Horrid Side Effects from Fec-t :-(

[melykins]

I decided not to go with chemo. Results prior to this option were very good , only my age of 49 (50) this October was talked about

I believe chemo for people who have very bad cancer but I am in a grey area according to the doctors. That it is only extra little insurance . My stats were 94% survival and 89% never coming back .. My lymph nodes and margins all clear and cancer in situ. .. I am not putting my body through all that for a poss 2% extra insurance

according to my doctors, chemo or no chemo you can still get cancer back , may go into remission but never cured

thanks an anyway for giving your views on the subject

[kay73]

Hi Melykins
Im with the other two lovely ladies on this one!
Everyone is different with side effects, chemo wasnt pleasant with sickness and other side effects for me but other ladies i spoke to while having treatment breezed through .
Time does fly by, i set countdowns for each stage and rewarded myself for each bit, even if it was eating something nice that i fancied or going out for a walk somewhere nice 🙂
The hair is everyones concern at the begining, dont stress about it mine was down to my bum before chemo i cut it short before it fell out, some other ladies hair just thinned. But it fell out in november 2013 and started growing again after chemo number 4, feb 2014, just sprouts to start but it was hair, today its an elvin type style thicker than before and darker but its a lovely head of hair ! Look at a positive winter is good for chemo if you get hot sweats and you get to wear scarves and lovely hats through winter, made me feel less odd 🙂
For the short space of time you are on chemo it was worth it in the grand scheme of things for me, they gave it to me to shrink my lump and for me it worked it went from 4cm to 1cm which meant my op took a lot less tissue !
I finished all my treatments a week ago and ive kicked its butt 🙂 it is scary before you start but we are all strong ladies and im sure you are too, good luck with what ever you chose to do x it was worth it for me to shrink that little sucker and remove it so that it never comes back x

[skinnyminx]

Well said Maryland.

Personally I avoided the internet, forums and support groups until I was well out the other side of 'active' treatment.  Didn't want to compare notes and be potentially frightened f*rtless by other people's experiences.

Melykins - everyone has a choice about whether to proceed with any medical treatment, however strongly it may be recommended by healthcare professionals.  You have to consent to treatment.  But please don't be swayed by reports of the severity of other people's side-effects.  It could be different for you.  Generally people who don't have bad side-effects from surgery, chemo, radiotherapy, endocrine therapy etc. won't be posting on forums about this fact.  Best wishes, whatever you decide.

[Maryland]

Hi Melykins......the forum is a place where people come to for support and to share their experiences, worries, fears and good news. By its very nature, a bit like giving praise or complaining about a service, there will be a mix of both positive and negative! I finished FEC-T in July 2012 and worked throughout as a school business manager; just staying at home on the low white blood cell count days when my Onc forbade me to work. Yes, it was challenging; yes the side effects were sometimes unpleasant, but there was always a lotion or potion to help! I found keeping a comprehensive diary helpful and tried my best to 'live in the moment'. if you decide 'yes' to chemo, you will cope however you want to manage it. I didn't have a choice about chemo, although it was a close call. Not everyone has the side effects, you may get none/some/all....no-one can predict. The only 'given' is hair loss. I took the view that it was 4 months of 'pain' for (fingers crossed) a lifetime of 'gain'. To be honest, I do have some lingering side effects but mostly the whole experience is a dim and distant memory and I have moved on with my life with lots to look forward to. I realise that not everyone has the same experience or mindset as me; however I just hope a different viewpoint would be helpful. All the very best with whatever you decide to do....take care x

[melykins]

Oh my god l have decide whether to take chemo and these comments put me off chemo. So frightening

[Serenity58]

Hi Fiona ~ mine didn't bleed, was just sore with the stitches in the neck. Hope you ok x

[Fiona00]

Hi serenity, my gronsheng line been bleeding a little since it was in and now it is day 4,is it normal? How about yours? when the bleeding will be settled?

[Serenity58]

Fiona, it was the gcsf injections that have given me pain. I was given iv penicillin as a precaution for a few days. Yes the line did come with some discomfort once the numbness had worn off and the collar bone area sore. I just had my stitches out on monday and today it has improved xx

[Fiona00]

Serenity, so what made u feel pain and caused the infection ? i had the line in yesterday! It was a very unpleasant experience, I can feel the whole procedure and pain. And today my neck and shoulder feel like being knocked by a truck. And the stitches around the collar bone is quite sore and feel pulling when I move my head... How long does the pain on the collar bone last? and I will have my third round tomorrow, feel lucky that I wasn't offered same day chemo with line in.

[Serenity58]

Fiona00, I dont think the line caused a problem. I do hope today went well for you 🙂 xx

[NimB]

Sodastream, Thanks for the words of encouragement..Yes my last FEC was yesterday.Half way through.Yay.Not sure about the T part..Not going to worry..Will know when it happens.Going to lie down now....X

[Fiona00]

Serenity , sorry that u had a tough time. Was the grosheng line causing the problem? I am gong to have one tomorrow, not sure if that's the right choice for me or not

[Serenity58]

Hi all, and thank you for your responses  and sorry for those having a difficult time of it.

 I ended up in hospital on the wednesday afternoon with neutropenic sepsis, too weak to travel by taxi the hospital sent an ambulance! My count was 0.5 despite being on the gcsf .  They got my pain under control and my count also went up to 1.5, but the fec will be tweaked next time round on the 16th!

Just home this afternoon ~ taking it very very easy .

