When you were going through treatment or if you are now, do
you ever get that painful tingling in your fingers or feet? The feeling that
they are doing weird things and just not right? I certainly did and 4 years later still have
it, or the effects of it, to some degree.
CIPN – chemical induced peripheral neuropathy is nerve
damage caused by certain chemotherapy drugs. This can lead to feelings of
numbness, tingling, pain and muscle weakness and occurs predominantly in hands
and feet. It is a common side effects of chemotherapy especially with drugs known
as neurotoxic agents which affect the nerves outside of the brain and spinal
cord. It can be really mild with a little tingling or pins and needles but can
also be far more significant with patients losing all feeling and control of
their hands and feet. Sadly the chemotherapy kills off the cancer cells but
also kills off healthy ones, including nerve cells, and that can be hard to
accept – the medication you are taking to make you better is actually often
making you feel far worse!
Neuropathy can affect patients during treatment or sometimes occur after treatment has finished and will affect 30 to 50% of those
going through chemotherapy. Experiencing neuropathy can impact your quality of
life so it is important to note all details during and after treatment and
report back to your healthcare team. Good communication can mean that improvements
can be made – no one wants to see you suffer when something can be done about
it. Medication dosage can be reduced, different drugs can be tried and strategies
for coping introduced. Any new symptoms should be reported to your team so that
a diagnosis of neuropathy can be given as early as possible and steps taken to
ensure it does not get too bad.
In my case I suffered more or less instantly. As the drugs
took hold during infusion, my fingers would tingle. Washing my hands sent them
into total spasm and I found it difficult to grip a pen, do buttons or even use
the gear stick in my car. Getting something out of the fridge or freezer was
impossible, as was walking in cold air or preparing cold vegetables for the
evening meal. My feet became uncomfortable to walk on and in my case, my teeth
were affected too. Despite being in a heat wave, there were no cold drinks, ice
creams or frozen desserts as my teeth would react violently and my throat would
feel like I was eating broken glass. The first time it happened, I was
terrified but I got used to the signs and took steps to avoid it happening.
This meant everything and I do mean everything, was microwaved first for 20
seconds! Warm squash is a taste that
takes some getting used to!
Symptoms can include a sensitivity to cold or heat, a loss
of balance, difficulty with fine motor skills, muscle cramps and a general feeling
of weakness. Over the counter pain medications
can help, as can taking steps to improve self care. In my case, that meant wearing
a scarf or face mask when I was outside to keep my mouth protected, silver lined
gloves meant I could handle food a little better and seeking help from others
was very important. Even the shop assistant helped me out when I was unable to
take my debit card out of my purse because my fingers just wouldn’t work!
If symptoms are severe, the medical team may consider switching,
reducing or stopping the particular drug causing it. In most cases, neuropathy
improves significantly or disappears after finishing treatment, but carrying on
too long can cause a permanent issue as there isn’t a treatment to prevent or
reverse nerve damage. The most effective treatment is to stop a particular drug
but this can be tough to accept when you know the drug is getting rid of the
cancer. If this happens to you, talk things through thoroughly with your
medical team but be reassured that they will do what is best for you. Stopping a drug will allow the nerves to gradually recover or at least
become less troublesome over time.
Sadly, doctors cannot predict who will be affected by
neuropathy and they can’t prevent it from happening. All they can do is
prescribe, wait and watch what happens, hence why it is so important to discuss
any changes as soon as you can. On one of my infusions, I could feel my fingers
stiffening and when I looked, they were forming the Star Trek sign with fingers
fusing together! Had I not been rather frightened at the time it would have
been quite funny. The infusion was stopped immediately and then slowed down, and my
fingers gradually began to ease. Healing and recovering is not a fast process
but in time it will improve, though you may never be 100% clear.
So if you are struck by neuropathy, what can you do to make
things easier? Here are my top tips:
Talk to your healthcare team!
Wear warm gloves and socks during treatment and after to
help protect them
Wear gloves whenever you are working with your hands such as
washing up or gardening, or do what I did and delegate!
Wear oven gloves to protect yourself when removing food from
the oven.
Wear well fitting comfortable shoes or boots. Forget high
fashion and focus on pure comfort.
Avoid walking barefoot and check your feet regularly, using
moisturiser to keep them soft.
Test the water temperature before you enter a bath or shower
to make sure you can cope.
Ensure rooms are well lit and clutter free to avoid falls if
your balance is affected and use a support at night if you are feeling wobbly.
Leg exercises, support stockings and standing up slowly can
also help with balance issues. Use an assistive device such as a cane or walker
if necessary.
Access physical and occupational therapy or complementary
therapies if they are available to you – these will help with strength, balance
and co ordination and may be accessed through your hospital or local cancer
care centre.
Be reassured that the symptoms will ease over time.
Four years on, I am still finding discomfort with my feet on
occasion and my teeth which seem to have been quite badly affected. Being open
and honest with my dentist is helping but something I am still working on. At
times it is frustrating and depressing but I have to keep reminding myself that
I currently have no signs of cancer which is far more important. With time, my
teeth will hopefully be sorted so I need to be patient. I took up knitting to help my fingers work fully again, built up my walking time and started introducing finger and feet exercises. Work on it steadily and hopefully you will see improvements.
Neuropathy is difficult for other people to understand and
accept as it is not visible to others. Explain your issues and how you are
feeling and encourage that understanding to develop. This will help your friends and
family to support you the best they can through this uncomfortable and painful time.
Wishing you all well on your journey. Sending positive vibes
and good wishes to you all.