Can anyone help

Can anyone help

Can anyone help Hi everyone. My name is Paula and I was diagnosed on the 3rd May this year. I have had surgery and I go for my first chemo appointment next Wednesday. Can anyone tell me what the treatment is like. I have to have 6 sessions of FEC the 4 weeks of radio therapy…
I also have to take Tamoxifen which is worrying me too. Can anyone tell me what the symptons of that is like aswell.

Hope everyone is well and I await some replies.

Thanks
Paula x

hi Paula,

Sorry to hear you have had to join this site, but you will find really helpful and supportive. Like you i am having 6 FEC (they should change the E to a U!) and 4 weeks of radiotherapy. I have had two FEC, my third is on the 26th may.
The first one was not as bad as i thought, but within a few hours felt nauseous, nothing too bad, the following few days i was at home and in and out of bed, ths side effects i had was metal tast in mouth, which went away after a few days, sore throat.
the second one i have to say was really not too bad either, again felt nauseous and stayed at home in bed, just pottering.
i think you just have to listen to your body, rest when you want, eat litte and often as i found i lost my appetite but after a feww days got back again. my hair has nearly all gone. i did wear the cool cap but did not work to well for me. it’s very cold.
i not having tamoxifen so can’t help ypu there. i wish you all the best with your treatment. Stay strong and focus on the end. you will have down days, let yourself have them. if you have people around let them help you too.

let us know how you get on

love Nadia x

Thankyou for such a quick reply. Glad to hear your symptons are not too bad. A little shocked at how quick the loss of hair happens, but hey thats nothing is it, it grows back. How long is the stay in hospital for the treatment??? I haven’t got any idea really, I know it varies depending on the hospital. I have to admit I am really worried about the chemo. I think its the not knowing what to expect. Anyway keep your chin up you are 2 steps ahead of me. Good luck with the rest of the treatment.
Take care
Love Paula

hi Paula, i popped back in again. i love this site.
yeah my hair loss happeed quickly, i was absolutely dreading this but its not as bad as i thought. i have a fantastic wig, whci is a NHS one, you should be etitled to one. you still have to pay about £50 but is cheaper than from shops. ask your hospital. I know the anxiousness of not knowing what to expect is horrible. i still feel anxious every time i go. ask the nurses and doctors as many questions as you can, i keep a note book in my bag so if i think of anyting i write it efore i forget.
i go in as a day patient for chemo, i am there for a few hours while i have blood count check, a chat with onc, then they send me away for an hour of so then i get called back for the chemo. its given through a IV drip, usually your arm. i hate needles but its bearable. i have found that i can see a pattern with the side effects so kind of know what to expect. i have found that on ‘good weeks’ you can carry on with life as normal, but if i feel tired i rest.
hope that helps a bit.

Nadia x

Not so bad Hi Paula

I had six FEC, which finished the first week of May. I really didn’t have that many side effects. I found sucking on boiled sweets, such as cough candys helped to ease the metal taste in the mouth. I also found that I wanted things that had a sharp taste, like fresh pineapple and lemon and lime juice. My hair fell out after session number two, but I was never a complete baldie. I did find that my toenails and fingernails turned black, but just hid this with nail varnish. I think the thing is to try and go with the flow. If you feel tired, then sleep. I still went out and away for weekends. I’m now half way through rads (which I have for 6 weeks) and now finally feel that I’m getting towards the end. Hope everything goes well for you

Sarah x

Not that bad… Hi Paula

I was diagnosed with BC in July 2005 at the age of 30. I had 8 doses of FEC and then radiotherapy, herceptin and have been on Tamoxifen for about 15 months.

I have to say that I had a lot of people rather unhelpfully telling me that Chemotherapy would make me feel dreadful but it really wasn’t that bad. I managed to work for 2 out of the 3 weeks of every cycle (although I am self employed and so can decide how much or little I want to do). I used to get up and get dressed every day but would usually sleep for a couple of hours every afternoon. I didn’t ever vomit although i did have a few days of feeling mildly nauseous - a bit like travel sickness.

You should expect your hair to start falling out on about day 14. I got a friend to shave mine off as soon as that happened, but my hair actually continued growing in patches throughout my treatment and so I had a reasonable head of hair again about 3 months after it finished.

I continued having periods throughout Chemotherapy, but they have been incredibly irregular with Tamoxifen (3 in 18 mths) so I don’t really know whats going on there. I was initially also having hot flushes at night with the Tamoxifen although these seem to have subsided now. Again it’s all very manageable.

