FEC/Taxol - A Not-Too-Scary Side Effects Story

When I first knew that I had to face chemotherapy, I was scared.  I also craved information about the side effects - not the dry lists of possible effects provided by the manufacturers but real experiences written by real people.  So I searched on line and found myself trawling through discussion forums...exactly the place where people post when they have problems.  When I had read about the horrible side effects that some people suffer, I was very scared indeed!

Five months later I am, unbelievably, at the end of my chemo experience and I can say, hand on heart, that it hasn't been anything like as bad as I had feared.  Yes, there have been tears and tough days and fairly often I've crawled back to bed for an afternoon nap but I've managed to get out of bed every morning to get the kids to school and never been stuck on the sofa all day.  I've kept up with the kids, not missed one of their events, been out with friends and on holiday...more or less carried on as normal if sometimes at a slower pace.  I remember dancing at a Peter Gabriel concert half way through FEC and thinking hey, I can still do this!  I did have to give up my voluntary job half way through but that wasn't because I felt too sick but because the weekly demands of Taxol meant that I just didn't have time.

So in this post I have recorded my side effects in the hope that it might help others who are hungry for information as I was when I started.  My chemo regime was originally FEC-T (nine weeks of FEC followed by nine weeks of Taxotere).  But in the end my white blood cell count was too low to tolerate Taxotere so I had Taxol instead and the whole process took a total of 20 weeks. 

This is a not-too-scary side effects story.  Of course, chemo affects everyone differently.  My message is that it can be manageable...so don't let yourself get scared by the horror stories as I did.

My FEC was administered every three weeks and involved quite a long session at the hospital as each of the three chemicals had to be dripped in one after the other with a saline rinse to start and finish.  It took around 4-5 hours each time.  I had a PICC line inserted in my arm before the first session as FEC can damage your veins and had to have it cleaned by a nurse every week.  

Immediately after chemo I felt fine, but be aware that FEC briefly turns your urine red, or you'll get a shock when you go to pee!

I found that each three week cycle followed the same pattern with the first week always the  toughest, the second week offering a few discomforts and the third week being much better.

Insomnia was my biggest problem for the first three or four nights (caused by the steroids in the Medrol I had to take to stave off nausea).  I was twitchy and the blood pounded in my head so I took headphones, soothing music and a book to bed with me each night. 

The Medrol did its job and I had little problem with nausea.  I did have bad indigestion though, if I ate a proper meal then my stomach would sound as if new year fireworks were going off in there!  Eating small, regular, bland snacks for the first week helped.

After the first week, the mouth ulcers started and my mouth felt raw and exposed (I ate a kiwi one time at this point - really bad idea).  The indigestion settled down by this point but I suffered with some constipation.

My hair fell out though it took longer than my oncologist had suggested, he said it would be around day 14 of the first cycle but in fact I didn't lose a single hair for 27 days when it suddenly all fell out in the shower.

My periods carried on for a couple of months before stopping.

The problem that dogged me all the way through chemo was my low white blood cell count.  Very low counts are a worry as it makes you vulnerable to infection which can be serious, though luckily I avoided getting sick.  But it can also mean that you have to postpone chemo for a week to allow your body to recover.  This can be terribly frustrating as it makes it difficult to plan - suddenly holidays have to be cancelled, arrangements rearranged, all to accommodate a new schedule.  This was perhaps the biggest lesson of chemo for me, that things don't always go to plan and you just have to be very flexible.

The biggest change of plan came at the end of FEC when I should have moved onto three-weekly Taxotere.  My white blood cell count was, however, too low to tolerate Taxotere and my only option was to take Taxol instead.  Unlike FEC and Taxotere, Taxol is administered every week.  So suddenly I was faced with nine weeks of hospital visits every single week. This is when chemo really did start to take over my life, just because it took so much of my time.  It was no longer possible to go away over Christmas and New Year and I had to give up my voluntary job.  On the other hand, I have heard that Taxotere can be quite severe and Taxol was not so tough.  So perhaps it was a good thing in the end.

And at least Taxol is much quicker to administer than FEC - on a good day I could be done in 2-2.5 hours.  And I had no problem with my appetite on Taxol - the weight I lost on FEC soon went back on!

In the beginning, Taxol was reasonably easy.  I started with flaming red cheeks for a day which gave the weird feeling that I was constantly embarrassed about something.

