediately or, depending on how severe your problem is, get to the ER or an urgent care first then contact your care team.
Improve your Vision and Hearing changes
Cancer treatments can cause changes in eyes/vision and hearing in the long term. Stress associated with cancer and its treatment can also make hearing and vision changes increase. I will outline some facts and suggestions for help regarding post-cancer treatment side effects on hearing and vision (I suffer from the majority of these)
Vision Changes
Chemotherapy drugs, immunotherapies, and other targeted cancer drugs
can cause temporary and for some, permanent changes to your eyesight.
Vision problems
Changes in the way colors are seen
Seeing halos or rainbow-like rings around lights
Random small dark floaters and flashes of light Sensitivity to light
Eye pain
Inflammation of the eye
caused by an infection which can cause light sensitivity
Dry eyes
Blurry vision
Loss of peripheral vision
Watery eyes
Red and swollen eyelids
Headaches/Migraines
What can help
Wear dark sunglasses when outside and blue-light-eliminating glasses when looking at your cell phone, TV, computer, or electronic devices to lower the amount of light going into your eyes
Avoid looking directly in the sun or bright indoor lights
Try not to rub your eyes so often (as I tend to do) as it exacerbates irritation and could lead to infection
Throw away any eye make-up you have used in years
Give your eyes a simple break.
Occasionally I like to lie down and put a warm washcloth over my eyes and relax for 5-10 minutes. I notice a huge difference in my straining eye pain
Hearing Loss
The National Cancer Institute states that more than half of cancer survivors who were treated with chemotherapy for the four most common types of cancer experienced clinically significant hearing loss and tinnitus after treatment, according to new research.
Christine Miaskowski, RN, Ph.D., principal investigator of the study and a professor in the Department of Physiological Nursing at the University of California, San Francisco (UCSF) stated that “Nobody has really studied hearing loss from cancer treatments before in four common cancers,” she said, underscoring the need to look at hearing loss further, especially as a possible adverse effect of both platinum and taxane drugs, along with the better-documented chemotherapy-induced peripheral neuropathy. “We know the hearing loss is permanent. What’s not known is the relationship between these two adverse effects of neurotoxic chemotherapy.” In other words, there is a possibility that hearing loss results from the same kind of nerve damage that causes peripheral neuropathy, and a treatment to block one may work to prevent both adverse outcomes.
In the UCSF study, cancer survivors scoring lower on audiograms than the 50th percentile for age and gender at any hearing frequency were defined as having hearing loss.
Before formal hearing evaluations were conducted, only about 17% of study participants were using hearing aids. On average, the participants were 4.5 years past their cancer from diagnosis.
Investigators found that survivors significantly underestimated their own hearing loss, a finding congruent with that seen in the general population. Although 30% of participants self-reported hearing loss at study entry, audiograms, correcting for both age and gender, later revealed more than half of those receiving taxane drugs only and up to 70% of those receiving platinum drugs alone had hearing loss. Researchers attributed this broad discrepancy, in part, to individuals’ ability to accommodate for diminished hearing over time.
In the United States, an estimated 30 million Americans ages 12 and older have hearing loss in both ears, which becomes increasingly disabling as people age. Data from the National Institute on Deafness and Other Communication Disorders show that while 2% of adults ages 45 to 54 suffer disabling hearing loss, the rate increases with age. After age 75, that number jumps to 50%.
Hearing problems
Tinnitus
a sporadic ringing sound in the ear that can for some people sound like a buzzing or a roaring) buzzing
I personally suffer from this daily but I tend to only “hear” the swooshing/buzzing sound at night when I lay down. I have been dealing with this since my last chemotherapy treatment.
General hearing loss
Ringing in your ears
What can help
Clean your ears regularly to avoid ear wax build-up
If listening to music or even watching TV lower the volume; always keep it at a medium level
Avoid noisy environments
Wear earplugs in noisy places like at a concert
I even wear them at night to bed which helps my hearing sensitivity and tinnitus
If you suffer from tinnitus, there are natural remedies that may help ease the irritating swooshing
Meditation
Sound therapy: white noise, zen music, ambient sounds, etc.
Yoga
Stop smoking if you do
Reduce stress
As other cancer survivors and those in remission know, the battle continues but just in a different way, some more severe than others. My reason for saying all of this is to try and bring awareness to that fact alone, as it is very important and sometimes unseen.
Some say this disease is a "tail" and that it follows you for the rest of your life- the constant upkeep of medical, residual effects of chemotherapy, radiation, and other treatments and the list goes on and on...BUT WAIT! DON'T LOOK AT IT THAT WAY...DON'T LET IT CONSUME YOU, DON'T LET IT DEFINE YOU, DON'T THINK ABOUT WHAT YOU CAN'T DO NOW POST-CANCER BUT WHAT YOU CAN DO!
You may not be able to do things like you used to but you're ALIVE - you're able to cry, you're able to laugh; you're breathing, you're here to tell your story to hopefully help others and that's more than enough after facing the devil itself. Survivors, cancer thrivers, whoever out there that needs to hear this...BE PROUD OF YOURSELF, you made it through the storm!
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