You might want to watch this video on the Breast Cancer Care website. it’s only a couple of minutes long and is basically one young woman (like us) talking about her experiences of treatment. Just click this link and then scroll to the bottom of the page.

breastcancercare.org.uk/content.php?page_id=6246

Hope this is all helpful to you. Please don’t hesitate to ask if you’ve got any more questions.

X

Thankyou for replying, it helped. It has put my mind at rest that it isn’t that bad. I ordered a beautiful Du-rag scarf off the net yesterday ready. I have decided not to have the cold cap. For me it would just be an extra stress so as soon as the hair starts coming out, out come the clippers.

Thanks again

Paula xx

Hi I had 6 sessions of FEC and managed to keep hold of my hair until the fifth cycle, although it was very fine by the time I made the decision to shave the rest off. I used to disguise it buy wearing my hair up all the time and a scarf around my hairline so people could’nt tell it was thin.
I did feel quite ill throughout my chemo, toward the end I was being sick a lot and felt dizzy and could not eat or concentrate. Please bear in mind this is all normal. Hoepfully you will be like the other ladies and feel better. I also had radiotherapy for 5 weeks which was a breeze compared with the chemo. Just a pain going to the hospital every day, as long as you moisturise the area being treated 2-3 times a day you should not be uncomfortable at all. I used Aqueus cream, you can get it from the chemists.
I am also taking Tamoxifen , which I am not really getting many side effects from. I have little dizzy spells now and again but apart from that all is fine.

I hope this helps.

Nicola

Hi Paula,
This is my first time of joining in a chat so bear with me!!
I have had 3 sessions of FEC and 1 of 3 sessions of TAX, to be followed by 20 Radiotherapy and I think Herceptin and Tamoxifen-I’ll have to check-all this chemo’s taking its toll n my brain cells!!
I’d just like to say that the FEC sessions were nothing like I was expecting-I had the cool cap for the first 2 but hair went so thin that decided not to bother anymore. The only thing that bothers me when I go in is getting the IV canular into a vein-the nurses know now that my veins aren’t very willing so they have a nice hot sink full of water for me to put my arm in for 10mins which makes it easier!
I totally recommend reiki as a complimentary therapy while all this is going on-I believe its the thing that keeps me calm anyway.
My advice to you is try and make the day as special as you can, I meet my mum on the train early morning, we have a couple of hours retail therapy-its nice to have presents to look at and reward yourself with!!-have a nice lunch out then off to hospital we go-we have lots of laughs all the way through with the chemo nurses-they’re absolutely fantastic. I don’t dread going anymore-it’s quite an event!
I have remedies for various side effects further down the line if you need any-just ask.
Good luck, just remember you’re not alone and just go with what your own body tells you to do, oh, and most importantly-keep smiling!!

Tracy xx

Hi Paula,

I am a bit behind you. I was diagnosed three weeks ago and received the news today that my lymph nodes are clear (Yippee). Like you I will be having radiotherapy and tamoxifen and am interested to hear about them but I have been given the choice over having chemo as it will only give me a 1 to 4% benefit in the long term. Upshot is, let me know how you get on. Some of the comments are really good as I have an 18 month old and 6 year old who wear me out now so need to think of getting help in if I do go for it. Like the idea of making a special day of it though Tracy - good one.

Hi Kirsty

Great news that your lymph nodes are clear! 1 out of 10 of mine are affected so I guess thats why I decided to go for the full whack so to speak! Its a difficult decision-good luck with whatever you decide, I might’ve felt different if my children were as young as yours. Even though I’m only 39-yes ONLY!!!-my kids are 21 and 16 so they don’t take much looking after any more. I do have a 2yr old grandson as well and I will say that it is difficult for me to look after him on my own now-just don’t seem to have enough energy!! Still there’ll be plenty of time for that when I’m done. Anyway, good luck to you for when your treatment starts-try not to listen to any horror stories as we’re all different-fingers crossed you will sail through with very few side effects as I have so far

