If you want to know what happened, it’s all here.
This page sets out to provide information about the side effects I experienced during chemotherapy. One of the (many) problems with chemo is that everyone’s reactions are slightly different. When medical professionals tell you about side effects, they tend to tell you about those that are commonly experienced by many or most people. There are, however, rarer side effects and if you are a ‘need to know’ kind of person, the best thing to do is ask your Oncologist “what other or uncommon side effects could occur?”
The pictures above are designed to remind me to talk about the areas of my body that chemo affected, they act as a good indicator of the places you might experience some problems. Lets start at the top.
The Head: including ears, nose, mouth, eyes, brain and hair.
The most obvious side effect of many chemotherapy drugs is hair loss. My first chemo regime was FEC (5-flourouracil, epirubicin and cyclophosphamide). FEC causes complete hair loss. The hair loss began 3 weeks after the first treatment, just as I was about to undergo the second infusion. At first it was mild shedding, shortly afterwards it reached the point where I could grab handfuls of hair and it would come out in clumps. If you have long hair I would seriously consider cutting it short before chemo so that the process of losing it is less distressing (and less messy). By the time I had reached my third FEC treatment, almost all of my hair had fallen out. My hair did not begin to regrow during Taxotere chemotherapy. Now almost one month after my final TAX infusion I have hair growing at the sides of my head and a very fine, fuzzy covering on top. I estimate it will take 3 months for my head to achieve a reasonable covering of very short hair and six months before it will be long enough to create a pixie style again. This means I will have been bald or barely hairy for almost a year. (P.S. All your other hair falls out too).
Ears: FEC caused me to have very waxy ears about 2 days after each infusion. This is a side effect that was not mentioned in any of the literature I received. After a week, my ears would return to normal. Taxotere caused me to have occasional tinnitus for the first two weeks following an infusion and less than perfect hearing.
Nose: Taxotere created a lot of problems inside my nose. From one day post- infusion my nose became very bloody and would constantly bleed. Often it would become blocked with congealing blood. This situation would go on for two weeks following each infusion and gradually improve during week three. The chemo nurses advised that TAX damages the mucus membranes in the nose. Almost one month following the final TAX and my nose has returned to normal. My GP prescribed Naseptin cream (an antibiotic) to prevent the inside of my nose becoming infected. FEC altered my sense of smell. After each treatment I was convinced I smelt like rotting flesh and no amount of deodorant could take the smell away. After asking people near me to sniff me, I discovered that others thought I smelt fresh so the rotting flesh odour was a figment of my imagination/a change in my sense of smell. During TAX treatments my nose was too bloody to enable me to smell anything at all.
Mouth: FEC caused mouth sores and ulcers on my soft palate, at the back of my gums behind my wisdom teeth and on the back of my throat. The sores began two days after each infusion and lasted up to 10 days. In addition to sores and ulcers, my throat became swollen about 4 days after each treatment and continued to be swollen for up to 5 days. My GP prescribed Gel Clair to tackle the mouth and throat issues and this was very effective. Both FEC and TAX changed my sense of taste, during FEC some things just didn’t taste good whilst TAX made everything taste very bland. I needed Neupogen injections alongside my final Taxotere infusion. Its worth mentioning that Neupogen gave me incredible pains along my top and bottom jaws. This is a known but rare side effect and I was unlucky to experience it.
Eyes: I wear continuous use monthly contact lenses. I was unable to wear them during FEC because my eyes became very sensitive and watery so much so that it looked like I was crying but in fact it was just another chemo side effect. TAX caused my eyelids to swell extensively for up to a week post-infusion. I only wore contact lenses occasionally during my treatment and have just started wearing them again on a continuous basis one month out from my final infusion. I lost all of my eyelashes and eyebrows after my second round of FEC. They went completely and have yet to return. Although my lashes and brows are fair, their absence has made my face look very different. I have had to learn how to pencil in brows and use eyeliner to give the impression that I have lashes. Sometimes my efforts are more successful than others. Sometimes I just look odd. Hopefully this will not go on for too much longer now that chemo is through.
Brain: I encountered two side effects from FEC. The first was headaches. These began about 4 hours after each infusion and would last for anything up to three days. They were constant low-level headaches rather than the intense kind or those that come and go. As well as headaches, FEC also caused chemo-brain. No-one really knows how or why chemo-brain occurs but it does and it is frustrating. It involves becoming incredibly forgetful and mentally slow/confused. For me this involved forgetting where I’d put things, getting very tongue-tied and being unable to remember certain words or pronounce them properly. TAX did not seem to cause so much chemo brain and it did not induce headaches. I still do not spot my own typos and never had this problem pre-chemo.
Limbs and Bones
TAX caused pain in almost all of my bones and especially in my joints, ribs and legs. It also felt as if someone was stabbing me in the diaphragm. The pain began 2 – 3 days after infusion and continued for 2 – 3 days. Neupogen caused fairly significant pain in my sacrum, hips and femurs as well as my jaw. It also caused spasms in my lower back. These subsided very quickly once I finished the neupogen shots. TAX made my heel bones sore and caused occasional tingling and numbness in my hands and feet. During FEC, I did not feel that my stamina, strength or energy had diminished. TAX was somewhat different and its effects seemed to build up over time. Having now completed 3 x FEC and 3 x TAX, it is clear that I am nowhere near as physically strong as I was pre-chemo, I do not have the same level of stamina and my body tires quite easily.
