Side Effects and How I Coped

How Did I Feel?

I had to take Steroids on the first evening following Chemo, and for the next 4 days.  My face felt like it was on fire, and looked like it too.

Feckin’ FEC

FEC chemo itself during specific days of the cycle gave me the following and here’s what I did to reduce the effects.

Days 1-5

  • Dizziness:     Closing my eyes and sitting – logical really…
  • Increased diarrhoea:     Hospital armed me with Loperamide (Imodium) as I suffered with IBS anyway.
  • Nausea:     When it got too bad I took Metoclopramide, the anti-sickness tablet I had on the day of chemo.  Everyone thinks Chemo makes you really sick.  It can in some people but as I found, this drug worked for me and I was never physically sick.
  • Sleepiness:     I didn’t drive anywhere!  I just rested at home and everyone carried on around me lol. It felt like I was sleeping all the time though.
  • Hot Face:     Cold tissues, get a fan – electrical for the room, hand fan for going everywhere else.  The following cycle my face was swollen due to the steroids.  I fondly referred to myself as Moon-Head after a few more cycles
  • Operation scar pain:     I had this most cycles and didn’t understand why it was fine and now it was painful.  The reason was that the chemo drugs go to the weakest parts of the body and it was making the operation site sore.  This is quite normal.  Maybe.  But bloody painful.  Codeine was the drug of the day for this, plus massage of the area with E45 cream.
  • Emotional:     Well.  Not a lot you can do about this other than shut yourself away and cry.  I didn’t have any energy to do much else.
  • Headaches:     I was advised not to take Ibuprofen so Paracetamol it was.

Days 10-20

  • Hissing ears:     The Oncologist had not heard of this like I was describing.  We thought it was a one off but I had it the same time every cycle, which came on quick and faded off after about a week.  Very odd.  Could have been some sort of tinnitus.  Annoying.

Days 14-21

  • Hair Loss:      This happened very quickly. From day 14 to 21 it thinned to hardly anything left. I’d cut my hair to a shorter length and the hair started to thin underneath first.  Around day 19 I decided the scarves now had to be worn.  See Hair Loss from Chemotherapy for full details.

Oh and rest!  If I felt like lying down I did (well, while the children were at school of course.  When they got home it was ‘hi Mummy, how are you feeling? What can I eat I’m starrrrrrrving!! How am I getting to Swimming?  Who’s picking me up from Scouts?’

Over the following two cycles of the FEC, I had the above each time and a pattern emerged.  The Bone pain came on during cycle two and I struggled with this.  It was like there was a constant weight on top of them.  That together with restless legs all night, meant my poor Husband staying downstairs on the sofa just to get a good night’s sleep.

However the good thing was I was still able at this point to go into the office and work.  This helped again with the ‘ol mind and gave me a bit of sanity.  Or insanity if you knew the people I work with!

The final FEC cycle 3, I was pretty wiped out for the first week and into the second, as the drugs built up in my body.  I felt out of breath more and the Asthmatic cough seemed worse so I just took my inhalers.  I also felt more nauseous that first week so had the Metoclopromide on hand.  The operation site soreness was painful and I had taste issues, but with all of that they didn’t last long, only a week.

Chemo Quotes

At the end of the FEC course, I went to see one of the Nurse Practitioners at the hospital in the Cancer Centre, to talk about the Docetaxel that I was about to start.  We discussed all the above and she said I’d been really unlucky with the infections and that added to the stress of chemo.  The Chemo itself actually didn’t give me too many issues – certainly not for long each cycle anyway.

I burst into tears.  I didn’t know at the time what was ahead but I’d been told by a couple of people who had gone through it before me, that I was over the worst and that the Docetaxel was a walk in the park – I’d be fine.  The Nurse warned me of a few different side effects but also said that it doesn’t cause nausea so they don’t give you any anti-sickness tablets like before.

This in itself was quite encouraging, as I tend to be able to cope with things better if you don’t have the nausea – as I discovered when I was pregnant!

Just think you’re half way through – you’ve got this far, you can do it.  Yeah, you’re not in this body!

FEC Chemo

And Just For Good Measure…

Just for good measure I developed a sore throat at the end of the first week, which immediately turned into a chesty cough.  But it seemed worse than a usual cough, and I felt quite unwell.  My temperature had gone up too.  Because this was at the time of the Chemo cycle where you are most prone to immune system issues, the hospital tell you to call the Chemo line to discuss it.  And DON’T BE AFRAID TO CALL!

So I called, and they asked me to go down.  They took bloods, Urine Sample; I had a Chest X-ray too.  That confirmed a Chest Infection rather than just a cough, so I was prescribed Penicillin, additional Steroids (Yay!) and two Sprays to use. Wow. I was so well looked after and dare I say jumped the queue for the Chest X-ray, as they needed to confirm an infection and get it treated.

The cold came out and a week later the Chest Infection was cleared and I was left with….drum roll please…. Sinusitis!!  Chemo line advised me to get a different antibiotic this time from GP, so was on that for another 7 days.

My immune system had lowered and I just had some bad luck with the germs going around.  But that on top of the actual Chemo side effects which actually weren’t THAT bad that cycle, made me feel worse.

Cycle 2 also brought on another Chest Infection on day 14.  I was given another lot of Penicillin and additional Steroids and told to increase my inhaler dose.  They were right about the Chemo going to the weakest parts of the body.  It brought on my childhood Asthma and caused chest infections!  Grrr.

