Holding hands - 1st FEC chemo 6th jan

[Guest user]

hey - I think the SE are predictable and you can learn (quickly !) what you need to do to manage them - like others the constipation needs managed throughout or ouch !

good luck let us know how youget on xx

[Guest user]

Hi Finty,

I had my third FEC on thursday and my SE's have followed the same pattern each time so far, if anything the first cycle was the worst maybe because I didn't know what to expect and didn't take anything for the constipation I got from the anti-nausea meds.

I'm also using the cold cap and my hair has thinned but not enough to require me to cover my head. It started to thin around the time of my second FEC and I'm still losing hair but very gradually. My underarm hair all came out overnight at around day 18 after 1st FEC but is now showing signs of growing back a little!

Good luck for Tuesday, let us know how you get on.

Linda
xx

[finty]

Hi everyone - this is my first post. I'm having my second FEC on Tuesday, and wanted to ask those further down the route whether their SE's followed the same pattern each cycle.

Also, cut my hair really short and had the cold cap - have still to lose any hair. Have I got lucky or is it too early to tell if it will fall out?

Thanks for your help.

[Guest user]

Hi - to all. Have to say that beyond a little ongoing nausea and a funny taste in my mouth all seems ok after a horrible start. Can live with 24 hours if that's how it turns out each time. So hope for those yet to start!

Good luck to all about to start/have started. Final major trauma will be the hair going. Have an appointment for final wig try-on today and am hoping desparately that it looks ok. CN said would lose hair within 7-10 days on FEC so have to next weekend to make sure all is ok. Don't look good in hats so pinning all my hopes on the wig!

[Guest user]

Pearlysocks - hope your first EPI went ok - drink loads of water and if you feel sick make sure you take your meds and if they don't work get more from the GP or the hospital. I ended up with domperidone, ondanestron and nonzinam (this later makes you sleep though) just to get through the first week.

the main SE for me is sickness, constipation, insomnia and thrust all of which can be managed.

the first time is rough but you will feel better soon

Wendy I have almost exactly the same as you WLE to remove a 18mm grade 3 tumour - got chemo then rads then herceptin to do and half way through chemo now - we can chum each other !!

Hope everyone is doing ok in this cold weather - my circulation is shot at the moment so I'm here in my thermals - Bringing Sexy Back ! LOL

[Guest user]

Hi to all

I had a WLE on Nov 13Th, Grade 3 19mm tumour no spread to nodes.
I was first told my treatment would be hormone and radiotherapy I was then advised to have chemo which was a shock as I had just got my head a little way around what was happening.they recommended chemo as a Grade 3 and age 43.my BC was picked up in right breast on mammogram but I had originally gone with a lump in the left that turned out OK.

HI Wendy
I had my first chemo EPI on 29Th DEC and to be honest apart from feeling queasy and tired for first week it was OK my advice as given to me before hand is to drink plenty of fluids and when i felt sickly I would lay down until it passed eating little and often also helped even though i didn't really feel like eating.Grated Ginger and warm water when queasy.
The only real problem was constipation and i ended up having an enema
{Sorry if to much info} It was either that or DYNO ROD I am now taking movicol and they are working a treat.

Just keep coming to the forum this site has helped me so much since i was diagnosed in October.

Good luck to everyone on first or next chemo.

Take care and keep warm

Wendy xx

[scottishlass]

Hello llinnw, sorry you have had to join us on this forum, but welcome anyway. I have had BC for many years and have found lots of support from this site. It wasn't around when I was first diagnosed and it is great to be able to come on here whether it is to ask questions, have a moan or share our experiences with women in a similar position. You will soon get the hang of it all although I did find it quite confusing at first. So if we can help just ask. Someone will be able to answer you....even in the middle of the night if you cannot get back to sleep! Take care, love Val

[Guest user]

Hello llinnw
I'm sorry you find yourself in a position to join this forum. There is a great thread full of chemotherapy tips which I found helpful to read through, just to get my head around it all, but the best advice, on top of that was to 'roll with it' and be guided by how you feel.
I've just finished 6x FEC and I found the support from chemo nurses to be priceless. There is no side effect they can't help you with and their aim is to make it all as SE free as possible.
I'm not surprised you are scared - its scary stuff thats happening to us. I wouldn't worry about keeping up the positive outlook, how you feel from day to day is completely valid, and to be honest, people around you need to know how you feel.
I also trained as RMN yonks ago, but have worked in social care and management since. I'm used to being the one people come to for support and my diagnoses first in 1997 and this one last June have both knocked me for 6. I see a psychologist now, via my bc nurse - wish I had gone this route first time around!
I hope things go well with you - remember, this is about you and its OK to put yourself first
take care and be kind to yourself
love monica x

[Guest user]

Hi Folks,
I am new to this site, and I am also very apprehensive about starting by first cycle of FEC on 12th Jan. Any advice would be greatly appreciated. I was diagnosed 1st December, 2009, admitted for wide local incision with spread in to four lymph nodes, Grade 3 tumour.

