First FEC last Monday (30 June) - is this the calm before the storm?

Hello!

I had my first FEC on Monday (30 June) and since then I’ve been patiently waiting to see what happens. Is this the calm before the storm? So far I’ve felt fine - been a bit sleepy (slept for an hour and a half yesterday afternoon and then had 11 hours sleep last night) and had a hot flush yesterday afternoon (it was a hot day, but this was more than that) - took temperature which was fine and after about 5-6 hours it passed. Not sure what to expect - I was expecting to be sick etc, but not sure whether that’ll suddenly come on in the next few days. I’m 32 and previously very fit and healthy so don’t know whether this is helping me cope with it all? I know everyone is different, but just wondered what your experiences were?

Thanks
Nel

HI Nel,

I was on FEC last July to November and was quite sick with it. I’m trying to remember which days it affected me most! I think I was sick for the first couple of days ( I used to have it on a Tuesday) then the sickness would wear off and I would be quite achy over the weekend. Sounds like you are coping well with it so far so lets hope it stays that way!

Let us know how you get on!

Sinead x (I’m 32 too!)

I never felt sick (medication worked well for me), felt OK first two days, but then had a few days of tiredness. My main problem was heartburn and constipation, and horrible taste in mouth… and, of course, the loss of my hair about 12 days after starting FEC. Once the first week of treatment was over, I was fine for the next two.

Taxotere was another story though :(((

Hope all goes well for you Nel!

xxx

Hi Nel,

Same for me, I did well with the FEC, apart from heartburn which I got tablets for, and the hair loss of course ( are you getting ready for that? ). I did get fluid retention in the ankles after second and third fec, so tried to put feet up in the evenings.

I’m afraid to say my reaction to the taxotere has been much harder, like justme above. Still, we can’t expect all plain sailing I suppose, and forewarned is to be forearmed.it just wipes you out more, and affects your tastebuds more.That shows it’s doing it’s job anyway! Get your jobs done now while you’ve got the energy, and go out and enjoy yourself! Hope it continue to go really well,Nel.

Ann

Hi Nel

Had my first FEC just over two weeks ago, felt sick the first night but took the back up sickness pill as well as the the ones I had to take, that seemed to do the trick, the worse thing was a banging headache, but have been told to start taking paracetamol the morning of the next one which is on tuesday, Shaved my hair yesterday it comes out with a bit of coaxing at the moment but no doubt it will start falling soon. Small price to pay really. Other than that didn’t really feel ‘with it’ until the weekend. But I think I got away very lightly and am hoping that all the rest will be the same. fingers crossed. Hope you keep well I will up date after my next one to let you know if it get worse but of course we are all different so probably wont help anyway.

Debsx

Hey Nel

If you’ve not had the nausea yet then you may very well be one of the lucky ones. I was exactly the same, no nausea for the first few days, and suddenly nothing happened… my arms did ache like hell the evening after treatment though.

Day 18 my hair started to fall out and I was much more tired for the whole of the 3 weeks.

Had second dose 10 days ago and it’s exactly the same. See how you feel as you stop taking the anti sickness pills. I expected to feel sick then but nothing at all.

Hi Nel

I have just had three FEC and one TAX. The FEC just made me really tired, constipated and bad taste in mouth (rusty nail taste). A week after dose I was fine.

I have TAX #2 next tuesday and found that just a tad worse than FEC…I had pains in body and legs etc and had to take painkillers.

NO nausea on both…but fingers crossed!!

Hair loss just before FEC #2 but I have a re-growth (fine and patchy, but it’s there!)

Good luck with your treatment

Anita

Morning all - well thanks for your comments. Still not felt anything other than very tired (I’m usually very good at sleeping, but I’m going above and beyond the usual!), so keeping my fingers crossed.

Sinead - isn’t 32 a great age! Just a shame we’ve experienced/are experienceing what we are. My husband and I don’t have any children and have had to go through IVF following on from my surgery to allow us to freeze some embryos. Luckily my tumour wasn’t hormone receptive so we got the chance to do it. We now have 3 little embryos happily frozen somewhere.

Not had any heartburn, constipation or funny taste - all of which I was prepared for, but shall wait and see what number 2 throws up on 21 July.