Hot flashes caused some problems sleeping (duvet off...duvet on...duvet off...) but on the whole I found that the pounding head and twitchiness was much better than on FEC (despite still having to take Medrol, go figure).

Leg, chest and arm aches worked their way through from about day three to six, for the first few weeks this was no worse than as if I'd done an over strenuous work out.

I had some tingling in fingers and toes but luckily this never progressed to significant numbness. 

I found myself getting short of breath, sometimes with chest pain. This developed into an intermittent cough which was apparently due to fluid retention in the lungs.

Low white blood cell counts continued to be a problem.  Once I was neutropenic (extremely low count) but I carried on as normal including spending an evening in a theatre watching my son perform in concert while people coughed and sneezed around me (I figured that nothing could be worse than going up and down in a crowded hospital lift so why not?).  Fortunately I stayed well (lots of anti-bacterial hand gel).  But I did have to have a course of 5 Neupogen shots on two occasions to get my count up and once chemo was delayed by a week again.  The Neupogen caused me one day of severe bone pains...but these promptly vanished again.

Oddly enough my hair started to grow back on Taxol, now I have a few millimetres soft fuzz on my head.  But my eyebrows and eyelashes survived FEC only to start to fall on Taxol and are both very patchy now that I am at the end.

My nails became discoloured but never flaked or came off - I wore nail varnish all the way through as advised so perhaps this helped.

They do say that Taxol is cumulative, however, and I have to admit noticing a decided turn for the worse in the last three sessions.  The aches in muscles and bones became bad enough to keep me awake at night and I started taking paracetamol before bed.  Combined with increasing hot flashes and endless irritating itching around the vagina (caused by dryness), insomnia became a problem again.  The symptoms started to last for longer until I would start the next cycle still feeling achy from the previous cycle.  By the very end, I felt weak in my arms and legs and struggled to make it all the way up the stairs without pausing for breath.  But at least by this point I knew it was nearly over.

All the way through, I have tried to eat healthily, exercise, drink lots of water and avoid caffeine and alcohol.  I think it helped. 

If you're starting down the chemo road, take heart.  There's no denying that it's a long haul and there will be some downs along the way.   But life carries on...just make sure you celebrate every stage of the way.  

Weird Stuff on FEC

After a while, it gets difficult to know whether the weird things going on with my body are down to the chemotherapy or not.

The other morning, I got blearily out of bed and went to say good morning to the kids when I noticed them looking oddly at me.

“Mummy, you have blood round your mouth,” my daughter told me anxiously.  I rushed to a mirror and, sure enough, black blood was caked on my lips and my front teeth.  My mouth and tongue were, as usual at that point in the FEC cycle, pretty tender but there was no obvious cut or other source of the blood so I couldn’t work out where it had come from.  Unless, of course, the FEC causes vampiric tendencies and the blood on my lips wasn’t mine...

I cleaned it off and, to everyone’s great relief, it didn’t reappear.

Another unexpected side-effect is the way my heart rate zooms up when I get on the cardio-vascular machines during my exercise class.  I can be on the bike, legs happily pumping away and feeling that I can go faster, when the heart rate monitor will start flashing and beeping because my heart rate has hit 160.  My physio explained that this is because I have a low red blood cell count which makes it harder for my blood to carry oxygen around my system which, in turn, puts stress on my heart to beat faster.

“Respirez!” she yells at me at regular intervals, and so I have to concentrate on breathing heavily or I can’t get any speed up at all.

Which brings me to how incredibly cold I feel at the moment.  I’ve always been a bit hopeless with the cold but now I can be wearing multiple layers and still find myself shivering uncontrollably.  I’ve lost a few pounds, and so am a little less padded, but not that much.  I wonder if the low red blood cell count affects the body’s ability to stay warm as well.  Who knows?  Maybe I always shivered this much and just never noticed so much before.

Because it is, inevitably, difficult not to keep track of every headache, stomach grumble, achy limb and sore gums which might have happened before and just been forgotten but now is laid at the door of chemo.  I can just see myself, ten years from now, shivering in some bitter winter and saying, “I’ve never been able to stay warm since I had chemo...”

Let’s just hope that my husband sleeps soundly and doesn’t find teeth marks on his neck in the morning.