Take care
Tracy

Hi Kirsty and Paula
I have a 5month old and a 3yr old and am now between 4th and 5th FEC. It has been a roller coaster ride so far. When I am well on the 2-3 weeks after treatment all has been good. However I am lucky as my husband only works part-time and he is the main carer for my 3 year old and now is for the baby. I am on maternity leave, of sorts. I wouldnt underestimate the need for help, it makes the nice time much much better if you are not trudging along for all the time. The care of our children is split between my husband (2 days), the nursery (3 days for 3 year old 1 day for baby), and my mum for 1 weekend in 3, and me (2-3 days) the nursery are fantastic and have always found space for extra days and have cared for the baby for the treatment days and 1 day per week since she was 3 months - not my ideal choice but they love her to bits and she has a great time there. When my mum has my 3 yr old he stays at her house for the weekend this gives me and more importantly my husband a break as we just have the baby at home. I have great days with the kids, some days I am under the weather, but also make sure I have some of the good days to myself, with just my husband or with friends. Must confess that I also have a cleaner who comes once a week. This all adds up to a bit of extra cash, but its only for 4.5 months.
One thing I can tell you is that if the oncologist and nurses are anything like mine they do their utmost to keep you healthy and at home. I was neutropenic after the 1st FEC, and so for subsequent ones was given G-CSF to boost the cells. I havent had any infections and my cells have been fine since. This is really important as I cant avoid the children when they have colds etc. One week I was the only one left standing as my husband and kids all got tummy bugs and were laid low.
I have kept a lot ofhair with the cold cap and am still getting away with a baseball cap when I go out of the door. This is great for me as with the kids in tow you dont have time to faff when going out. One minor point is that I was told not to have too much close contact with the baby for 72 hrs after treatment. However, for 72 hrs after treatment I am laid low so couldnt do much with her anyways.
Hope my experiences help in making your choice.
The red stuff - as the epirubicin is fondly called by the nurses - is certainly doing its job. My tumour has shrunk by over 50% after 3 treatments so imagine what it does to any stray cells.
I still have my surgery to come - so in a way you are one step ahead of me. I have that brdge to cross with the kids to look after etc. But should all be over by the Autumn
Take care
Jane

This has been very helpful fo rme as well…hope you don’t mind me squatting here and taking all this good info with me! I am starting the first of 6 FEC on Monday… I am not nervous any more, just want to get it started, lose my hair, let the children face paint my head a few times then finish with it all and try and get back to some sort of normal life. I will be having hormone treatment as well but I don’t know which…I forgot to ask!

Big hugs to you and hope you sail through without one side effect.

xxx

Hi Paula, I finished my chemo in January and rads in Feb. I started tamoxifen in Feb. I was 48 in May but very definitely pre menopausal before I started treatment. I have had no side effects from the tamoxifen at all and I take a generic one, not Nolvadex. I have no menopausal symptoms at all and no problems with it. A lot of people do have problems, but not everyone.

Regards
Geraldine

Hi everyone hope you are all ok. I haven’t been on for a while. I had my first FEC two weeks ago today. I wasn’t too clever for the first few days but it wasn’t as bad as I thought. I had the sicky feeling for the first 4 or 5 days. The steroids and anti sickness tablets gave me terrible stomach cramps for the 3 days that I took them, gonna speak to the nurse about it next week, but other than that I’ve been fine. My hair is coming out now though, as I decided not to have the cold cap. ( I think its a great idea to let the kids face paint your head).

I have been told I can’t have Tamoxifen as I have a blood clotting disorder, so its either ovary removal or injections once a month. I suppose the ovary removal would be the best thing but haven’t discussed it with the oncologist properly yet.

I have been searching and searching for headwear as I don’t really fancy wearing a wig. I haven’t been able to find anything I like in this country so I decided to do something positive and start up my own business. I’m making bandanas, doorags and scarves. www.bandanasrus.co.uk It may not take off but if it does then it’ll be great. It will give me something to focus on and keep my spirits up, which sometimes I find hard to do.

I have a forum and guest book on there if anyone want to come and say hello, or give me some suggestions or ideas.

Well I’m off now but I will try and come in a bit more often as I have found the support is great on here.

Paula x

Hi just thought I’d give you all some hope. I haven’t posted on these forums for a very long time. I was 35 when diagnosed had 6 sessions of FEC and 15 sessions of chemo, had two years of chemo and 5 years of tamoxifen, that was all five years ago and I have just been signed off by my bc team and oncologist. When I was diagnosed I used to get awful feelings of not being able to stay positive but here I am five years later, still alive and living my life. I took everying that was offered to me and I have no regrets.

Here’s hope to you all.

Best wishes