You will experience some side effects with chemo. I won’t beat around the bush – side effects are unpleasant and can impact on your daily life. When it comes to side effects, your oncologist and chemo nurses will want to ensure that a) you are not having a reaction to the drugs; b) you are not suffering from an infection; and c) you are as comfortable as possible.
My top ten important points to remember here are:
1. ALWAYS call the hospital, oncologist or GP if you are worried about any side effects. Make sure you have day and night contact numbers loaded into your phone and written down somewhere around the house for others to see. If you are unsure about whether or not to call with a question or concern, just make the call. Don’t worry about calling. It is better to call and allay your fears than to sit worrying about it.
2. I was given a list of side effects for which I had to call the chemo ward if I had them. You will probably be given a similar list which relates to your chemo drugs but if not then it is worth checking with your chemo team which ones you need to phone them about.
3. You will be told to keep an eye on your temperature which if exceeds a certain temperature (usually 37.5 or 38 degrees c) or goes below a certain temperature then you have to call the nurses or hospital straight away. Invest in a good quality digital ear thermometer to make sure you get an accurate reading. This is effectively to make sure that you don’t have an infection for which you will need antibiotics. (Remember that you have a low immune system during chemotherapy treatment and you will need antibiotics if you pick up an infection.)
4. Keep a daily journal after each cycle of chemo recording all side effects. This means you can look back to compare how you were feeling after each cycle. For example, on day 3 after cycle 4 you can look back and see if you are feeling the same as you felt on day 3 after cycles 1, 2 and 3. You’ll see if you have something different to usual and you can ask you chemo nurses about it if you are worried. There are Apps which allow you to record this information on your phone, try Chemo Wave is a free mobile app designed to navigate you through your treatment journey. It tracks your symptoms, mood, and activities – and then goes further to give you personalized insights to help you take control of your chemotherapy experience.
5. Different chemo drugs have different side effects. The Cancer Research UK website has an excellent resource which lists each of the breast cancer chemotherapy drugs and provides information on common, occasional and rare side effects and what to do if you have them. Bookmark this page or print it out. It is is something that you can refer back to over the course of your treatment. But remember to call you chemo team with any concerns.
7. Online forums and Facebook groups are an excellent place to ask other breast cancer patients for their suggestions and tips on how to alleviate side effects. And also to just chat to others going through the same thing as you (see the section on Support Groups and Online Forums). But remember that:
a. Different breast cancer chemo drugs have different side effects.
b. People react differently to the drugs and may have different side effects to you.
c. Any sign of an infection – call one of your chemo contact numbers.
8. Remember that the side effects will pass eventually. Some of the side effects do linger around: for up to six months after chemo ended (as I write this) I still have fatigue, chemo brain to a lesser extent (see point 10J below), brittle nails which keep breaking, dry sensitive skin and the odd achy day.
9. The Macmillan and Breast Cancer Care helplines are there to help with any concerns. Macmillan: 0808 808 0000. Breast Cancer Care: 0808 800 6000.
10. I experienced a sort of general chemo-fog encompassing me while I was going through chemo. Here are some of the more common side effects (including ones that I experienced) and tips on alleviating them, together with signposts to online resources:
a. Sleep problems. You may have trouble sleeping during chemotherapy. This can be due to a variety of factors including stress, anxiety and steroids. Try some of the relaxation techniques suggested in the section on relaxation (see my tips on relaxation).
b. Sore mouth.
– Your mouth can feel different: furry or sore. You can get mouth sores and ulcers. Sometimes the soreness can extend a little way down your throat which means it is hard to tell the difference between a throat infection and a dry throat. To be on the safe side it is best to get all sore throats checked out by the hospital.
– A soft toothbrush, Aloe Vera toothpaste and mouthwash can help because they are gentler than regular toothpaste and mouthwash.
– I have included some advice about things to eat/not eat with a sore mouth in the section on Eating and Drinking Your Way Through Chemo.
– Try wearing travel sickness bands (but only on the ok arm – not one from where lymph nodes have been removed).
– Try some relaxation techniques (see the tips on relaxation).
– Ask your chemo nurses for more/different anti sickness meds.
