The #1 Chemotherapy Induced Peripheral Neuropathy (CIPN) Guide (including resources and what to do next)
Chemotherapy-induced peripheral neuropathy (or CIPN) is an (usually) irreversible condition that — since it is a form of neuropathy — often presents as pain, numbness, sensitivity, and tingling in the feet and hands. Unfortunately, CIPN affects between 30% and 40% of cancer patients going through chemotherapy.
CIPN has no effective preventive strategy as it is a direct result of undergoing chemotherapy for cancer patients — it is almost a gamble; either undergo chemotherapy and risk developing CIPN or let your cancer develop.
We all know what people must do.
Thus, the rise of CIPN is almost expected when more and more people are diagnosed with cancer each and every year.
I find the following statistic staggering:
- This study shows that chemotherapy-induced peripheral neuropathy prevalence was at a whopping 68.1% when measured in the first month after chemotherapy.
This blog serves to aid those recently diagnosed with CIPN or those recently diagnosed with cancer; it contains everything you need to know about chemotherapy-induced peripheral neuropathy (CIPN).
Do you want to skip to a particular module? Use the legend below:
- Signs and Symptoms
- What to Expect
- How Chemotherapy Damages Your Nerves
- How to Manage CIPN
Signs and symptoms
CIPN signs and symptoms vary greatly and are solely dependant on which nerves are damaged or exposed. For example, you would expect those with polyneuropathy, peripheral neuropathy, and chemotherapy-induced peripheral neuropathy to all share some similar signs and symptoms (such as numbness and tingling) but also different signs and symptoms (such as little to no reflexes in the extremities).
Signs and symptoms of cancer
If you have been researching your signs, symptoms, and changes here and there you’ve been experiencing lately and you feel like you may have cancer, consult your doctor immediately. Continue reading to learn more about the signs and symptoms of cancer.
If there is one definitive thing we — as in the world — can agree on, it’s that cancer is on the rise.
From our diet choices and our lifestyles to what we breathe and what we drink, cancer is decimating populations worldwide.
It is no surprise that in 2018, an estimated 1,735,350 new cancer cases will be diagnosed. Read more: Statistics at a Glance – The Burden of Cancer in the United States (Cancer.gov).
Read more: What Causes Cancer? (Cancer.gov)
The signs and symptoms of cancer are as follows:
- unexplained weight loss (usually 10 pounds or more very quickly)
- fever (cancer affects the immune system)
- fatigue (extreme tiredness that doesn’t get better with rest)
- pain (headaches in brain cancer, bone cancers, testicular cancer, back pain for colon, rectum, or ovary cancer. IMPORTANT: more often than not, pain as a direct result of cancer typically means that the cancer has already spread from where it started; this is known as metastasized. If you feel a lump or growth in your body, follow this guide to determine whether you should be worried or not).
- an unexplained cough of voice-loss/hoarseness
- skin changes
- wart/mole changes
- difficulty swallowing
- lumps or mass in parts of the body (scrotum area, breast, lymph nodes)
- coughing blood
- blood in the stool
- abnormal vaginal bleeding
- blood in the urine
- bloody discharge from the nipple
- sores that will not heal
- white spots or sores in the mouth and/or on the tongue
- change in the bladder and/or bowel habits
However, signs and symptoms of cancer are often too closely related with other very common ailments and diseases. The signs and symptoms you are experiencing may be something much less significant that cancer; once again, if you feel like you may have cancer, please consult your doctor.
Signs and symptoms of CIPN
Chemotherapy-induced peripheral neuropathy (CIPN) is exactly what it sounds like: neuropathy caused by undergoing the chemotherapy process.
As previously mentioned, the odds are high that a cancer patient develops CIPN. The chemotherapy process is rigorous, painful, and extensive.
If you have undergone the chemotherapy process and you are experiencing any of the following symptoms, consult your doctor regarding the possibility of CIPN:
- shooting or stabbing pains
- burning sensations
- “pins and needles” sensations
- “electric shock” sensations
- loss of feeling
- decreased reflexes
- blood pressure changes
- difficulty urinating
- shrinking muscles
- muscle weakness
- difficulty holding objects
- difficulty walking
These signs and symptoms are quite common in other less impactful ailments and diagnoses as well, so please consult your doctor.
Read more: Being Healthy After Treatment (Cancer.gov)
What to expect
Nobody is really ready to hear a cancer or CIPN diagnosis; more prepared, sure, but never truly ready. So, what do you do?
What to expect when diagnosed with cancer
Take control! Even though you’ve been diagnosed with cancer, there has never been a better time than to turn things around for yourself. Follow the simple guideline below as a starting point.
- Consider a second opinion. Cancer is tricky and often complicated. If you’re having second thoughts about your diagnosis, you may want to consult a separate oncologist or general doctor.
- Do your research. As previously mentioned, cancer can be complicated. Know as much as you can about cancer to make better-informed decisions about your health care and to have better conversations with your oncologist. The ultimate goal here –although impossible— is to know as much as your doctor.