Im feeling scared, 42 years old and completely crumbled when diagnosed. Funny, but im a mental health nurse and I nurse people daily to utilise distraction techniques and I am a quivering wreck. Since diagnosis, I have been positive and optimistic but sometimes this is hard to maintain. Any advice from you girls who are going through the lived experience would be a great help.
llinnw xxx

[Guest user]

First FEC yesterday, and had horrendous nausea and sickness for 5 hours. Chemo nurses wonderful and came to my house to inject me as I couldn't keep anything down.

11pm last night had decided I wasn't doing anymore of this!! But all looks better today. Just slightly queasy and feeling better by the minute. Can cope with 24 hours if this is what happens every time. Onc has said he will change the meds before next session, so fingers crossed.

[Guest user]

Hi there. I am new to the site and this is my first ever post. I have my first EPI chemo on the 19th and i am really scared.I had a grade 3 aggressive lump in my right breast and had 2 WLE in December to remove it. Was originally just going down the radiotherapy route until just before Christmas they recommended chemo first. Well that certainly came out of the blue !! So i start week after next - hickman line in on the Monday and then Tuesday is kick off.

I have been reading various posts and they have all made me feel so much better, even the ones describing SE's ( i think that is my main fear - not knowing anything and fearing the worst ) so took the courage to post something as the new girl on the block whilst at the same time thanking you all for your honesty and humour. I will certainly try to focus in on this in the coming months.

Going to try the cold cap and see how i get on - getting my hair cut short next week ( i have shoulder length hair ) so if it does fall out i will be half way there.

Any top tips before chemo starts - for the first few days - i don't want to think too far ahead. Any experiences of EPI?

LOL
Wendy

[Guest user]

Hi, glad things went well today. Try and rest if you can, although not easy with children i'm sure.

Drink plenty of fluids, especially if you have the sinusy headaches. I always got them with FEC.

I was told to ask the nurses to administer the cyclophosphamide slower after really bad headache after first dose, so I did and found this helped.

Take care. Love and hugs, Debbie. xx

[Guest user]

Well done Lilythepink
it's great isn't it to get one down, and now you know what you're getting every cycle. Hope it continues to go well with you
be good to yourself
monica x

[Guest user]

Well done Lilythepink, now you can start counting down 'til you're finished! I had FEC no3 this morning, just one more to go then I start weekly Taxol.

I've been lucky and not had any bad side effects, feel a bit rough for a couple of days then tired for a few more after the steroids finish, the last two weeks of each cycle I've felt fine so far let's hope it's the same this time.

The best tips I've had for minimising SE's have been to drink lots to flush the toxins through, eat regularly (I find I feel more nauseous if I don't have a regular snack/chocolate intake!) and if you get the nasty post-chemo taste in your mouth then fruit pastilles still taste ok and are refreshing.

Linda
xx

[Guest user]

Hi all

just thought id add my support to all you ladies just starting on the road of chemo. I had a mastectomy,3xfex 3xtax, 15 rads tamoxifen and just about to start herceptin.

It is very frightening when you hear that word chemo but it is do-able, im a single mum of 2 boys and found that having them around helped but they are 11 and 14 so they understood what was going on. For every side effect you might get the hospital or your GP will have something to help you, apart from the taste buds unfortunatly.My unit was fab and they were happy to answer any questions i had or advice on se. you dont have to suffer. Listen to your body and if you feel tired rest.

I found this site so helpful chatting to other ladies going through the same thing or from those who come through the other side, you can moan as much as you like and they dont mind, share your funny stories and give you support.

Well done Lilythepink.1 down !

take care Sally xx

[Guest user]

Well done Lilythepink - glad to hear your first session is out of the way - hope the SEs are not too bad.
I also start chemo January 14th, I've got off fairly light compared to many of you - 4 x EC. Even so, difficult to know what to expect - I have found previous comments and advice here so encouraging so I am hoping for the best, but prepared for the worst.
Been out for a long walk in the snow and sunshine this afternoon - better conditions here than in the alps!