Went for my wig fititng yesterday and pick it up today - I love it! Even has a small bit of regrowth on the top so I look like I normally do!! Kind of makes the thought of my hair coming out not too bad, although was very restless in the night, worrying about it. Going to get it cut short as soon as I can and start wearing my wig in preparation. That’s my next big step - don’t think it’ll be much fun, but I’m sure we’ll get over it together (I have an exceptioally supportive husband and wonderful parents).

From what I understand, no TAX for me - just 6 lots of FEC.

Will keep you all up to date. Thanks for your help - you’ve given me some hope that I’m reasonably normal and not suddenly going to feel awful.

Nel x

Hi Nel,

I had FEC x 6 last year, dx January 07. Aged 28.

I had an absolutely awful time on it. Was sick as soon as I got home and was sick till doc came out at 2 am an injected me with anti sickness drug. Felt like I had been run over by a very big monster truck and slept for pretty much a week. This continued through all the chemos and it got to the point where I was being sick before i’d even left the chemo suite.
My mum had the same chemo and found that her problems started about 1 week after where as mine were pretty much immediate. I also suffered swollen ankles and feet, sore mouth and heart burn. Still get heart burn now and never suffered with it before chemo.

Everyones different and it does build up over the cycles. Hopefully you won’t be too bad on it. Just remember to take it easy even if you do feel well. Your body takes a battering when going through chemo. Remember to keep drinking loads of fluids to flush it all through and eat as and when you want to and what ever you want.

BIG HUGS

xxx

Hi Nel,
My hubby and I were fortunate enough to be able to have IVF too before my chemo so have a number of embryos in the deep freeze. We proudly show the photographs to anyone who shows the slightest bit of interest!! Isn’t it wonderful and a little strange too - sometimes we feel like ‘parents’ and other times actually becoming parents still seems a world away from where we are now. My hubby has been fantastic too - we’d only been married 5mths when we got my dx and only known each other 10mths before we got married so it could have been a bit of a test but he’s been great and I don’t know what I’d have done without him - I think the IVF was really good for him as it was something he could contribute to having felt rather helpless through the dx and surgery.
I’ve felt really well following my first FEC apart from mild queasyness the 1st couple of days, a couple of mouth ulcers and more tired than normal but I did have a 10 day period (which I’d expected after the IVF) so that might have contributed to the tiredness and the hair started to go on day 16 - there is hair all over the house but my scalp hasn’t felt too uncomfortable as some experience so not gone for the shaved look yet but plan to pick up my wig tomorrow. I have been thankful to have felt well but have wondered how the next 5 will go especially as many say that the effects seem to be cumulative - however, when I saw my oncologist this week he said that often the 1st is the worse because the body is experiencing the drugs for the 1st time. But it does seem the everyone is different and responds differently so some people have the same symptoms each time and others don’t. I’m just trying to stay relaxed and go with the flow but naturally I’m a planner and a bit of a worrier and I like to be in control so… going with the flow doesn’t come easily!!
All the best,
Angela xx

Hi Everyone

I’ve just had a FEC No 2 yesterday and thankfully I feel ok. After No 1 I was really sick so they changed my meds this time and it has obviously worked. I do feel a little tired and my taste buds aren’t right but apart from that nothing. I keep waiting on something bad happening. I have lost my hair. I got it shaved off on Monday as it was driving me crazy finding it all over the place as well as having an irrititated scalp. Feels much better now and I’m wearing lots of lovely scarves and bandanas. I have a wig but haven’t been brave enough to wear it yet.

Jackie B X

Hi Jackie B

I am due my 2nd FEC on Tuesday hope I feel the same as I did last time can’t complain wasn’t so bad. I have a wig too have shaved my hair to short crop but might have to shave it off completely as head sore haven’t have the courage to wear wig yet either love bandana and buffs etc…

Debs

Hiya all
After having good fec no. 2 fec 3 was a struggle this week but think Id maybe been doing too much. think it is cummulative but eveyrone is different. good luck with the IVF
xxx

Angela - you sound so like me it’s unbelievable! I agree - it’s been a testing time, especially with IVF and everything - we were planning to start a family (have been married 2 years in October but together for another 2.5 years on top of that) before dx. Went throught a range of emotions on IVF and although they only collected 4 eggs we’re pleased to at least have 3 that have made it to embryo’s. And yes, like you, sometimes feel like parents already! Don’t have any pics of them, but people keep asking if we’ve been to visit them!

