At a glance
- No two people’s chemotherapy is the same.
- How will it be administered?
- How often will it need to be administered?
- Ask how long each of the treatments take, assuming no delays.
- Ask what side effects are expected.
- Ask if there are any side effects that you should be particularly aware of – such as life threatening.
- Ask what to do if you experience side effects.
- Ask what you can do to improve outcome.
- Ask how you can aid recovery/healing.
- Ask if your partner should stop or start anything, such as medicines or food.
Jen was really scared the first time – I was too. I made sure I stayed by her side as each new drug was administered to ensure I could raise the alarm if she reacted to the drug. I also made sure there were no leaks.
Some (probably most) chemotherapy drugs are extremely toxic.
On the morning of the second set of Jen’s chemotherapy, she was due to have her first dose of cyclophosphamide. We were seated opposite a lady who suffered a very severe reaction to the same drug. She started to have acute breathing difficulties, started to go into shock and BAM! the chemotherapy nurses were on the case, administering counter medications, making the lady safe and well again and getting her stable. The team assembled in seconds, doctors appeared from nowhere and she was looked after so swiftly and so competently, we were comforted (though still scared) that should anything bad happen, the medical teams around us were well rehearsed and capable of countering pretty much anything.
Blood tests are taken prior to each treatment being administered – usually a week before the treatment. Checking for white cell counts, liver function plus a load of other metrics I won’t pretend to understand. The results of the blood tests are essential in detecting issues with the chemotherapy.
What chemotherapy, if any, your partner is going to have and at what stage of the treatment plan she receives it will depend entirely on the grade and stage of the cancer. There is a massive range of cancer drugs and combinations. The most common are listed below.
Your partner will need to sign consent forms which detail the specific drugs and their associated side effects. They can make for a very daunting read. I recommend you read them so you fully understand the risks involved but remember the decision for treatment is entirely your partner’s.
Before the treatment starts, you may be able to go to the oncology clinic for orientation – this gives you a good idea of where the clinic is and what you need to do when you first get there. It’s geared up in a general manner, so the person doing the orientation won’t be able to answer questions about your partner’s specific treatment, so do keep that in mind.
On the day, make sure you leave with plenty of time to spare to allow for unexpected traffic. Of course, this will depend on how far you are from the hospital. In our case it was an hour’s drive, so we left with 30 minutes to spare each time. Also have a good idea about the parking arrangements and where you need to be going for the treatment. You should be able to either get subsidised or completely free parking.
Once you’re booked in by reception, you’ll be taken to your treatment chair – this will be a comfy chair for your partner and a cast iron spike (or similar) for you. Each chair has a drip feed machine that will be used to administer the treatment. They make strange beeps from time to time – usually when flow is obstructed and when they are running on battery power. Battery power enables your partner to make toilet visits.
Once seated, the chemotherapy nurse will insert a cannula, which is a needle that contains a flexible plastic tube. Once inserted, your partner should have a reasonable range of movement in her hand as the tube bends.
The first ‘flush’ fluid will be administered to open up flow to the vein, followed by either anti-emetics (anti-sickness) medication and/or steroids to prevent adverse reaction to the chemotherapy drug. Each time a drug is administered it is preceded and followed by a flush. Therefore, if your partner is having two chemotherapy drugs and, say, anti-emetics, there will be a flush, followed by anti-emetics, then another flush, chemo drug one, another flush, chemo drug two and then a final flush. So, a total of seven bags will be infused.
You may have heard terrible stories about patients being poisoned by overdose, but there are incredibly stringent checks and balances in place to ensure this doesn’t happen. For example, before any chemotherapy is to be administered, the nurse performing the administration will actively ask your partner to identify herself. I say actively because they cannot accept passive answers. Thus, the nurse will ask your partner’s name and date of birth. If for any reason your partner cannot provide this information, the treatment will NOT proceed. This will happen for every single instance the drug is given. Therefore, if your partner is having three chemotherapy drugs in one session, the nurse will need to obtain a positive ID from your partner for each one. At our oncology clinic, the procedure was for two nurses to check each administration for each patient. Personally, I wouldn’t have it any other way.
If you’re interested in reading the documented guidelines for various NHS trusts, do an internet search for ‘uk chemotherapy administration guidelines’.