- Organize. Cancer diagnoses often come with a multitude of treatment, meeting, and consultation appointments. If you’re not used to writing things down, you may want to start. A great way to begin is by purchasing a notebook and pen you really like and begin writing appointments or meetings as soon as you hear them.
- Have a friend/mentor. With the likelihood of cancer so high, you may know of someone who has gone through a similar experience or knows of someone who has. Find a friend or a mentor to be there for you when things seem overwhelming or someone to talk you through the process.
Read more: Cancer.gov
Read more: Cancer Types (Saint Alphonsus)
Read more: Innovation.org
When diagnosed with cancer, you will typically schedule a chemotherapy start date. Chemotherapy is the treatment of disease (usually cancer) by the use of chemicals; this is actually the root cause of developing CIPN. To read more about how the chemotherapy process causes peripheral neuropathy, skip to How chemotherapy damages your nerves.
The following are examples of the routes taken by the majority of cancer patients in America:
- Immunotherapy uses the products of the immune system to fight cancer in your body.
- Chemotherapy uses anticancer chemicals and medications to kill the dividing and growing cells (intravenously, orally, or topically).
- Radiation therapy uses beams of high-energy — and sometimes implants — that kill cancer cells.
- Surgery that ranges from basic to highly intricate (tumor in the shoulder vs. brain surgery) to remove cancer cells.
This list is not all-inclusive. It is a list of the most common types of cancer treatments here in the United States. For a definitive list of cancer treatments, please consult your oncologist.
Read More: Cancer Diagnosis Advice (Mayo Clinic)
Read more: Cancer Support Community
How chemotherapy damages your nerves
Unfortunately, undergoing chemotherapy (one of the more common types of ways of fighting cancer) will greatly increase your risk of developing CIPN.
Before we understand how that works, we must understand the “normal” process for curing cancer. *Note: this is the process the majority of cancer patients go through. This is not a catch-all answer.
Your Oncology Structure
Cancer patients typically have a strong network of healthcare professionals providing a high echelon of care for them. You’ll need to trust in them to look out for you throughout this process and knowing which critical role each individual plays is key in strong doctor-patient relationships. You may or may not have the following healthcare specialists taking care of you:
- An oncologist is a doctor that specializes in treating cancer with powerful chemicals and medications. They are ultimately in charge of your treatments and they work with other cancer-specialists to create and maintain your treatment strategy.
- An oncology nurse works side by side with other nurses and the oncologist to administer and maintain the chemotherapy treatment as well as serve as support for the patients and their families. They typically have specialized nursing training that allows them to work more efficiently with doctors in the same specialization.
- Registered nurses (RN’s) often play a support role in the oncology treatment by facilitating surgeries and other general nursing duties.
- Other healthcare specialists may include therapists, pharmacists and more.
The Treatment Plan
Just before you start your chemotherapy journey, you’ll have a meeting with your oncologist to (usually) conduct a physical and to go over your pertinent past medical history.
From there, your oncologist will outline a chemotherapy treatment plan based on the results from this meeting as well as additional information (cancer location and type are critical).
*Note: I once read that bringing a friend or family member to this meeting helps to ask more efficient questions and feel comfortable throughout the process. I would highly recommend this.
Finally, the final phase of this process is usually what I like to call “sign off”; this means that you sign medical consent forms to undergo chemotherapy. You can not move forward in the process without signing this paperwork first.
The First Day of Chemotherapy
One of the most stressful moments of a cancer patients life is the first day of chemotherapy. It is often confusing, overwhelming, and quite terrifying.
As mentioned previously, bring a family member or friend. If no one is available, be sure to bring a music/movie player, a couple of books, and anything else that may put you at ease.
Here are a couple of things to keep in mind on this first day:
- The oncology team is there for you. Trust in them to provide you guidance and expert-level healthcare.
- You may have another quick physical completed by the oncology team (blood pressure, pulse rate (BPM), SP02 (saturation of peripheral oxygen), respiratory rate, and body temperature.
- You may need a port (a plastic/metal disk that the chemotherapy chemicals go through instead of your arm). Read more about ports here.
The amount of time you’ll need to undergo chemotherapy varies greatly on cancer type, size, and location. However, the process is not easy. You will often have to take multiple medications that work in tandem. Be sure to follow your doctor’s treatment plan exactly.
How CIPN Can Develop From Chemotherapy
Now that we understand the plethora of treatments, ins and outs, and the more common treatment plan for cancer, here is a look at how these chemicals can damage your nerves.
Chemotherapy uses powerful chemicals and medications to:
- Cure the cancer; meaning, literally physically destroy the cancer so it does not come back.
- Control the cancer; meaning, if the cancer is growing and spreading at the extremely fast rate, the only thing the oncology team may be able to do is to use chemotherapy to shrink tumors and/or stop the spreading. This process can take much longer and it is usually done to help people live longer.
- Palliate the cancer; meaning, the cancer is uncontrollable (you may have heard this referred to as Stage 4 cancer) and has begun to spread to other areas of the body. Typically, this type of chemotherapy is used when the oncology team is trying to extend a life.
The main issue with the chemotherapy process is this: the chemicals don’t discriminate. They’re there to do one simple job: destroy cells.