[Guest user]

I did it! first session out of the way, was very proud of myself, there was a foot of snow, roads bad, appoin at 9.00, managed to get there, but as school/nursery closed hubby stayed at home, and went in on my own.
Was'nt as bad as i expected, but have bad veins so 3 attempts to get line in. Red stuff was worse, but all in all OK.
My approach is its like alcohol it is poison, but we still take it.
The red stuff i call Aftershock (pretty toxic), the second lot was like couple of vodkas, and finished off with a bottle of wine, and a hangover to look forward to. Said to the nurse as i left, be in for another acohol fuelled session in a couple of weeks.

I have had a raging headache since my session and only been slightly sick, temp slightly raised, so probably had a cold before hand.

There has been no let up at home as the kids are off school/nursery but is as sort of helped, you just have to get on with it.
Feeling Brave at mo yippee

[Guest user]

Hello to all the 'newbies' here,
Lilythepink, hope your chemo has gone OK, the anticipation, I found, was much worse than the reality. Whitey hope same goes for you too, and that things go well today.
I have just (yesterday) had my 6th FEC and like others have said, I found it all do-able.
Mainly I just wanted to wish you all the best and hope that things go well for all of you. The best advice I got was to 'roll with it' and be kind to myself, and the support I got from the staff at the chemo unit was just superb - they are a big help.
Debbs, I got a wig and took it to my hairdresser who thinned it out and cut it to suit my face etc and it looked great, but to be honest I've hardly bothered with it - I bought a velvet baker boy cap that I wear everywhere and I go au natural in the house except when its cold! Also my hair started coming back after chemo 4, so I realise I've been very lucky in that way.
Hope things go well for all of you
monica x

[Guest user]

Hello
Iam new to this site this is only my second post, I start my first chemo tomorrow and iam terrified!!! I had a grade 3 aggresive lump in my right breast (very small), had a lumpectomy a few weeks back and it had not spread into my lymp nodes but they said because of very bad family history (my mum, aunties and cousins) that i would need to have six lots of FEC's, ive been told that they will be giving me steriods as well. Going to have a double masectomy after the chemo has finised.

I have been reading post on this site all day today and I must say it has made me feel a lot better, you girls out ther are so strong a great inspiration to newbies like me.

I had thought of having the cold cap, but have since been told that its not always worth the pain. I have been out and brought a wig but it feels so strange.....

Any tips you have that might help me get thru tomorrow would be a great help.

Iam in the Guildford/Woking area would love to pal up with others in this area......

Many thanks
Sappy

[debbs38]

Hiya,
Yes i went for a wig fitting and they just look ridiculous. I know theres much worse things but could just do with out it. My hair is really fine and quite long so the wigs look like ive got 3 times as much hair & it feels ridiculous, wondering whether to cut it short coz it will be easier but cant bring myself to. Sure mine will grow back grey and curly! Wot a mare about your prescription when youve psyched yourself up for it.Wot a nightmare. Are you snowed in? we are stuck here.
keep in touch x

[Guest user]

Hi Lillythepink and Debbs

I was supposed to be starting FEC 6th jan but unfortunately oncologist had not written up prescription so will now be starting on the 13th jan at kettering general.Like you im still a bit nervous about what is ahead but know it has to be done.Find the hair loss side more upsetting than i thought i would(though still making jokes about it in front of family and friends)yes i know its daft cose it will grow back...grey no doubt. hope yous 1st FEC wasnt too bad and hope the SE are mild, take care we can compare notes soon,donna x

[Guest user]

HI Lilly the pink.
How was your first FEC session? I have just been to oncologist today, he wants me to start FEC in feb, I am terrified just as you are and many others. Hope you did not have to go alone, especially to the first one, I know I will need a hand to hold if I decide to have it.. where are you being treated? I am at Norwich, they seem very helpful and friendly..Please let us know how you got on today. Thinking of you.. Tracey..x

[Guest user]

Hi Lily

I start FEC tomorrow 7th Jan, so will be close to you all the way. Very nervous like you, but hoping I get off lightly with the SEs. Have an 11 year daughter who's life I'm trying to keep as normal as poss. OH very supportive though and lots of help with things.

Fingers crossed for you today!

[Guest user]

Hi Lily,
Good luck for today...the first treatment is always the worst. After today to will know where you are going. The fear of the unknow is terrifying!!
I started FEC after a WLE in October, I have now done 4 with just 2more to go!! As much as I hate to say it time has flown by.