The number of treatments your partner is having in a given session will dictate how long you’re going to be in the chemo unit and therefore what you need to take with you. The treatment will be dictated by the type of cancer your partner has. If it’s her first time, your partner will likely be observed for an hour or so after each chemotherapy infusion to ensure she doesn’t have any acute adverse reactions. So you’ll probably need some light entertainment and a snack and drink. If your partner is having multiple treatments, say, epirubicin, cyclophosphamide and herceptin, then you’re likely to be in the chemo unit all day, so you need plenty of entertainment and sustenance.
The following is a list of common breast cancer chemotherapy drugs. It almost certainly isn’t complete, though part of my ongoing work does include keeping this list up to date, so if you’re reading the latest version of the book, it should be reasonably close to comprehensive. The reason I say ‘reasonably comprehensive’ is because the drug names were taken in the main from Macmillan Cancer Care, Cancer Research UK and Breast Cancer Care. Annoyingly, their lists of breast cancer drugs don’t all match, so I have researched each one in turn to ensure it is a de facto breast cancer chemotherapy drug. To my (albeit limited) knowledge, it’s the most comprehensive list of breast cancer-specific chemotherapy drugs available in the UK right now. If you find a more thorough list, please do let me know and I’ll update accordingly. I have provided links to my sources at the end of the list in case you want to do your own research. Alternatively, if you want to look into one of the items on the below list, simply type it into a search engine. Might be worth making a cuppa before you start – it can make for heavy reading. Oh yeah, one other point – new cancer treatments, including chemotherapies, are being researched every day. If something isn’t on this list that should be, please do let me know.
Abraxane® (Nab-paclitaxel)
AC: Doxorubicin (Adriamycin®) & Cyclophosphamide
Adriamycin® (Doxorubicin)
Bleomycin
Caelyx® (Liposomal doxorubicin)
CD: Capecetabine (Xeloda®) and Docetaxel (Taxotere®)
Capecitabine (Xeloda®)
Carboplatin
CE: Carboplatin & Etoposide
CMF: Cyclophosphamide, Methotrexate & 5 Fluorouracil (5FU)
Cyclophosphamide
Docetaxel (Taxotere®)
Doxorubicin (Adriamycin®)
EC: Epirubicin (Pharmorubicin®) & Cyclophosphamide
E-CMF: Epirubicin, Cyclophosphamide, Methotrexate & 5 Fluorouracil (5FU) (Epi-CMF)
EP/PE: Etoposide (Etopophos®, Vepesid®) & Cisplatin
Epirubicin (Pharmorubicin®)
Eribulin (Halaven®)
Etopophos® (Etoposide)
Etoposide (Etopophos®, Vepesid®)
FEC: 5 Fluorouracil (5FU), Epirubicin & Cyclophosphamide
FEC-T: 5 Fluorouracil (5FU), Epirubicin, Cyclophosphamide & Docetaxel (Taxotere®)
Fluorouracil (5FU)
GemCarbo: Gemcitabine (Gemzar®) & Carboplatin
Gemcitabine (Gemzar®)
GemCis (or GemCisplat): Gemcitabine & Cisplatin
Gemzar® (Gemcitabine)
Halaven® (Eribulin)
Idarubicin (Zavedos®)
Liposomal doxorubicin (Caelyx®, Myocet®)
Methotrexate
Mitomycin (Mitomycin-C Kyowa®)
Mitomycin (Mitomycin-C Kyowa®) & Fluorouracil (5FU)
Mitoxantrone
Myocet® (Liposomal doxorubicin)
Nab-paclitaxel (Abraxane®)
Navelbine® (Vinorelbine)
Oncovin® (Vincristine)
Paclitaxel (Taxol®)
Paclitaxel & Carboplatin (Taxol®/Carbo)
Pharmorubicin® (Epirubicin)
PTD: Pertuzumab, Trastuzumab (Herceptin®) & Docetaxel (Taxotere®)
TAC: Docetaxel (Taxotere®), Doxorubicin (Adriamycin®) & Cyclophosphamide
Taxol® (Paclitaxel)
Taxotere® (Docetaxel)
TC: Docetaxel (Taxotere®) & Cyclophosphamide
Vepesid® (Etoposide)
Vincristine (Oncovin®)
Vinorelbine (Navelbine®)
Xeloda® (Capecetabine)
Zavedos® (Idarubicin)
Sources:
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs
Dealing with side effects
There is a broad range of side effects with chemotherapy. The following non-exhaustive list gives you an idea of some of them.