Baldie One Boobed Babe Goes Swimming

This week I went swimming again.

Like most things since the diagnosis, a visit to the pool is rather more complicated these days but at least I’m allowed in the water again.  For the three months since the operation, I’ve been banned from so much as a hot bath, first because the mastectomy scar had to heal and then because I had a PICC line inserted for my three sessions of FEC.  So, sadly, even though we did make it to our special place in Portugal for a few weeks in the summer, I had to watch enviously as the kids swam in the river and the sea.

But now I’m back.

So, permission granted.  Next thing, logistics.

For my baldy head, I wore a swim cap.  This worked remarkably well, my husband swore that you’d never know there was no hair underneath even if I did look a bit of a prude in a pool where swim caps were not mandatory and only the old biddies wore them.  I wore my cute peaked hat for the walk down to the swimming baths so that I didn’t have to stuff my wig into my swim bag and revelled in the fact that I didn’t need to bother with shampoo and a hairbrush for after the swim.

For the missing boob, a gorgeous new swimming costume in shades of pink with a pocket for the prosthesis.  I swear that this is the loveliest swimming costume I have ever possessed (though I have to confess, it was also twice the price of any previous cozzie but these days I feel I deserve to be spoilt a little.)  Dare I say it?  I actually feel quite sexy in this costume which is quite something for a bald lady with one boob.

And yet it is also comfortable, in fact I barely noticed the prosthesis, and I felt totally secure when swimming (which is a relief because I have never forgotten the story about the woman who went swimming and her prosthesis slipped out and sank to the bottom – she eventually found it being used as a Frisbee by two boys.  She was so embarrassed that she went home and abandoned it.) 

I swam, sat in the whirlpool and even did the super-enormous slide with the kids (one hand firmly on my cap when I swooshed into the pool at the end so I didn’t frighten the little kids with an accidental view of my baldie head). 

There was only one place I felt held back by the consequences of Cancer. The pool we visited happened to be in Germany, so of course the communal showers afterwards were full of uninhibited, utterly naked German ladies of all ages (my nine-year old daughter watched with a horrified expression and eyes as big as saucers).  Needless to say, I was not about to show off my mastectomy scar and so I showered demurely in my costume and swim hat among the naked ladies.

But, honestly, would I have thrown caution to the wind and stripped naked with the rest of them if I had not had a scar to hide? I guess we’ll never know.

And, to her enormous relief, nor will my excruciatingly embarrassed daughter.

My Liver on FEC

What did I do with my time before I spent it all at the hospital?

Yesterday I was up for another liver MRI as the first one in June had shown an odd lesion.  Probably benign, they told me, but we should check it again in a few months.  Don't worry.

Don't worry?!  How can you not worry about the fact that the cancer might have metastised to the liver?

I was no less worried after spending the morning at hospital: the MRI went on for ages with the machine moving me forward and backwards for 'just a few supplementary images.'  Clearly they had found something.  So I was very nervous indeed when I went back up to hospital today to meet my oncologist and get the results.  

The good news was very good - the lesion is benign.  It was only when the diagnosis was confirmed that we realised quite how worried we had been about the alternative.

Unfortunately, nothing with cancer is ever QUITE that straightforward.  The MRI also showed odd water retention around my liver.  That can be an indication that the chemo has caused a blocked vein in the liver which is, apparently, treatable, but could mean a few days in hospital.  But I hadn't had any pain and my oncologist pointed out, no-one usually does an MRI of a liver in the middle of chemotherapy.  So it could be that it is normal for a liver to look like that a few days after a dose of FEC.  We have to look into it, just in case, he told me and he was most apologetic though I could tell he was secretly delighted to have a chance to learn more about the effect of FEC on a liver.

 So off I trotted for an ultrasound and a full set of bloods.  What's a trip to the hospital without someone sticking a needle into you anyway?

Incredibly, they managed to do all the test within a few hours and my liver got a clean bill of health.  So, I have spent two whole days up at hospital just to work out that there wasn't a problem in the first place... but that's just fine.  

I don't have cancer on my liver.

But you never know, perhaps my liver will appear in some cancer reasearch journal one day under the effects of FEC.

Why Can't I Sleep After FEC?

Every time it's the same.  The first few evenings after FEC I'm falling asleep on the sofa by 9pm.  I go to bed and fall straight asleep...only to wake at 1am with the blood pounding in my ears, agitated and unable to lie still.  This lasts for a few nights, then seems to wear off and I can sleep again.

