Thank goodness last week is over… believe me when I say chemotherapy is a bit of a bitch.
To be honest I probably shouldn’t complain because compared to some people I know my side effects are not so bad. For instance I have not had any overnight stays courtesy of the NHS, or had any of my chemotherapy sessions delayed. Still, it’s not much fun.
When I was first diagnosed (well, actually it was the second time – when I got ‘upgraded’ to invasive cancer) I obviously did a bit of research into what type of chemotherapy I might have / how long it would go on for etc. I discovered that the majority of people on the ‘Breast Cancer Care’ website forums seemed to have a regime called FEC-T, 6 cycles in total. There are various other regimens but this is far and away the most common as far as I can tell. So it wasn’t a surprise when my Oncologist confirmed that I would be having FEC-T… but lucky me I get 8 cycles instead of 6! Goodness, what a treat. I did ask why this was and whether it was unusual but apparently it is just what they do at my hospital. I have since met and spoken to other ladies having 8 cycles but we do seem to be in the minority. In a way I suppose I should be pleased – more chemotherapy has got to be more effective… but it is a bit galling to be three sessions down and everyone else can say ‘halfway done’ but you can’t.
Any-hoo – FEC-T:
‘Tis a game of two halves – first I will have four lots of ‘FEC’ and then I will have four lots of ‘T’. As always Macmillan have the obligatory information sheet but the basics are –
F = Fluorouracil
E = Epirubicin
C = Cyclophosphamide
T = Docetaxel – also known as Taxotere.
Each half has its own unique side effects so just as you are getting to grips with FEC it all changes and you get to experience new and unexpected ways of feeling like arse.
Having met with the Oncologist and agreed to go ahead with this regimen (as if I was going to say no!) the next order of business was to have an ECG scan and meet with one of the chemotherapy nurse for a bit of an intro to the whole business. The ECG is needed because the drugs can have a negative effect on your heart and they need to check there is nothing dodgy going on before hand. I foolishly though that the ECG would be one of the procedures that wouldn’t involve me stripping off (nothing like being told you’ve got invasive cancer and then having to flash your boobs at everyone in the room so they can ponder over the scar from your failed operation) but I was wrong.
It actually involves having lots of wires stuck to your chest and legs so involved even more stripping off than normal. Fabulous!! Oh well, the good news is that no one has mentioned it since so I’m assuming my heart works ok.
The first meeting with the chemotherapy nurse was actually fine. I really like the nurse I spoke with – Maxine – very down to earth and practical. She was also very complimentary about how I was dealing with things and approaching the chemotherapy which was nice to hear. We talked through how it would all work and the billions of possible side effects I could experience. It did all get a bit overwhelming at one point – purely based on the volume of information… and we only really spoke about FEC as agreed the ‘T’ information could wait until nearer the time of me actually having it. We also talked about the cold cap and I said I would like to give it a try. This is a method of attempting to keep some hair by essentially freezing your scalp to minus five degrees. You have to wear the cap for half an hour before treatment, while the drugs are administered and then for 2 hours after the Epirubucin has been administered.
I had my first blood test during this appointment and also signed the paperwork to say I agreed to the treatment. Maxine gave me various leaflets, a Chemotherapy Record, booked me an appointment to see the hair loss advice person (I can’t remember her official title, let’s just call her the wig lady) and agreed the date of when I would start – 30th November 2012.
I was also given two medical alert cards (one is attached to the record book, one to carry round with me) with emergency numbers on. I am supposed to wave this at paramedics / doctors / A&E if necessary and in my area this will get me prioritised and not made to wait with the riff-raff! Although we talked about a lot of side effects the real ‘take home’ point was that if my temperature went above 37.5 degrees C I had to hightail it to A&E. I was told this approximately 400 times… the Oncologist had mentioned it once or twice too.