IMPORTANT! Before you read this list, keep in mind that these are some of the common AND uncommon side effects of ALL chemotherapies. Not ALL chemotherapies have ALL of the following side effects and there’s nothing to say your partner will encounter ANY of them. The list below is to demonstrate how important it is to be aware of your partner’s medication and the potential side effects she MAY encounter so you can be ready to support her.
Similarly, it’s vitally important to listen to, read about, digest and understand fully the side effects your partner is potentially going to encounter during chemotherapy as some can be life threatening, often alarmingly quickly, if not addressed in a timely manner. These can be during the administration of the drugs as well as at home.
Allergic reaction
It’s common for strong antihistamines, steroids and other preventive medicines to be administered before, during and after chemotherapy. Allergic reaction can occur during administration as well as afterwards. There is a wide range of symptoms which present themselves on a sliding scale of severity. Swelling, hives, rashes breathing difficulties, itching, blood pressure changes and more are all possible. Be sure to notify your primary care contact if you encounter any reactions. As a general rule, if your partner doesn’t react badly the first time the drug is administered, she’s far less likely to in future (though it’s not impossible).
Hair Loss
Perhaps the most well-known side effect of chemotherapy, probably due to its visibility, is hair loss. Not everyone loses their hair, though there’s a strong chance they will. I can’t tell you and your partner how to approach this, but I can tell you how we did as well as point out the excellent resources available to people. In our case, Jen started off with a ‘Pixie cut’. Like I didn’t, as a bloke you probably don’t have a clue what that is – it’s basically a very short hair style – similar to the Pixie in Peter Pan. That was to essentially acclimatise Jen and everyone else to short hair. As treatment progressed, Jen’s hair thinned out until we reached the point where she thought it best to shave her head.
It’s worth noting that a ‘cold cap’ is available as part of chemotherapy, but it isn’t guaranteed to work, is uncomfortable and will prolong the timing of the treatment. We gathered it wasn’t good for people prone to migraines, either. Jen opted not to use it.
Macmillan provides a ‘Look Good Feel Good’ course and the wigs nowadays are indistinguishable from real hair. Also, it’s amazing what you can do with scarves nowadays, though your partner will probably just want a light beanie hat to wear at home to keep her head warm.
Nausea, Vomiting, Loss of appetite
Another well-known side effect of chemotherapy, of course, is vomiting. On its own, in isolation, it doesn’t pose any great risks, though if your partner is nauseated or vomiting, speak to your specialists because they can arrange for several different anti-nausea and anti-emetics (anti-sickness) medications. If the first one they try doesn’t work, tell them again and they’ll try the next one until your partner’s sickness is managed. Jen vomited up the first ones they gave her….
Continuous, unchecked vomiting – that is, prolonged and continual bouts – can be life threatening and need to be addressed. One immediate effect of this type of vomiting is dehydration, particularly if your partner is puking up the fluids she takes on board before she’s had a chance to absorb them. Acute and/or chronic dehydration, besides directly affecting the cancer treatment and preventing the toxins from being flushed out, can lead to organ failure and death. Make sure your partner is taking electrolytes on board with plenty of fluids. Sports drinks are particularly good for this.
Cognitive impairment (‘chemo brain’)
Difficulty thinking and/or remembering are quite common side effects. You’ll probably hear the phrase ‘chemo brain’ on your travels. Keep an eye out for it and try to do some of the mental heavy lifting for your partner. For example, it’s probably not a great idea if she does her tax returns unless you’re certain she’s up to the job. I mean, some people enjoy that sort of thing. I’ve no idea why though. Don’t forget about the ‘Lists’ chapter to save you and her time and mental effort when you’re planning.
Sore mouth & changes in taste
This can be either the tongue, gums, cheeks, the throat – pretty much the whole mouth. It’s essential your partner practises good oral hygiene. There are several mouth washes that can be prescribed to help with discomfort as well as to ward off ulcers and the like. It’s also worth your partner visiting the dentist before treatment starts but it’s very important to make sure you check with the oncologist before doing so as some treatments, such as Zoledronic Acid for bone protection, can cause very serious jaw issues (such as necrosis (death) of the bone) if the dentist performs certain types of work too soon before or after treatment. We found Iglu to be particularly effective in the relief of mouth ulcers.