I had assumed that this was a side effect of the FEC that gradually wore off.  But it turns out that it is a side effect of the drugs that help you cope with the side effects...  Medrol is the culprit, taken to prevent nausea but creating insomnia.  It fits perfectly: I take Medrol for the first four days and then I stop and that is just when sleep returns.

This, I thought, was good news because I am now done with FEC and the next drug, Taxotere, is not supposed to induce nausea.  Then the oncologist told me that I would still have to take Medrol but this time to prevent allergic reactions.  It is, apparently, mandatory.

Oh well, at least I know what to expect now.  I'll be ready with my soothing music, glass of water and book by the side of the bed.  

I wonder if they will give me drugs to deal with the side effects of the drugs they gave me to deal with the side effects?

Those Pesky White Blood Cells

This week was due to be chemo week so I did a big shop, made sure there wasn't too much on at the weekend, organised a pick up from school for the kids, arranged for a friend to pick me up from hospital and got friends ready to do meals for the week.

 

Then I went to hospital to have my blood test and spent the morning hanging around to see the doctor...only to discover that my white blood cell count is too low.  So I have to wait and do it all again next week.

I must admit, I cried.  Actually I sobbed.  I think it is the realisation that I am totally out of control here: no matter how organised I am for each chemo, I simply cannot control how my body will react to the treatment.  That means I can't plan with any certainty.  My whole diary has shifted: a big night out now falls right after chemo instead of on a 'good' weekend, our half term holiday plans are in disarray, chemo has crept closer to Christmas and might even end up going on into the new year.

And it seems that this is a very common side effect, most people seem to find that they get delayed by a low blood count at some point in their chemo treatment.  There's not much you can do about it either (except take precautions to avoid things getting even worse with an infection while you are vulnerable).  If you Google, you can find suggestions of supplements that might help but with no real weight of science behind them, all you can really do is wait until your white blood cells recover by themselves.  Rest.

I hate that.

Of course there is also an injection that the docs can give you post chemo to help your white blood cells recover faster.  But I made the mistake of reading the cancer chats where people have reported the agony in the bones that can follow (always a mistake reading the chats, people never post when it didn't hurt).  So I'm now resting up, hoping that my pesky white blood cells will sort themselves out by themselves.

I'm learning that having Cancer means that I just have to be very flexible.  

I'm out of control... and clinging on for the ride.

Hooray, My Hair Fell Out!

When I first got the Cancer diagnosis, almost my first fear was that my hair would fall out.  Why is it that so many of us have a terror of the moment we lose our locks?  Is it a sense of being robbed of our identity?  A fear of having to publically declare our infirmity?  The reality that it might be last time we have lovely, long tresses as it will grow back slowly and possibly grey?

In any case, I never guessed that when the moment actually came, I would cheer with delight.

You see, I decided that it would be simply too distressing to wait until my hair came out in clumps so I opted to have it shaved in advance.  Despite what followed, I'd still say this is the best way to deal with a crappy reality: take control, choose your wig and decide the day you are going to start wearing it.

There was only one hitch: my hair refused to fall out.  My oncologist told me that it would start to fall around 14-15 days after my first chemo.  It would certainly be gone by the time I had the second round, he said.  So I went on day 10 and had the chop.

And it didn't fall.  Worse, it started to grow, so the bristles on my head became needles that stuck painfully into my scalp and caught on my wig and scarves.  What to do?  Should I let it grow, suffer the growing pains, only to have it fall out eventually anyway?  Or should I go and have it shaved again?  Was it possible that I would never lose my hair??

Then, twenty-seven days after my first chemo, I was in the shower and ran my hair over my bristly head...and it came back black with hair.  In one shower, almost the whole lot went down the plughole.  Suddenly my head felt smooth and comfortable again...and I was delighted.  

So now I'm properly bald and I feel vindicated in having had the shave (even if it was a little premature).  I can't imagine how awful that shower would have been if it had been great handfuls of wet hair blocking up the plug hole and sticking to the walls instead of mini-pins of hair.

Given my hair was so resilient, I'm now keeping my fingers crossed for my eyebrows.  A girl can live in hope, can't she?  But I might just get an eyebrow pencil ready anyway...