Living with Chemotherapy Induced Neuropathy

March, 2009 was the beginning of a harrowing journey that drastically changed my life. It was the month I was diagnosed with stage 3 (bordering on stage 4) colon cancer. After my surgery I began adjuvant chemotherapy. Adjuvant chemotherapy is chemotherapy received after the cancer is surgically removed. The surgery may not eliminate all the cancer, so the adjuvant chemotherapy treatment is used to kill any cancer cells that may have been missed. This would include cells that may have metastasized (traveled) to other parts of the body such as the liver.

As a result of my chemotherapy treatments, I developed Chemotherapy Induced Neuropathy, something I still experience to this day, and probably will for the rest of my life. But, it is not a result I regret, the alternative (not to have the chemotherapy) would most likely have resulted in an even worse outcome. I was fortunate to have had an excellent oncologist, Dr. Francisco E. Belette, MD with Broward Oncology Associates. The treatments he prescribed are without a doubt the reason I am here to day.

My chemotherapy regimen called for 12 infusions, 1 every 2 weeks, over a period of 6 months. During that time I would go to the infusion center at the Broward Health Imperial Point Hospital and receive standard IV infusions through a port in my chest. I would then be hooked up to a portable pump which I would carry around, much like a fanny pack, receiving chemotherapy through a slow infusion lasting 48 hours.

To understand why one gets Chemotherapy Induced Neuropathy, it is important to understand chemotherapy. In essence when you receive chemotherapy you are receiving controlled doses of poison. The poison travels throughout your entire body searching for microscopic cancer cells to kill before the cancer cells have the ability to take hold in other locations in your body, such as your liver. Besides traveling most often to your liver, cancer cells may even form small tumors in random areas, far from the original cancer, such as your lower back or in your chest. Some cancers can even travel to one’s brain.  This is why a timely and proper chemotherapy treatment is so important.

Chemotherapy drugs are given in a variety of ways, including intravenously by injection or pump, or even as a pill. Each drug works against a specific cancer, and each drug has specific doses and schedules for taking it. Each drug targets specific kinds of cells that are as similar as possible to the type of cancer cell that has invaded your body.

Colon cancer cells are fast growing cells, so the type of chemotherapy I was receiving targeted primarily fast growing cells throughout my body. Collateral damage can include cells such as hair cells, which are also fast growing cells. This is why many people who go through certain chemotherapy treatments, such as those for breast cancer, lose their hair during chemotherapy.

Unfortunately, some chemotherapy drugs, like those used to fight colon cancer will, overtime, cause damage to the peripheral nerves found in the hands and feet. Although rare, in extreme cases it can affect control of the bladder and bowel, which to an extent are controlled by the peripheral nerves.

Every case is different and dependent on many factors including the type of cancer and chemotherapy treatments. I can only share my personal experience as a result of treatments I received for my colon cancer, although my experiences are similar to others who I have spoken with who have experienced chemotherapy and now have Chemotherapy Induced Neuropathy.

Peripheral neuropathy is not an uncommon result of chemotherapy. However, not everyone who receives chemotherapy will experience peripheral neuropathy. A good oncologist will be on the lookout for the signs of neuropathy as you go through your treatments. I didn’t fully understand the implications at the time, but one of the consistent questions Dr. Belette would ask was “Are you having any problems buttoning your shirt?”

My male ego never wanted to admit to any problems, because of course, I could handle them. However, this is not a smart way of thinking. It is very important to let your oncologist know exactly what you are experiencing. Because of the nature of chemotherapy, you are going to be suffering from a number of symptoms beyond just those as a result of peripheral neuropathy, so you may not be as tuned in at the time to what is happening to your nerve endings. That makes the question about buttoning your shirt very important, because that is often the first sign the chemotherapy is starting to affect your peripheral nerves.

The tricky part is the Chemotherapy Induced Neuropathy symptoms you first experience may be far less severe then what you may eventually experience. This is because the chemotherapy drugs stay in your body for an extended period of time, which can be a few weeks after you stop your treatments.

Chemotherapy is a balancing act. You want to be able to tolerate it for as long as you can to ensure that as many as possible, hopeful all, remaining cancer cells are killed. But, you also don’t want to go so far as to cause other damaging problems, such as peripheral neuropathy. However, sometimes problems like peripheral neuropathy cannot be avoided. Unfortunately, it can be an inevitable consequence of trying to rid your body of cancer cells that, if left unchecked, can result in an even more severe problem – death. So, it is important to keep things in perspective, ending up with chemo-induced neuropathy, while not ideal, is not a bad tradeoff and obviously better than the alternative.

In my case I started experiencing neuropathy symptoms around my 8^th treatment. By my 11^th treatment Dr. Belette decided it was time to stop. At the time I felt like my neuropathy symptoms were no big deal and wanted to continue with what was supposed to be my 12^th and final treatment. In retrospect, I am glad he stopped me when he did because, my neuropathy symptoms did become much worse.