Bladder irritation & urine discolouration
Your partner may be no stranger to urinary tract infections but it’s important you tell your primary care provider if she experiences discomfort when urinating. This could be caused by irritation of the bladder lining from certain chemotherapy drugs. Drugs can be prescribed to help with this, but the best way to ward off irritation and infection is to stay well hydrated – plenty of water – and to urinate as soon as the need arises. Some chemotherapy drugs can cause discolouration of the urine – notably Doxorubicin can cause the urine to turn red or pink directly after treatment. Jen’s was the colour of rose wine temporarily. As with everything, if you’re not sure, flag it up.
Loss of fertility
Some chemotherapy drugs can cause temporary or permanent loss of fertility due to an effect on the ovaries. Needless to say, you shouldn’t be trying for a baby while your partner is going through treatment but do speak to your oncologist about fertility before treatment starts if you’re are planning to have children. Coupled with loss of fertility and, again, due to the effect on the ovaries, are menopausal symptoms, such as hot flushes, night sweats, erratic mood/emotion swings, aches and pains and vaginal dryness. Again, flag any uncontrolled or uncomfortable symptoms.
Eye discomfort and runny nose
Some chemotherapy drugs affect the mucus membranes and this can cause eye soreness and a really, really, really annoying (for your partner) runny nose. Jen reached the point where she would plug her nose with tissues. The oncologist may be able to prescribe nasal sprays and/or eye drops as appropriate. Buy your partner the softest, gentlest Aloe Vera-infused tissues you can lay your hands on to save her nostrils from chafing. Lip balms are particularly good for chaffing relief.
Weight changes (loss/gain)
Making sure your partner has ready access to freshly prepared, nutritious home cooked foods is important for her to maintain a healthy weight. However, despite your best efforts, weight changes can and do occur during chemotherapy, whether through loss of appetite due to chemotherapy or increased appetite from the peripheral steroids often given pre- and post-chemotherapy administration. If you can’t prepare food fresh, it helps to batch cook nutritious meals and freeze them so they’re quick and easy to heat up in the microwave.
Skin changes
You partner’s skin may react in various ways, including itchiness, soreness (particularly hands and feet) and dryness. Any soreness at chemotherapy injection sites should be reported as soon as they are known because some chemotherapy drugs are extremely toxic when exposed to the air and in contact with skin. This is particularly important to keep an eye on during administration – any leaks need to be reported as a matter of urgency. If your partner’s hands and/or feet become itchy, red or sore, the oncologist should be able to prescribe a topical application to ease discomfort. For dry, flaky skin, good quality moisturiser will help.
Nail changes
Your partner’s finger and toe nails may become ridged, more brittle and discoloured during chemotherapy. Some ladies have had good results using dark nail polish, though I’m not convinced there’s any science to back this up, but there’s certainly strong anecdotal ‘evidence’. Nails will usually return to normal after treatment.
Fatigue
Fatigue is quite normal for many patients going through chemotherapy. It generally can’t be treated with anything other than rest. Even so, keep communicating all side effects to the oncologist all the same.
Heart changes
I know. The list seems endless. But keep in mind that there’s no certainty your partner will be affected. All the same, if the chemotherapy drug(s) your partner is prescribed are known to affect heart function, she will have a heart function test before, during and after treatment to establish if there are any pre-existing issues and to track any changes that may occur.
Liver and Kidney changes
Some chemotherapy drugs may affect either or both of these organs. Your partner’s blood results – taken before each chemotherapy cycle – will indicate any issues and catch undesirable fluctuations in various blood markers which are monitored throughout treatment.
Reduced white blood cell count (increased risk of infection)
Another good (but probably lesser known (I didn’t know before Jen’s treatment)) example of side effects is an increased risk of infection. So you need to act quickly if your partner spikes a temperature during the chemo treatment cycles (at any time). Why? Because some chemotherapy reduces white blood cell count, compromising your partner’s immune system which, in turn, opens her to infection. Untreated infection can quickly lead to sepsis, causing systemic organ failure and death. This is why it’s so important your partner’s temperature is regularly checked (by you and/or her), and especially before taking medication that normalises the body’s temperature regulation – such as paracetamol. Of course, if this is likely to be something you need to be aware of, your specialist will make you aware of it, as well as advise you of procedure in the event of a temperature spike. For example, Jen was given a card that basically instructed A&E staff that Jen needed broad spectrum, IV antibiotics in the case of a temperature. No blood tests to identify the infection, just straight on to IV within an hour of presenting with a temperature. Conversely, this happened three times during Jen’s chemo. Luckily we had her emergency overnight bag (see last item in ‘Lists’ chapter) in the boot of the car on all three occasions, though Jen throwing a temperature at 3 am wasn’t fun. But I digress.