– Look at the tips to Eating and Drinking Your Way Through Chemo.
d. Taste changes. Look at the tips to Eating and Drinking Your Way Through Chemo.
e. Constipation. Yes let’s talk about poo shall we! Your chemo nurses can recommend a laxative which will depend on which chemo drug you are on. For someone who has never experienced this before in my life, the discomfort and pain came as quite as shock. I didn’t want to add to my drug intake so I tried the natural remedies listed below.
– Make sure you are drinking plenty of water
– You can add things to your diet to help:
– Homemade fruit and veg smoothies
– Fresh fruit and dried fruit
And depending on your chemo drugs, you may go the other way and experience loose bowel movements. Talk to your chemo nurses and oncologist about how to help with this.
f. Weight gain. Steroids, lack of exercise and an increased appetite can all contribute to weight gain. I was told that this was to be expected and as long as I ate a healthy diet and did a little bit of exercise when I could, I shouldn’t worry about it. But if you are worried talk to your chemo team and take a look at Macmillan’s advice.
g. Hair loss. I have written a whole section on hair loss because it is such a big thing for us to experience during treatment.
h. Aching joints and bones. Taxol made the bones and joints in my legs and wrists ache. It wasn’t excruciating but it was annoying and uncomfortable. Some women don’t get any pain, and others get quite severe pain. The best advice is to ask your nurses and oncologists what you should do about this. With my little bit of pain, they advised that I do a little bit of exercise everyday – a couple of short gentle walks which really helped.
i. Fatigue. Oh my! The extreme, constant, mind-numbing, excruciating, frustrating, all over, top to toe tiredness. Tiredness doesn’t even being to explain it. Most breast cancer websites, helpbooks and professionals call it “fatigue”. I actually don’t think that there is a word in the dictionary to describe it. You might be one of the lucky ones and not experience any of this “fatigue” but if, like me, it hits you hard like a train then this is what I was told:
– Exercise. Yep, that’s what I thought. How on earth can I possibly exercise while feeling like this? But I peeled myself off the sofa, tied up my trainer laces and put one foot slowly in front of the other. A couple of gentle short walks a day did actually make me feel better and incredibly gave me a little bit more energy.
– Relax. Try some of the relaxation tips (see my tips on relaxation) at bedtime to try to get a good night sleep.
– Eat healthily.
– Drink plenty of fluids like water and herbal teas.
For more advice ask your chemo team or take a peek at this advice from Breast Cancer Now.
j. Chemo brain. Chemo brain is the term given to the way in which your brain turns into a sieve. Actually mine turned into a slushy mushy mess and my children just laughed at how rubbish I was about not remembering things they had told me. Symptoms range from memory loss, difficulty finishing sentences and not being able to think of the right word. Some people are not affected and others get it quite badly. It should improve or disappear within a year of ending treatment. Macmillan have some good information on it and how to help plan your day taking chemo brain into account.
k. Dry and/or sensitive skin. Your skin can get dry and sensitive as a result of the chemo drugs. My tips for this are:
– Moisturise all over every day.
– Choose gentle skin care products (shower wash, moisturiser, face cleanser, moisturiser etc) for sensitive skin.
– You may want to consider converting to paraben-free or organic skin care if you have a hormone receptor positive / oestrogen receptor positive / ER positive diagnosis. In addition to the obvious benefits of having products without nasties, they are also gentler on your skin.
– Use sunscreen with a high protection factor – there are some good paraben-free and organic ranges available if you have made the conversion.
l. Indigestion and heartburn. Oh my! The indigestion that I suffered! For indigestion and heartburn I was recommended Gaviscon but check with your chemo team what you can take with the regime you are on.
m. Discoloured and/or ridged nails. Unfortunately our finger nails (and toe nails) don’t escape the side effects. Some chemo drugs cause them to ridge, sometimes the nail beds hurt and go brown, they can get brittle and break easily, completely lift off or just generally get in bad shape. Some drugs (for me it was the Taxol drug, but check with your chemo nurses about yours) react to sunlight and can cause damage to the nail bed. If you see any signs of nail infections let your doctor/nurses know straight away. (Take a look at the section on makeup for more tips on nails)
– Use a handcream.