I have 3 children, luckily the youngest started school in Sept. Which has been a godsend really. I also haven't suffered to bad so far, with just a few hungover days after chemo session. Make sure you take life easy on these days.... and if the children eat pizza and watch more TV than usual don't worry... it's only for a shoet period of time, then you can get back on track!
I had my last FEC 2 days before Christmas and still managed a 5.30 start Christmas morning with the boys!! Still had a houseful all through Christmas and New year and coped as well as normal. Infact I think normality is great...keeps thinks going and the kids are great for that, we don't all want huge amounts of sympathy and kid don't tend to do that(well, not mine anyway!) I even managed all the Christmas shopping and was more organised than I have ever been!!
I'm not trying to paint a pretty picture of it all here, just letting you know that you WILL find a way of coping or adapting for a while!! I often find myself cleaning the toilet and thinking 'I can't believe that I've got The C word and I still have to clean the loo!!! Basically not much changes!!
Let us know where you live and your hospital, I'm Leic/Derbyshire border and having treatment at Spire in Leicester which is an hr away from my house!!
Take care and keep posting.. this website is invaluable..I have found loads of good advice from wonderful strong ladies that I would never have known otherwise!
Sarah xx

[Flora29]

Hi Lily
I'm another one who hasn't had many side effects to speak of (and have had 4 x FEC so far). I have also carried on working throughout, except the odd day off here and there (and a lot of that was using up holiday before my annual leave year finished!) and attending hospital appointments.

I don't have children, but I think I could have coped with them if I had...

We do all react differently to it, and sadly some people do suffer, but there is a chance that you will be one of those who don't have a bad reaction. I was sat waiting for the side effects to hit after NO 1... and I kept waiting and waiting!

I'm sorry to hear your partner is struggling to deal with this, as it must be so hard to feel you can't talk about it. Come here and chat to us, and hopefully you have other friends/family you can share things with. It does help to talk about it, as it will be in your mind all the time.

My OH came with me to my first chemo and was chucked out cos there wasn't enough space! I have gone on my own every time since, which has been fine. I've been OK to drive afterwards.
Wishing you lots and lots of luck.
Flora xxx

[Guest user]

Hi Lilythepink & Debbs38

Had my 1st FEC on the 17th December - due 2nd one on the 7th January and I never thought I would say this about chemo but...... bring it on, do not want any delays.

After 1st one, I felt queasy, heady (bit like having flu and morning sickness at the same time) for about 5 days, had a bit of a sore mouth (that went), taste change (also temporary), breathlessness on exertion (that settled also) and after 10 days was back to my normal self apart from tingly head and the start of shedding hair all over the place!!:). Once this was shaved to a number 2 the sore 'ponytail' head thing went and all is well again.

Good luck, don't make any expectations as to how you will feel, let it happen as it happens and drink, drink, drink, rest when you need to and nibble what your body tells you too....And take those anti emetics, it is all do-able:)

Will be thinking of you - Big Hug Leigh xxx

[debbs38]

Hi there,
Im also starting FEC next week on tues 12th so would be good to link up. Im thinking of you and hope it wont be too bad. It seems everyone has different experience. I just want to get on with it now although Im also dreading it aswell and everything else that goes on with treatment- rads/ tamoxifen etc etc. Let us know how it goes
x

[Guest user]

HI Lillythe pink - It is very scarry -

I have IBC (Inflamatory type breast cancer) I have just finished 6 x fec and they wanted to stop at 4 x fec but I took 2nd and 3rd opinion and asked them to continue for the full 6 - Its easier than child birth and side effects can be similar depeding on the child with tiredness and sleepness nights - I accepted friends help and continued to run my business after taking around 4 to 5 days after each to rest when I could - not give up - I still managed OK just had problems with the brain working (chemo brain they say) people feel better when they are helping as they dont know what else to do for you. Keep taking the anti sickness as it works best when you are not feeling sick - I also got those wrist bands for sea sickness which helped too - I asked for laxatives when I needed to and they were good as well as gum wash as FEC gave me ulcers in my mouth for the first twice only - and the stuff you get from your nurse is better again than you can get from a chemist so keep asking for the good stuff... rather than buying it.

You may find that you are better off with the children being busy in the day and find you may sleep better than I did as due to resting in day I had terrible side effects for sleep - then had to take sleeping tablets and they gave side effects of there own -

I did not realise until nearing the end of the FEC that if I continued in the 4 to 5 days to take some freash air and light excercise the brain would have got the oxygen it needed and worked better and recover quicker. I found if I was a little dusty in the head a few mo's in the garden helped - but dont catch a cold

I have the support of a wonderful guy but I was diagnosed just 10 days before I got married - no one likes the C word its difficult to know how to react - I susprect your guy is just as wonderful and is as scared he wont cope with his lovely lady going through this.

I must say the FEC is powerful but worked well so far for me I am awaiting surgery Jan 27th the mass (no lumps) has decreased from 3 cm to just 2 mm on FEC alone - so have faith that the medicine is better than the desease and a necessary part of keeping you alive and well again.