Veins and blood
FEC damaged my veins quite significantly. Those used for infusions have become invisible in my hand, wrist and forearm. Although the veins can no longer be seen, they are hard and knotted. During FEC treatment, the veins used for infusions became sore from the point where the cannula was inserted all the way up to my shoulder. They were particularly painful in my elbow and made it difficult to reach for things, e.g. from top shelves. Once I switched to TAX, the pain in those veins gradually subsided however they are still not visible or usable for future infusions. TAX did not cause as many issues with my veins as FEC. Throughout my treatment my red and white blood cells and platelets varied a good deal. At no point during treatment did they reach their pre-chemo levels but they also did not go low enough to prevent or delay my next infusion. TAX was especially hard on the platelets and I found that I would bleed easily and profusely if I damaged my skin. I still bruise very easily one month on from completing chemo.
I have never really suffered with problems with my GI tract. I tend not to be prone to stomach upsets, food poisoning, bowel issues or sickness. Unfortunately both FEC and TAX played havoc with my GI tract. I will cover the challenges of FEC first. Unfortunately FEC made me impossibly nauseous so much so that I couldn’t sleep and actually considered deliberately making myself vomit to see if I could make the nauseated feeling go away. The nausea would begin about 2 hours following the infusion and lasted for anything up to a week. After my first infusion my Oncologist prescribed Emend. I told him I could not go through each treatment feeling so sick that I wanted to rip my own stomach out! I recommend asking for Emend if you must have FEC and start suffering severe nausea. Although it does not stop the sick feeling, it does reduce it significantly. TAX did not cause any nausea or sickness for me.
The next GI tract issue I experienced with FEC was sores and ulcers. As well as causing them in my mouth and throat, FEC caused ulcers and sores further down my GI tract. These created discomfort and added to the feelings of nausea. The internal ulcers seemed to heal more quickly than those in my mouth – typically within a few days.
A further side effect of FEC was constipation. If, like me, you have never experienced this problem in the past I can confirm it is very unpleasant to the point of being very distressing. In spite of following all the recommended procedures, e.g. drinking plenty of water, eating fibre, including a lot of fruit and prunes in my diet and using Senna, I still experienced some pretty awful problems in this department. I strongly recommend stopping this issue before it starts and I found the solution was Movicol (Macrogol). Unfortunately TAX seemed to cause even more problems than FEC and Movicol became my best friend for a week after each TAX infusion. It’s not nice to talk about this stuff but forewarned is forearmed – chemo seems to stop peristalsis in the gut which in turn stops food moving through. Having stagnant, stale food clogging up along a whole 22 yards of intestine is not a good idea so get some Movicol and keep everything passing through on a regular basis!
I found that both FEC and TAX caused swelling in the soft tissue of my hands a few hours after infusion and for up to a couple of weeks beyond. It was more pronounced on the side the infusion was given. TAX caused significant swelling in my ankles and also made my face and eyelids puffy. Dexamethasone, a steroid given to help the body cope with the effects of chemo, has given me a “moon face.” This is some form of soft tissue swelling that does not go down as the effects of the chemo wear off. I am told my face will return to normal in time so I will not look like Mr Staypuff forever. Dexamethasone also made me bright red, particularly on my face, neck and chest and sometimes this spread to my arms, torso and tops of my legs. The redness was not painful but it did make me look like I was badly sunburned for days at a time. Dexamethasone has also made me gain weight, especially the dosage required to see me through TAX. I’m not overjoyed about this because I don’t yet have the energy to work it off.
Chemo is very harsh on the skin – as the treatments progressed my skin became drier, less elastic and very thin in places. It was clear that the skin cells had stopped renewing because any damage would take weeks rather than days to heal. My face became incredibly dry as did my arms and legs. I tried using various moisturisers but none seemed to tackle the dryness sufficiently. I resorted to using oil in the bath and on the very dry areas of my skin, including my face. Bio-oil was good for direct skin application, Berts Bees body and bath oil was good for adding to the bath or applying directly. As well as drying my skin out, chemo also made me very pale and waxy looking. Other patients told me that I looked very unwell the first week after each treatment; it’s true, I did. Four weeks on from the final chemo and my skin is starting to recover a little, it is less dry and heals better than it has done in the past 5 months.
- Chemo has caused early menopause. For the most part I have not found this too troublesome but I do get hot flashes from time to time, especially in the evenings.
- Chemo and steroids caused insomnia. The steroids were particularly difficult – at times I would only sleep for 2 hours per night for a week at a time.
- FEC and TAX both caused severe night sweats from 3 – 7 days post-infusion. By severe I mean soaking wet and slimey – it was as unpleasant as it sounds.
- TAX caused spots around my mouth and nose two days post-infusion, these typically cleared up within 10 days.
- FEC and TAX both caused some irregular heart beats and palpitations. These still occur from time to time.
- TAX caused flu-like symptoms – sneezing, shivers, muscle aches, from 4 – 12 days post-infusion.
- TAX caused me to be unsteady on my feet from time to time, especially first thing in the morning.
- Since having chemo I am prone to fainting if I become over heated and I overheat much more easily.
I started chemo on 25th September 2012 and finished on 18th January 2013. Although these side effects probably look unimaginable, it is possible to come through them and I am sure in the not too distant future I will have forgotten most of them as our brains have ways of erasing information that no longer needs to be remembered.
I hope for anyone else who has to go on this journey the information above is useful – I wish I had been able to find something like this prior to my own chemo treatment so I knew what to expect beyond the basic information provided by the hospital.