This is my record book – I assumed everyone would have one of these but I’ve since discovered (via an online group) that these are not used in other areas:
You can see the medical alert card at the top too. It has various pages of information about my diagnosis and treatment schedule – the nurses fill it in each session with my blood test results etc and there are bits about side effects / preventing infection / appointments etc. I think it is a good record book and actually quite helpful in terms helping you remember the sea of information the nurses give you about side effects and what to do. Maxine was also very helpful and wrote down some things I could ask the GP for if necessary – I have since used these notes! It is a shame not everyone gets this. Here is an example of one of the pages – common side effects with a RAG status basically of when to worry:
I was also introduced to the additional drugs I would be given during this introductory talk – although these have since changed. Again, on speaking with other ladies this seems to vary from place to place. I have 5 days worth of injections to stimulate the production of white blood cells – these start on the fourth day after chemotherapy. Having done IVF I am an old hand at injecting myself but I know other ladies get the district nurse round to do them. I also have a variety of anti-sickness medication and some steroid tablets to take in the 2-3 days directly after chemotherapy. My anti-sickness medication has become progressively more hard-core as unfortunately I have experienced quite bad sickness. I now have an anti-sickness pre-med via infusion, and three different types of anti-sickness tablet including to wonderous ‘Emend’. This is apparently very expensive so they don’t just give it to everyone. You have to vomit quite a lot before you get Emend!! Predictably all these drugs come with their own side effects – steroids keep you awake, the anti-sickness tablets cause constipation, the injections cause aching bones etc etc…
I would say the sickness has been one of my worst side effects – on my second session I threw up all night, once an hour like clockwork. So that was nice. The other biggie has been hot flushes – although these may be more to do with an injection I am having every 28 days to try to help preserve my fertility. The drug is called Zoladex and essentially shuts down your ovaries and puts you into a chemically induced menopausal state. Chemotherapy causes hot flushes too though so I think I am getting a double whammy and I’ll be honest, they are driving me crazy and also really interrupting my sleep. Other side effects of note have been:
- Hair loss – body and head hair
- Dry Skin – particularly on hands and randomly, under armpits!
- Foggy brain (technical term) – difficulty concentrating / remembering things
- Manky mouth / mouth ulcers
- Aching bones due to the white blood cell boosting injections – these work on your bone marrow which is mostly in your back and long limb bones. I notice my arms aching.
I tend to feel like crap for a week. It’s very much like having a bad hangover without having had any of the fun. I have chemotherapy on a friday and by the following friday I am pretty much ok. The tiredness is an ongoing problem as I have interrupted sleep due to hot flushes all the time. The hair loss is an ongoing process as the cold cap doesn’t work 100%. My hair started shedding about 16 days after my first session and has carried on to varying degrees since. Bloody hair everywhere – but only about half maybe still left on my head with a lovely bald patch on my crown. I’m wearing a lot of headbands these days.
Mentally I am definitely very down during ‘recovery week’ – everything is such a struggle and feeling like poo physically uses up a lot of your reserves. Day five after chemotherapy is my worst day – it’s all got a bit too much and I think I crash a bit at this point as swap steroids for white blood cell boosting injections. I am still working though and other than the actual chemotherapy day I only took one day sick on my first session and two on the third session. My second session was just before christmas so I had taken holiday anyway. To be fair I’m probably not all that much use at work during recovery week but I find it more depressing being home alone than being at work and feeling crap. I am just taking it session by session and will take more time if I need to in future.
As I said though I am very lucky not to have experienced worse. I know people who have been admitted to hospital on every cycle and / or have had lots of delays. I would hate to be delayed and have been very pleased with my pre-chemotherapy blood test results so far. Whether or not you can go ahead with your next session is usually determined by your Neutrophil levels. These are the most common type of white blood cell and are very important for fighting infection. Chemotherapy batters your bone marrows ability to produce these cells and your body needs to get back to a certain level before it can take another battering. Apparently the ‘normal’ range for neutrophils is 2.5 – 7.5 billion per litre of blood. If your levels are very low (under 1.5 seems to be considered low – under 1 is definitely not good) you are ‘neutropenic’ and your next session will be delayed until things improve. Worse though – minor infections can become very big issues if you are neutropenic.
I am so glad that mine have bounced back each time – this is how things have panned out so far. The key number is next to ‘Neuts’ – they obviously do look at the other information too but I do not know what would be considered problematic for platelets / hemoglobin etc:
So far so good and long may that continue!!
I have definitely noticed that I’m not bouncing back as quickly after the third session – I think the cumulative effect of the chemotherapy and the lack of sleep due to the hot flushes came to a bit of a head and on the tuesday after session 3 I had to take a second day off work and literally zombified on the sofa. I couldn’t even deal with watching tv – I just lay there in silence resting all day.
I think these middle lot will be the worst mentally too as it seems such a long way still to go and I have the fear of the unknown switching to Tax (which is what we chemotherapy patients like to call Taxotere). The good news is that the sickness and nausea should no longer be a problem. The bad news is that Tax has new and interesting side effects such as causing aches like you have the flu and making your nail beds lift and your nails fall off. It is also likely to make my eyebrows and eyelashes fall out so I’m going to have fun trying to cover that up!!
I will report back once I’ve started Tax though – maybe it will be an improvement on FEC. Either way I will still be glad to see the back of FEC after my next session.
Frankly, it can FECing FEC off now!!