Chemotherapy Induced Peripheral Neuropathy

 

When diagnosed with cancer all you focus on is getting through it the best you can and fighting it into remission. Before I began the fight I was relatively healthy and had no signs or symptoms of even having cancer. It is such a big learning curve when going through the journey of cancer. I didn’t realise the extent of damage that the chemotherapy has on your mind and body. There is such a huge array of side effects from chemotherapy that can be short and long lasting. 

I managed to get through the rough AC Dose dense drugs reasonably unscathed. Then I went onto paclitaxel and things took an unwanted turn as I experienced the side effect of Chemotherapy Induced Peripheral Neuropathy (CIPN). 

So what is CIPN? 

Cancer Council of Australia (2020) informs that Chemotherapy Induced Peripheral Neuropathy is damage to the peripheral nerves. These are the nerves located away from the centre of the body, such as in the hands and feet. Unlike other cells in the body, nerve cells are not easily repaired or replaced once they are badly damaged.

People affected by CIPN may experience different symptoms, depending on which peripheral nerves are damaged. No two cases are exactly the same.

Most often, the nerve damage causes numbness, tingling, pins and needles, or pain in the hands and feet. If the condition worsens, these symptoms may start to spread further up the arms and legs. 

CIPN symptoms range from mild to severe, they can appear during or after treatment, and they may be temporary or permanent. In more severe cases, the symptoms of peripheral neuropathy can greatly affect a person’s quality of life (Cancer Council, 2020).

My experience of CIPN

I received dose dense paclitaxel which is like having 3 treatments in one and two days later I experienced neuropathy for the first time. Forty five days later and my CIPN has not gone away and actually increased in the magnitude of symptoms. I have had two more rounds at 70% dose dense which means I have had around 8 out of 12 treatments and my neuropathy is currently at its worst. 

My fingertips are constantly numb and feel like I have carpet burn on them. The pain has travelled beyond my fingertips to my whole hand and occasionally I get a shooting pain through them. If anyone has been to the snow and their hands feel like they are burning and painful after playing with the snow, that’s a similar feeling I have constantly. It is effecting my fine motor control with simple everyday things. Doing up zips, undoing lids, getting cards out of my purse, opening freezer bags, doing up or undoing knots and the list is continually building. 

My feet were not too bad until my third dose dense treatment. Now the pain and pins and needles cover the whole base of my foot and travel slightly up my calf. They feel constantly fuzzy and I get pins and needles in my heel. I am finding this gets worse at night and keeps me from getting decent sleep as I am so restless from the uncomfortableness of it all. At times it hurts to walk and on a couple of occasions my leg has given away. 

I need to see my oncologist regarding my final chemo treatment next week. He has monitored the neuropathy after each treatment as there is a real risk that the damage done to the nerves will be long lasting. It’s such a fine line between trying to have the chemo drug to reduce the size of the cancer and knowing what sort of damage I will be left with for my future. I want quality of life and at the moment I am really concerned that I will have to put up with this for the rest of my life. If only I had a glass ball and could see into the future. 

This neuropathy has definitely made my experience more like a roller coaster with more variables making me more anxious as I get towards the end. How much do I try and push through to give myself the best chance of fighting this cancer and how much do I consider my quality of life beyond cancer.

Everyone experiences this side effect differently. Upon reading the neuropathy can get worse 3-5months after my final treatment. I am hoping this is not the case for me. It can also lessen or disappear or for a few unlucky people it can be permanent damage and never get better. 

As I said at the beginning of this blog, I wasn’t prepared for the side effects of treatment and the impact it has on my mental, physical and emotional state. I have also come to realise I have anxiety around change and the unknown. With so much change and not knowing my plan moving forward I started to get inside my head and not deal with it all. I had a week or so of unravelling not knowing what was happening to my chemo and the effects it would have on scheduling surgery. It wasn’t until I had a plan moving forward with my surgeon that I was able to calm down and feel in control.

As I get to the end of treatment I am feeling worn out and tired. I am always so tired. I can definitely feel things starting to take a toll on me. But the finish line is in sight and I am getting close to the point of having my surgery and removing this cancer for good. I am picking myself up off the floor and taking each day as it comes. The finish line is so close now. And if this neuropathy wants to hang around for a long time, then I will have a constant reminder of what I put my body through to beat this thing. 

I said to my partner that this cancer has taken a whole year of my life and his response was well at least you will have a life. It put everything into perspective. I am nearly there. I have got this!