I’m still feeling fine - had a small bit of heartburn and have been a bit more tired. And have also gone back to work this week - am lucky that I can work from home, so keeping myself away from germs and nastiness but still getting on at home which is great. Going to get hair cut tomorrow - going short but not shaved… one step at a time. I still love my wig and am actually quite looking forward to wearing it.

I too like to plan and find it hard to go with the flow, but just having to get up each day and see how it’s going and take it from there.

Jackie - I spent all last week waiting for something bad to happen… luckily it didn’t! We’ll see what the other 5 have in store.

Thanks again to everyone.
Nel x

Hi All,
I’ve been very tired for the last 2 days following my 2nd FEC on Friday but seem to be coming out of the mire now - I’ve managed to clean out the kitchen composter (I think the smell was contributing to the lingering nauseousness! - is that the right word!?) and sink but now having a rest - catching up on how everyone is getting on and enjoying a cup of coffee. Thankfully, I seem to have escaped other symptoms once again. I had head shaved on Saturday so now sporting the ‘Alien’ look and even those little bits are still coming out. I have been out in my wig, which is far more glamourous than my hair would ever look, but finding it hard to know how to react to people when they think it is my hair. Am I supposed to just say ‘thank u’ and feel v pleased but then I feel that I’m being deceitful and I’m sure I’ll be going out with scarves on at some point and then they’ll know anyway! It’s not really a big worry but it is just funny what this bc journey brings with it.
Nel - 3 sounds like a good number unless you were hoping for a bigger family - 5 aside?! but then as people keep reminding us, we might be able to become pregnant naturally anyway after all this. Although, I’m suspecting that I’ll be tempted to use the embryos as figure that they will be younger and won’t have been subjected to any of the chemo drugs - but mostly because I do feel attached to them which is possibly a bit silly but probably a fairly normal human reaction. Slighlty guilty admission - have you named yours? We have, well we would have if we could agree!
Sounds good to be able to work from home - I might be able to do some preparation and planning to help out others who are actually doing my work. I was able to get most things in place for the summer before I went off just after Easter but had thought I would be back mid-August to get ready for the next term but then found out I’d need the chemo & rads so not decided what to do about September yet but do need to give it some thought esp as my boss has just annouced that he’s leaving.
Take care, Angela

HI

Had FEC NO2 on Tuesday and felt really crap Tuesday night, had a bit of a grizzle because I couldn’t remember when I took my various pills, felt completely out of control! and I was actually sick this time but only the once so can’t complain too much. A bit fed up about it tho because my NO 3 is scheduled for the 29th and my son is coming home from Korea that day and I really wanted to meet him at the airport but can’t really take the chance. I just dossed around yesterday watch daytime tv and a film and felt better for it just feel a bit muzzy headed but thankfully no severe headaches this time.

Hope everyone else is doing ok

Debs x

Feeling sorry for myself this evening - OH has gone out to celebrate his birthday and I’ve decided to stay at home - don’t fancy pubs and bars and risk catching anything. He’d have stayed at home if I’d wanted but that’s the last thing I wanted really, but still can’t help feeling sorry for myself.

And have a small wobble about my hair - had it cut short earlier in the week (from just above shoulder length to about an inch all over). Thought I’d hate it short which meant I wouldn’t be too bothered when it came out, but instead my lovely hairdresser gave me a really funky style and I love it and everyone else does too, which just means I don’t want it to come out! Now on day 12 of my first FEC and keep waking up and checking to see if it’s coming out - expecting it to happen any day. Have spent this evening scratching (sounds lovely doesn’t it?) - not sure if that’s because it is itchy or just because I’m expecting something to happen. Trying to decide what to do next week - am going to go to work and fully expecting hair to start coming out. The last time they saw me I had longer hair - so, do I start wearing my wig so no one really notices (some people know and others don’t) or do I go in with it short with the possibility that by the end of the week I’ll be weariing a wig which will be much longer than it was at the beginning of the week? Dilema!!