This is why you’ll see some immediate effects (hair loss, infections, and nausea) and some unseen effects (peripheral neuropathy) when undergoing chemotherapy.
*Note: notice the myelin sheath (blue cylinders on the right side) and how they protect the extremely-detailed and multi-faceted organization of the nerves. When this is damaged, it results in the massively complex nerve structure to be exposed and vulnerable to even the slightest touch.
The cancer-fighting chemicals can’t differentiate nerve endings from cancer cells, so it attacks both. This results in the myelin sheath (the tissue surrounding your nerves) being destroyed, less efficient, and/or extremely pliable (see above).
As a result, peripheral neuropathy is developed.
Here is a list of common chemotherapy drugs that have been directly associated with neuropathy:
- Abraxane (albumin-bound or nab-paclitaxel)
- Velcade (bortezomib)
- Jevtana (cabazitaxel)
- Paraplatin (carboplatin)
- Kyprolis (carfilzomib)
- Halaven (eribulin)
- Elotaxin (oxaliplatin)
- Navelbine (vinorelbine)
- Oncovin (vincristine)
- VP-16 (etoposide)
- Taxol (paclitaxel)
- Vincasar (vincristine)
- Thalomid (thalidomide)
- PES (vincristine)
- Vincrex (vincristine)
What to expect if you have CIPN
Now that you have a better understanding of how CIPN is developed, let’s talk about what you need to expect if you or someone you know is now suffering from CIPN as a result of neuropathy.
The following are a couple of general rules:
- Even though CIPN is developed as a result of chemotherapy, the signs and symptoms are quite similar to peripheral neuropathy; since both are developed from damage to the myelin sheath, you can expect very similar symptom experiences.
- That being said, some symptoms may be exacerbated differently due to the direct cause (sugar in those who developed neuropathy as a result from diabetes or certain chemicals in that directly affect nerves in the body for those who developed CIPN, as two examples).
- You can not legitimately replace the myelin sheath, damaged nerves, or destroyed nerves. Some new technology allows for very minor nerve repair.
When discussing neuropathy, it is important to remember the limitations you’ll experience as a direct response of developing CIPN.
- Depending on the nerves affected, you may experience difficulty holding objects, walking, or general self-tasks.
- You may feel tingling, numbness, sharp pains, oversensitivity, balance and coordination issues, jaw pain, hearing loss, and constipation.
- If you develop severe neuropathy, you may experience breathing difficulties, organ failure, and hear/blood pressure changes.
If I can give you one tip to manage your symptoms, it would be to maintain all aspects of your health. The nervous system is so intricate and complex; in some way, most nerves are connected.
This results in constipation and organ failure, the jaw pain, and especially the weakness.
To help, read the next section below and follow the links.
How to manage your CIPN
When suffering from CIPN — and neuropathy in general — there are four main aspects of our lives you must maintain to the highest degree: hydration, diet, dietary supplements, and exercise. For the sake of reading time, please follow the links below for further information on each subject and how it can improve your lifestyle.
Hydration plays a big role in your life, regardless if you suffer from CIPN or not.
Since the majority of our body is comprised of water, we only do ourselves a favor when replenishing and replacing the older water in our bodies with fresh water.
This keeps things running smoothly and combats against the negative effects of neuropathy.
Perhaps the most important aspect of your neuropathy journey, your dietary consumption and nutritional outlook play a critical role in your CIPN/neuropathy journey.
Your dietary consumption can heavily influence the pliability of your nerves as well as impact your gastrointestinal health.
Although exercise may be difficult to do when suffering from peripheral neuropathy, it must be done. Without some kind of physical activity, you will begin to develop weakness, shrinking in the muscles, and gain unnecessary weight.
To combat this, be sure to go on walks. It’s an easy and quick way to stay on top of your exercise regimen and it is easy on your body.
If this is too much, give water aerobics a try. Plenty of hometown gyms have a pool that may offer classes.
Finally, dietary supplements are a fantastic way to obtain vital minerals and vitamins that you wouldn’t necessarily get from the foods you eat; it is also a fantastic source of critical ingredients you can’t get anywhere local.
Consider taking vitamins that help relieve neuropathy symptoms and help you feel your best.
The following links are additional resources and a quick snippet on why I think they may help you.
- Dana-Farber Cancer Institute’s FAQ list (FAQ’s regarding CIPN) here.
- Cancer.org (insightful oncology information) here.
- A CIPN study (conducted by ClinicalTrials.gov that goes into the scientific description of CIPN) here.
- A narrative overview of CIPN by NCBI here.
- CIPN study an increased falling risk study conducted by JAMA Neurology, here.
Although CIPN is developed by undergoing chemotherapy, it is still the route cancer patients typically take. The risk of being deceased outweighs the risk of developing neuropathy — this increases the numbers of CIPN sufferers.
As this guide serves as only an instructional tool, nothing outweighs the importance of consulting your doctor and getting the direct and high-level expert advice of a healthcare professional. Please consult your doctor prior to making any major lifestyle changes and, or, doing anything differently.
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