[Sodastream]

NimB sorry to hear its knocking you out so long but as long as you rest and listen to your body you'll get through it. Good luck with you FEC today, is this your last before the T part? If so look on the bright side you're half way there and the T part doesn't make you feel as sick. X

[NimB]

Hi all...I am new this forum so bear with me...It is so refreshing to read all your posts and realise that I am not on my own.I am going for my 3rd session of Fec t tomorrow so am not feeling very optimistic today. The first session was awful.Sick for 5 days and then just felt out of it for the next week. I saw my oncologist and they upped the anti sickness meds for the 2nd session. I had no sickness which was great but I was still very out of it for about 10 days. I always say to friends and family that I'll be back in 2 weeks as it's week 3 when I start to feel like myself. I'm hoping it will be a little better this time as my body will be more used to it. Fingers crossed.

[Sodastream]

Tomsop. Sorry you've had such a rough first FEC. Hopefully the adjusted sickness meds will help. Have they given you Emend as this is great but expensive so that's why they don't offer it to everyone. As I said in my last post every cycle has been different but all better than the first and I've not ended up in hospital since my first cycle. Take plenty of rest when you need it and fingers crossed things get a lot better for you. X

[tomsop]

I was really sick after my first FEC and ended up in hospital due to dehydration. The following week I got an infection and had an overnight spell in hospital and ten days of antibiotics. Spoke to my consultant who has changed my anti sickness meds for my next course of FEC. I am really hoping it gets better. I have had a sore mouth, felt nauseous, a sore throat and lost my hair. A great three weeks. 

[whitepops]

Have they given you emend?

[Sodastream]

Hi,sorry that you've had a tough first chemo. I'm having my 6th out of 8 tomorrow. The one thing I've learnt is to take each cycle as it comes as mine have all been different.
My first FEC saw me land up in hospital on antibiotics for 5 days with a fever and awful headache plus felt like passing out every time I stood up. My second made me feel really sick and tired two hours after treatment but next day woke up feeling fine and had good energy and very few side effects. On my 3rd FEC they gave me Emend for the sickness and I didn't feel sick but had no energy for 10 days. My 4th FEC was a repeat of cycle 2 and despite having Emend threw up all night and had no energy for 6 days. Throughout FEC I suffered with my veins until I got the hang of asking them to flush a large bag of saline through which helped, I also had mouth ulcers.
My 5th chemo was doxetaxol and the side effects were different, I had good energy, no sickness or mouth ulcers but very dry mouth with no taste and bone pain plus complete lack of sence of humour. Despite all this it hasn't been to tough and I've learnt to take it easy in the first week and plan lots of lovely things to look forward to in the 3rd week. I've also managed to hang onto my hair by using coldcap.
Just take one day at a time, expect the worst but hope for the best and before you know it you'll be half way. Good luck. X

[kay73]

I agree with Samantha on the temperature front !!! I wasn't so bad with nuetrophils until I got to the taxotere ! The hospital gave me little temperature strips but we went and bought a little digital thermometer for accuracy as I thought I was just being paranoid, I had two over night stops and a week in hospital with neutropenic scepsis ! Is vital to keep on top of temperature as I avoided nasty infections by checking and getting help straight away ! All three times late at night before bed !
Again the nurses will help you just have to ask even if it means calling the emergency numbers they give you in the middle of the night, they told me not to wait till morning as it can be dangerous with letting infection take hold !
Good luck to all of you from someone who has been through it recently, lots of positive thoughts
Kay xxx

[SamanthaL]

FEC is grim for me too. I think it's a shock mostly, especially if you've been a busy person before. Keep calling your nurses, and they should really give you relief through medication. The steroids really helped for me. I am on my second, and to be honest the first was the worst- which leads me to believe that some of it is shock.
Barrocca, spirulina and aloe Vera but sometimes I just feel bad, and go to bed.
What's your temperature like? It's very important to keep an eye on that as you know - I had v low neutrophils levels on my first chemo which I managed to control with injections for the second.

[kay73]

Hi serenity
The first one is a shock to the body !
I had my chemo between oct and feb if this year the first three made me really sick !
But don't suffer in silence call your chemo nurses, they can really help with the sickness and what drugs they give you ! I had three lots of anti sickness pills and there was more on offer if I needed ! I found that I took the domperidone as a preventative, nurses said I could overlap it with what they gave me in hospital because it works in a different way !
The receptors in the brain are saying I'm dizzy and I want to be sick and there are drugs that can help ! Again ask your nurses I'm sure they ll help x
I had a very good diet through my chemo, took multi vitamins, drank lots of water, made smoothies and veg juices depending on whether my body could take them !
That's what helped me, you can't stop side effects but between diet and the hospital helping it can ease them a bit !
I've had two operations since my chemo and nearly through my radiotherapy now 🙂 it's a slog its not easy and it really is a test of your strength, but have a countdown of some kind it helps, by treatment or weeks or months, it helps x
Hope this helps a little, good luck
Kay x

[flower75]

Hi I,m sorry you,re feeling so rubbish. I was also on fec-t and can honestly say the side effects after the first treatment were by far the worst, I thought I,d never get through it. But fortunately it did get slightly better each time and I actually coped better with the 't' part. Good luck with the rest of your treatment xx

[Serenity58]

I had round one of fec-t on thursday afternoon, within a few hours I was very dizzy and vomitting, which fortunately subsided, but the next four days feeling  nausea and flu like pains in shoulders, groin and legs.  Monday mild vertigo kicked in but by the afternoon even laying on the sofa was making me giddy.  Today the nurse got me some emergency supplies of Prochlorprozine and some five hours later feeling an improvement.  Along with sore dry mouth, horrid taste and smell, feeling wiped out with no energy and chemo brain.  Im told this could be the pattern for me on subsequent treatments, which is very worrying as I really didn't want to be this debilitated 😞