Angela - No no - happy with 3 - just worried about whether they’ll survive defrosting etc! But, better than no chance at all. We’ve also had many discussions about whether or not to try naturally afterwards or just take our chance with the IVF. At the moment I think it’d be good to try naturally first because if we went straight for the IVF and it wasn’t successful then I reckon that’d be worse. But, then I agree with you about using the embryos as they’ve not been through the chemo etc. Who knows - in two years or more time we may have changed our minds again. Yep, we have named ours - they’re all called Eric - they were all called Zebedee whilst they were still zygotes but once they moved on and became embryos they all became Eric! Sad I know!

Debs - hope you’re doing ok after no 2?

Nel x

Hi Nel,
Not sad at all! Yesterday, hubby and I went to Ikea and bought photo frames as we’re going to start a family photo gallery along the wall up the stairs - in tribute to the fact that my parents have similar with my brother’s and my graduation photos. Now this probably is sad but I don’t care!
I’m sorry to hear you’ve been feeling down - I guess we all have those type of days but better days we’ll be on their way. How are you feeling now? I think I read on another thread that your hair had started to come out - boo hoo! What did you decide about wearing / not wearing wig to work? I had my hair cut into a bob and then got a wig a similar length but the wig is quite a different colour - still some people have thought that it was my own hair but then I’m never sure whether to just thank them for the compliments and recommend my hairdresser or put them straight. But then if I put them straight what is the point of wearing the wig?! Other than that it stops complete strangers staring. I just wore a scarf when we went to Ikea and was amazed at how many people moved out of my way, held doors open, etc - I felt like a real con because I was actually feeling so well, otherwise wouldn’t have contemplated attempting Ikea!

Debs - have you thought about asking if you could postpone FEC 3 for a few days? Hope you’re still feeling okay

Angela

Hi Angela

You made me laugh with your photo gallery!

Soon got over Friday night - think I’d just been worrying that OH wouldn’t get to celebrate his birthday perhaps as we’d like becuase of everything that’s going on. Luckily he went out with friends and had a good time and couldn’t remember much about it on Saturday, so it must’ve been good.

Decided not to wear wig on Monday - just thought I’d go for new shorter hair and then wear wig when it does come out. Slowly starting to come out now - am carrying a hat round with me in case it does suddenly come out! My wig is exactly the same as my hair before I had it cut - I decided I don’t care if people notice I’ve suddenly gone from short to long. I bet half them won’t actually notice… it’s just me being paranoid.

Nel x

hi Neleh

I had 6x FEC and I am 34 and was fit and healthy before this happened. I do think having youth and general good fitness may go in your favour, just listen to your body and do what it tells you, don’t push yourself.

Personally I was not physically sick during my FEC I just felt sick for the first few days and had acid reflux - taking the anti-sickness pills from the hospital plus Gaviscon provided some relief. Sadly I DID puke up the evening after my 6th and final FEC but that was me putting my fingers down my throat because the aforementioned were not working and I could not sleep - it was not uncontrollable. It was like when you’ve had too much drink and you’re sure you’re gonna chunder sooner or later so you decide to get rid of it. After each chemo I found myself feeling a bit sick and tired for the rest of the week then during week 2 i didn’t feel sick and I felt a bit less tired, week 3 I felt more or less normal then it all started again… but in that knowledge I was able to plan and organise myself so I could sit on my bum and do nothing during the first week without worrying about work/chores/social life etc.

Oh and I agree about the hair thing - initially I went from long hair to a funky bob and I kicked myself for not having had the guts to do sooner! I LOVED it! then when my hair began coming out I had it shaved to grade 7 with the full intention of wearing a wig from then on, but I looked FAB with a short crop and I went out with my new short hair until it thinned enough to warrant a grade zero, then I went with the wigs. I have 6 wigs and they are sometimes a bit hot and itchy but not as bad as I expected, and fun trying different styles out. Good idea to buy a scarf to sleep in as you lose heat through your head especially at night. Fingers crossed you may have got away with not losing your hair, but IF you lose it, believe me it is not as bad as you would think and it’s one less thing to have to worry about when you feel a bit rough.

Finally - whilst you have to take care re infections, you don’t need to stay home in a bubble, if you feel like going to the pub you’re unlikely to catch the lergy any more than if you go to work or the corner shop. I caught a cold off BF (because of kissing LOL) just before my 6th FEC and it took 2 weeks to go, but I love him so I haven’t told him off. Just don’t kiss any strangers and you should be OK.

I hope it goes OK for you xx