Reduced red blood cell count (anaemia)
Symptoms of anaemia can include tiredness, dizziness and breathlessness. If your partner experiences any of these symptoms they need to be reported to your primary care provider as your partner may need a blood transfusion to get levels back to normal.
Reduced platelets in the blood
A reduction in the blood’s platelet count can result in easier bruising and bleeding. Platelet counts will be monitored as part of your partner’s standard blood tests and, if they are low, steps will be taken to get them back up to expected levels. This will usually be via transfusion.
So…it’s important to communicate any uncontrolled side effects to your specialist healthcare provider, key worker, breast care nurse, oncologist or GP. If you’re unsure or otherwise don’t know what to do, call your specialist or the NHS line (111) or get your partner to a hospital. It’s better to ask and it be nothing than to not ask, it turn out to be something and your partner dies as a result. Imagine how foolish you’d feel then….
Jen and I found it helped to break it down into three-weekly blocks so a new list would be created after each chemotherapy cycle. To give you some idea of how we did it, here is one of the lists of symptoms we kept so we could communicate them to the oncologist in our three weekly appointments. Note that your partner may or may not experience these or any number of other symptoms. They are specific to Jen and NOT your partner!
Chemo 5 EC side effects
Day 1
Tired and heady
Nausea by 4pm
5pm Took metoclopramide
Vomited 6pm
Vomited 8pm
Took ondansetron 8mg at 20.07 as per advice from L at oncology clinic
21.00 took metoclopramide
Vomited 22.00
Sleeping tab 22.45
Vomited 23.30
Tried queasy pop (NB. I have no idea what queasy pop is….) and flat lemonade 23.45
Day 2
Took anti sickness 08.00 with steroids with ginger biscuit
Headache & tired
12.00 anti sickness and steroids with ginger biscuits
vomited twice
Day 3
Tired and nausea
Banana 12.00 with tablets kept down
Hungry 3pm!
Diarrhea
Day 4
Tired and nausea
Diarrhea
Day 5
Dry toast and green tea
Tummy unsettled
nausea
Lucozade and chicken tolerated later in day
Very weak
Diarrhea
Porridge and high protein milk drink
Day 6
Tiredness / Weakness
Palpitations
Dry eye
Day 7
Leg muscle weakness
Tired/weak
Headache
Dry eye
Definite loss of eyelashes/brows
Emotional
Day 8
Muscle weakness legs
Reflux
Sore throat
Day 9
Legs better
Sore throat
Constipated
Tired
I chose Chemo 5 (of 7) because the side effects got worse cumulatively and this was when Jen’s vomiting was uncontrolled. As you can see, the list of symptoms doesn’t need to be high-brow prose, just enough for you to be able to reliably communicate approximately what happened and when. The oncologist can decide what’s normal or not and what can be done (if anything) to counteract or provide relief. Do NOT let your partner suffer in silence. What may seem like a normal reaction to you or her could be a potentially life threatening reaction to the practised eye. If you’re not sure, ask.
I say this, because I dropped the ball – specifically with this point in the treatment. Jen’s vomiting was on a Friday – I called the breast care unit on the emergency number they’d given me, but the person I spoke to, ‘L’, suggested I use the second drug Jen had been given. It didn’t work.
Subsequently, I let Jen deteriorate inadvertently because I neglected to ensure her electrolytes were kept up. She had plenty of fluids, but none that contained the vital minerals she needed replacing. The penny dropped on the Sunday when she’d become very, very weak. I went out and bought all the Lucozade, breakfast drinks and anything else I could find with electrolytes, short of the car battery, that I could find. She responded quite rapidly after that.
When we spoke to our key worker, I was told in no uncertain terms that Jen should have been hospitalised on an IV drip.
The two remaining EC treatments entailed a ‘special’ (expensive at £70 each) tablet that stopped the initial nausea, followed by an even stronger anti-emetic which didn’t entirely stop the nausea but did stop the vomiting.
Don’t make the same mistake I did. Uncontrolled vomiting, a high temperature, hell, almost anything, can be potentially fatal if it’s uncontrolled and not flagged up. If you’re uncertain, ASK!