This site will give you lots of support and as others say - your nurse will be brilliant and ensure you hav lots of info - if not ask..

We are all different in the side effect and I truly hope you get none of the above - but I am sure too there is nothing that you could not cope with and you get to know what days you are going to be unwell too.. So it can be planned for to some degree..

Best of Luck my thoughrts are with you Dee Dee (in memory soon of the lovely Double Dee's I had) ...

[scottishlass]

Hi lilythepink, I am sorry that you are having a difficult time just now and do not have much support. Chemo varies diffently depending on what chemo you are on and for how long. There are side effects (SE's) but you need not get all of them. I would just recommend taking any tablets they offer for side effects, like anti-nausea tablets or tablets to help with loose stools. But it will be difficult if you have young children to care for too. Perhaps your husband will try to help out when you actually start your chemo. (I know my husband was a great support and I would not have managed without his help). Just try to rest whenever you can. I do not know how old your children are, but if anyone offers to help out, please accept their offer. Let us know how you get on. Where about in the country do you live? Because there is bound to be someone on this site who attends the same hospital as you do. Good luck. ( I have just finished a course of chemo myself). Love Val

[Guest user]

thankyou for your comments, don't know what SE's are? I feel i can deal with the side affects, to me it is similiar to being pregnant(not pleasant, sick sick sick), it is just coping with the kids, we have no family help, so have to rely on good friends. I may have my husband with me tomorrow it just depends on childcare.....
But i am fine going on my own if i have to.

[Guest user]

ive just done 2 fec, will be having my third next week if my bloods are ok.

my bc was always called Larry the Lodger, as lodgers dont stay in a house for long!

thinking of you for tomorrow. I found the actual fec treatment not as bad as i thought. Had a lovely chat to the chemo nurse as they were doing my meds.
eva

[Guest user]

Hi lilythepink,
I've just finished 6 x FEC and apart from the first one the se's haven't Been that bad. Accept help, be kind to yourself and rest up. Also take all the anti sickness they offer even if you feel
ok. It's much easier yo control sickness if you take the tablets before you feel sick. I also found gargling salted water at bed time good for keeping germs at bay. You will feel good again after the first week so remember it's not for ever. We're all hear to support you so let us know how you get on.

Al x

[Guest user]

Hi Lilythepink ,just finished my chemo ,but thought i would say hi anyway ,My daughter didnt like the c word so we called it "freda",sometimes the fear is worse than what actualy happens,they have to tell; you all the side effects ,but you dont have to get them .Try and focus on it zapping away at freda ,thats what i did ,good luck i`ll be thinking of you luv barb xxxxps am rubbish on a pc as well

[marli]

Hi lilythepink - know how you feel about needing friends going through the same thing. I have found two topic threads useful -Ist chemo 17th December - doing okay so far which is v.positive and Top tips to help you through chemotherapy which has lots of useful advice. If you scroll through Latests posts you should be able to find them.
Fear of the unknown is worse than the actual treatment and also remember to think POSITIVE.Chemo affects everyone differently and I have been so lucky with only minimal SE's, all helped by information gleaned from this site. All the staff at my hospital have been so good so remember to ask yours about any concerns no matter how small they may seem. Good luck and stay calm ad positve. Look forward to hearing from you soon. Marli

[Guest user]

Hi there, I hope that you are ok and not dreading chemo too much. I have a husband who also likes to avoid the subject of my cancer as much as possible. If I ask him to come to appointments and things with me then he does, but I can tell he would rather not be there, so my sister now comes to most things with me.

Do you have any friends or family who will come to the chemo suite with you? I have had lots of offers but think I may wait and call in their services for lifts to radio etc.

I have had 3 FEC and I can honestly say that apart from one where my bloods were very low, they have been extremely manageable. Even my "bad" one wasn't that horrendous. It knocked me off my fet for a few days, and I didn't get on with the anti sickness pills, but by day 10 I felt like a new woman.

I went into the whole thing with an attitude that I should expect the worst of all the side effects and if they are better then that is a bonus! Luckily they have been ok.

Don't be afraid to ask for any medication you feel you may need and if something doesn't suit you ask for an alternative to try. No one wants you to suffer if you don't have to.

I will give you all the support I can virtually. Hope it all goes ok for you. Please keep me posted.

Love and hugs, Debbie. xx

[Guest user]

Anyone starting there chemo soon, would appreciate a friend who is going through it at the same time. My husband does not like the C word, and i am very scared of not being able to look after my children if i am unwell, i have closed my business ( a shop) as i cannot do kids,chemo and business, sounds drastic, i dont know.

Anyway i am rubbish at this online stuff.