Just when I thought I could last until cycle 3 without any more issues, other than extremely dry mouth and loud hissing in my ears, my temperature went up again on day 20 to above the safe level, and I called my ‘friends’ (felt I could call them this, the times I’d been in!) and down to the Unit I went.  More Antibiotics this time for a wee infection.  Oh for *@#!&$ sake!!!

I bought Cranberry Juice as I wasn’t sure if the wee infection had quite gone away with those antibiotics.

And guess what? – Nope it hadn’t.  It got worse again and another set of antibiotics was given.  So every – bloomin – cycle – the drugs decided to bring on all these things as the immune system dipped.

FEC CHEMO

Docetaxel

Steroids began the day before Chemo for this, but to be honest, I’d never really had a break from them so far, so my head was probably going to be size of a melon by the time I finished!

Days 1-6

  • Dizziness/Light-headed:     On the way home I felt very dizzy.Steroids Chemo
  • Sleepiness:     That evening of the first dose, I just wanted to sleep.  I felt quite rotten so laid in bed watching TV on and off.
  • Hot Red Face:     The steroids made me feel like my face was about to explode!  Electric fans on constantly.  Moon-Head was on fire!
  • Tasteless Mouth:     Every cycle I lost my taste.  My mouth was burning.  I was eating thick Marmite on toast, hot chilli flavour crisps, and could hardly taste them.  Eating bland stuff just felt all slimy in my mouth. Horrible.  Ice lollies however were bliss!  And Maoam chewy sweets were great, got the saliva ducts going and could taste.  But the mouth had turned white.  I didn’t have any ulcers, as they warn you about, but it was Oral Thrush unfortunately.  So I was advised to use Corsadyl mouthwash twice a day and given some foul drops for the mouth. Yuk.

Days 7-14

  • Peripheral Neuropathy:     Burning pain /numbness of fingers and/or toes.  The ends of my fingers were burning and the soles of my feet were too.  There is nothing they could do for this and it does pass, but I couldn’t walk across the room without being brought to tears, so had to just ride the pain.  My pain threshold HAD to be higher now, surely! Lots of bowls of cool water…
  • Bone Pain:    This was the worst part of the Chemo by far.  The pain had got worse that first week and into the second.  I took pain killers but I developed flu like symptoms. It was from this I called the Hotline but I was taken into Hospital.  See Neutropenic Sepsis below.
  • Chemical Burns:  Not heard of this at all before or during.  Very painful.  Appeared on my face and mainly on the back of my hands during cycle 5 only.  Hydrocortisone cream cleared this up.

After Chemo

  • Nail Loss:     I thought I’d escaped this.  Covered in black nail varnish, my toes hardly saw the sunlight even when it was June.  My fingers of course I wasn’t going to wear gloves the whole time, so they had a lovely bright summery black too painted on them.  This was all to reflect the sunlight as it reacts with the Chemo drugs and you can lose your nails.  The thought of this made me feel physically sick.  A couple of weeks after the final dose and they started to go.  See Nail Loss During Chemo article for the full story.
  • Chemo-nesia:     Brain Fog. Forgetfulness. Communication problems.  Basically, the brain is thinking of one thing, you say another, or can’t get the words out, OR the mind is completely blank.  So very very frustrating! Funny that the swear words are still forthcoming through – a good way to express the frustrating I found. Out of range of the children of course!

Neutropenic Sepsis

I felt very low.  I was getting shooting pains through my legs, my mouth was so sore, and I was generally worn out.  I felt fluey and kept an eye on my temperature.  Unfortunately the body couldn’t cope with what was going on and on day 7 of this first cycle of Docetaxel, I was admitted to the Oncology ward at Poole Hospital with Neutropenic Sepsis.

What is Neutropenic Sepsis?

Chemotherapy can reduce the number of white blood cells (Neutrophils) produced by the bone marrow.  These white cells are essential for fighting infection. If the number of white cells in the blood is low, this is called Neutropenia.  Therefore patients with Neutropenia are much more liable to infection.

If an infection does develop, patients can become seriously ill much more quickly than normal. When this happens it is called Neutropenic Sepsis.  Patients will need to be admitted to hospital immediately, and the infection treated with antibiotics.

It is important to state though, that patients can be Neutropenic, and their levels be very low, but NOT develop Sepsis.

What happened in my case?

I didn’t know at the time how serious it was and they were desperately trying to find out where the infection was.  I had a chest x-ray, they took blood samples, urine sample, and pumped me full of all sorts.  I ended up staying in there for 7 days.  My family were so worried, and my children were scared I wasn’t going to come out.  When eventually I was able to get up and walk about, I was like an old woman shuffling along, I have never felt so ill.

But I had expert care.  The nurses were amazing.  Every one of them had a smile for me each time they came to the bedside.  And this was regularly.  Anything to make me comfortable.  I was in a nice bay and opposite me was a lady who had been in for a few days already and we got chatting.  In fact we became friends and still keep in touch now.

How did they prevent it from happening again?

Seeing the Oncologist before cycle 5, she was really concerned that I’d had this and reduced the dosage by 25% to see if that made a difference.  It did thankfully.

However, they used that reduced dosage in the last Chemo cycle, but for some reason my levels plummeted again and I was taken in as I went Neutropenic for the second time.  Fortunately this time rather than spend time and money on tests to see where the infection was, they put me straight on the heavy stuff and got the antibiotics into my system quickly.  I was only in hospital for 3 days that time.

Very scary times.