– Use a nail oil or moisturiser.
– Keep nails short and well maintained.
– Wear gloves for washing up and gardening.
– Don’t have a manicure or pedicure – this is to avoid the risk of infection (remember your low immunity and possible risk or lymphoedema)
– Avoid nail gels and acrylics because they will weaken the nails more (and sometimes bacteria can get between the nail and the coating, causing infection).
– Use a non-acetone based nail polish remover.
– For some people, wearing a dark colour nail varnish helps protect the nails because it provides a barrier between the nail and sunlight. If you are using nail polish then consider using one which is free from some of the harsh chemicals usually found in nail polish (for example, Maggie Anne and Butter both of which are available from various online retailers)
n. Pins and needles in fingers and toes (neuropathy). Some chemo drugs can cause a pins and needles feeling or numbness in the tips of your fingers and toes. For this one, just tell your chemo nurses/oncologist so they can keep an eye on it.
o. Heightened sense of smell. This is a weird one. My sense of smell became really sensitive and there were some smells which made me feel physically sick – even if I just thought of the smell, I could feel myself starting to retch. For this I tried EFT which helped a lot. You can also try some of the other relaxation techniques (see my tips on relaxation).
p. Menopause. It’s not enough for life to throw breast cancer at us. We then have to deal with a host of chemo side effects. And the cherry on top is the menopause. Some of the chemo drugs can cause an early menopause. And if you are having hormone therapy then that can also cause the menopause to kick in. See the section on the menopause for tips and information. Sometimes your periods can stop during chemo, but come back once chemo is finished.
q. Emotional rollercoaster. It is perfectly normal to feel scared, worried, anxious, terrified, upset, sad, unhappy, tearful, plus a whole host of other emotions. Many hospitals provide counselling services for their breast cancer patients so don’t be afraid to ask your chemo nurse of breast care nurse. There are other places where you may find counselling services (often free of charge):
– Local cancer hospice – these often provide support for people living with cancer without a terminal diagnosis. It is worth calling up to find out.
– Local cancer charities.
– Your local Macmillan cancer centre – you can do a search on the Macmillan website to find local information, support centres, local support groups and practical help. You just pop in your post code and then click on “filters” to tick these two boxes.
– Breast Cancer Care helpline 0808 800 6000
– Macmillan helpline 0808 808 00 00
– In the Useful Links and Resources section there is a list of some regional breast cancer charities and advice centres. One of these may be close to you, but if not then many of them offer free telephone counselling or advice.
– You can download or order a copy of the Breast Cancer Now booklet on coping with the emotional issues of breast cancer here.
r. Immunity boost injections. If you are on one of the chemo drugs that requires you to have one, or daily, immunity boosting injections then these can cause what my chemo nurses called, “flu like symptoms”. For a few days I had an aching lower back, aching limbs, sensitive skin to touch, headaches and a general flu-y type feeling. So I was told to rest, drink plenty of fluids and go for a gentle walk.
HELPFUL RESOURCES AND MORE INFORMATION
A helpful online resource with more information on side effects generally is the Breast Cancer now website.
The Cancer Research UK website has an excellent resource which lists each of the breast cancer chemotherapy drugs and provides information on common, occasional and rare side effects and what to do if you have them. Bookmark this page or print it out. It is is something that you can refer back to over the course of your treatment. But remember to call you chemo team with any concerns.
The Cancer Research UK website also has a list of possible side effects of cancer treatment in general and how to alleviate them (bear in mind that this list covers treatment for all types of cancers so some will not be common for breast cancer treatment).
Other excellent resources are the nurse helplines on the Macmillan and Breast Cancer Now websites. You can call up and chat to a nurse. I spoke to their nurses a few times and they were really lovely and helpful.
Note: my number 1 tip for someone about to embark upon chemotherapy or already undergoing it is to get a copy of “Braving Chemo: What to Expect, How to Prepare and How to Get Through It” by Beverly A. Zavaleta MD (available from Amazon and other book stores). For my full review of this book see Breast Cancer Book Reviews.