It started off slowly with mild symptoms such as tingling and numbness in my hands and feet progressing to the feeling of wearing socks, even when I wasn’t. But, before I knew it I began fumbling things such as my car keys. When I dropped my first cup of coffee I thought I was just being clumsy, but then I started dropping things regularly. I had lost the sensitivity of touch, I could still feel things such as pain if I pricked my self, but I could not tell how hard I was holding on to things. It became hard to button a shirt and do things with my hands that required precision. However, as bad as my hands became, the neuropathy in my feet was worse. This became a big problem when I would try to drive my car.

One afternoon, after a doctor’s appointment, I drove to a restaurant to meet a friend. Everything seemed normal until I pulled into the parking lot and then into a parking space. I went to put my foot on the brake and actually hit the accelerator torpedoing me over the cement bumper at then end of the space. I couldn’t feel where my feet were. There I sat with my car balancing on a cement bumper, grateful there wasn’t a car in the space in front mine. That is when I first understood how a person could actually drive through a store window. I was forced to make arrangements to have others drive me, until I became use to the neuropathy in my feet.

At its worst I fell a couple of times because, I didn’t know where my feet where. Once while exiting a car I couldn’t feel my feet and they ended up against a curb, which caused me to fall flat on my face. Often it felt like the soles of my feet where like rubber and rounded, causing me to lose my balance while walking. At night there were many times it felt like I was being stabbed with a knife with pain emanating from the bottom of my feet that would shoot up my legs.

Chemotherapy Induced Neuropathy symptoms I experienced have included:

• Numbness and tingling in my hands and feet;
• The feeling as if I was wearing socks when I wasn’t;
• Quick sharp pains, as if I was being stabbed in the bottom of my feet;
• Lost of balance especially in the shower when I would close my eyes, or while getting dressed;
• Difficulty with balance while walking;
• Lost of balance and falling such as when exiting a car because I was not able to feel where my feet where when they were up against a curb;
• Dropping items, like a coffee cup or salt shaker, because I could not feel how tightly I was gripping them;
• Trouble driving because I could not tell the exact location of my foot and if it was on the brake or gas pedal;
• The inability to run;
• The feeling that I was walking on rubber pads;
•  Difficulty buttoning a shirt;
• Difficulty walking after waking in the morning or after sitting for a while;
• Swelling of my calves and feet; (The upside of this symptom is I look better in shorts. No more chicken legs.)

It took a while for my neuropathy symptoms to subside. My neuropathy started just before my chemotherapy ended in October 2009 but, it wasn’t until around June of 2011 that I began to feel like I was turning the corner. This last year for me has been the best.

As my neuropathy was improving, I would still feel occasional quick sharp pains. Sometimes as if I was being stabbed, or poked, with a sharp instrument on the bottom of my feet. I welcomed those pains, because I took it as an indication my nerves were starting to heal and once again work properly.

Overtime all of my symptoms began to subside to the point I now forget I still have neuropathy, unless I think about it. The neuropathy in my feet is the worse, nothing serious just sometimes the feeling I am walking on crumbled up socks. Additionally, in the morning when I wake up, or after sitting for a while, it can be a little painful and difficult to walk at first, although the pain does go away. However, I no longer have as much trouble with my balance. I do find it difficult to run, which I haven’t done since I was first diagnosed, but hope to start running again someday.

I have never taken anything specifically for my neuropathy, outside of vitamin B12. Vitamin B12 is said to promote regeneration of nerve cells and help eliminate pain by restoring the nerve sheaths. If you are suffering from Chemotherapy Induced Neuropathy, I would strongly recommend you speak with your oncologist about vitamin B12 and other drugs that may help.

There are some drugs available that seem to have an affect on symptoms such as Cymbalta. (See the link below) But rest assured, in the case of Chemotherapy Induced Neuropathy for many there is a very good chance your symptoms will lessen over time. Peripheral nerves do have the ability to regenerate if they are not too badly damaged. One may never get back to 100%, but is very possible that one will get to a point, like myself, were your neuropathy becomes a mild inconvenience.

Below are some recommended links that will help with your search for more information on Chemotherapy Induced Neuropathy:

National Cancer Institute:
Chemotherapy-induced Peripheral Neuropathy

American Cancer Society:
Peripheral Neuropathy Caused By Chemotherapy

John Hopkins Medicine:
Chemo Induced Peripheral Neuropathy

Cancer Supportive Survivorship Care:
Chemotherapy-induced Peripheral Neuropathy Fact Sheet

WebMD:
Cymbalta May Relieve Chemo-Induced Pain, Tingling in Chemo-Related Peripheral Neuropathy