I am trying to find people for chat and support etc. I am 44 with invasive, stage 2 ductal. Chemotherapy is to be given before surgery and rad. This starts on 17 Sept and I am really scared about the side effects.
I am quite a quiet private person and not used to all the attention I have been getting since diagnosis. Sometimes wish the phone would stop ringing so I can think straight.
IMy chemo is to be FEC. Anybody out there having this or about to have this?
Sunny1
xx
Hi,
Welcome.
I had my last of 6 FEC at the end of June, the side effects were mainly nausea and fatigue, it’s not nice but doable. Make sure you drink plenty or water and get as much rest as you can.
I found the constant phone calls and visits from family and friends very difficult to deal with, I know it’s only because they care and are worried but I needed time to get used to the idea myself. Eventually it did calm down and I have appreciated their support and help.
If you let people on here know where you’re having treatment and the general area where you live, you may be able to arrange meeting up. That has been a great help to me.
All the best to you
Hi Sunny1
i had 4 fec and 4 xeloda but post op - mastectomy for lobualr invasive cancer - and i have now finished rads and on tamoxifen - but as White dragon says - it’s doable… i had just tiredness as side effect - oh and the hair but i only felt grot for a few days after FEC.
People are here for you - don’t worry about that… you can yell and shout… you can cry and i promise you that you will laugh at times too.
take care
jen
Hi Sunny,
Iam on 3xfec then 3xdocetaxel then 13 rads. I had my 2nd fec chemo today last one was not as bad as i thought it would be,bit sicky for a few days but ok. keep on looking at the forum you will get lots of advice and support been great for me xxx
Hi Sunny1,
I’ve just seen your post. I’ve just posted for the first time day: Neoadjuvant Chemo in the general ‘Undergoing Treatment’ Category if you want to have a look.
I’m about the same age as you, similar dx, but different chemo drugs (epirubicin/docetaxel).
I’m nearing the end of six months of chemo and it has been a long haul, as it is for everyone, but you will get through it, and there are advantages to doing the treatment this way round. Are you having any node sampling before you start your chemo?
Lomalinda
xxx
Hi Sunny
I’m 47 and my dx is the same as yours - diagnosed in July. And I am having the same treatment, 6 cycles of FEC then surgery and radiotherapy. I also had node sampling.
I’m starting my second cycle of chemo on Monday. The first round was not a scary as I thought. Main side effects were extreme tiredness and just feeling awful for the first week (plus constipation etc which I now know how to deal with next time).
I used the cold cap which also wasn’t that bad - however, a small amount of my hair came out today so I don’t know whether it has worked or not. I also had a marker put in today.
However I have been back at work full time this week - part time last week and coped reasonably well.
I know what you mean about phone calls - my BC nurse suggested an answer phone so you can deal with calls when you want - most people phoned me when I just wanted to sleep!
I’m sure you’ll get through it and hopefully the first lot won’t be as scary as you think.
Lynn
Hi Sunny,
Being a private person myself I think I can relate to the feeling you have when everyone feels it is polite to ask you how you are. Mind you, looking from there side I suppose they may think, you think, they don’t care if they don’t ask.
I remember a friend of mine never asked how I was and when I asked her why not, she said ‘Perhaps you don’t want to be reminded of it and are a little fed up with being asked’. So there I am, happy not to talk about things, miffed if folks don’t care!
Anyway back to your question about FEC.
First remember this, the blooming cancer treatment path is a very individual thing. Some people seem to get away with a few side effects from FEC others have had a bad time, perhaps more posts will help you identify with any side effects you have thereby easing the worries when they do occur.
For myself it was not too bad, some nausea, little sickness and a week of tiredness. Constipation was a real problem though. Hair loss after about three weeks was not as traumatic as I thought. It is quite a distant memory now, please forgive me if I say it is rather like childbirth you forget it after a while (Except chemo lasts much longer!).
Take a day at a time whilst on the chemo, there is light at the end of that long tunnel and it isn’t a train.
Good Luck
Carol
Thank you all for your responses and kind words of support.
I do realise that family and friends are well meaning and I’m sure I’ll appreciate their support when given, but suppose I’m not used to being the poorly person.
I live and will be having treatment in south Hampshire, is anyone else?
Jen - You must be at the end of the worst period, hope all continues to go well. Thanks for your words.
Lomalinda & Iah60 - Good to hear from people with almost the same treatment. FEC for me will be for 6 cycles, but wasn’t offered node sampling. When would they do this? How do they do this? Hope the hair loss isn’t too distressing. I was also told by the oncologist that I could try the cold cap if I wished, but not sure whether to go for it. I have just booked an appointment with a wig supplier for next week. Thought I might try a new look when I lose my hair.
It seems that the side effects for you all have been relatively okay and just about bearable. This gives me hope that I may not experience bad things. Must remain positive.
Sunny1
xx
Hi Suny,
I know what you are going though, I start my chemo on 15th Sept and like you feel abit scared but we will get though it. I am going to try the cold cap on my first treatment but will see how I will get on.
Like you my phone kept ringing all the time but what I done was told the news to one of my freinds and then got them to tell others it saved me from telling them.
As for family they just want you to know that they are there for you.
All the best for the 17th and I’m sure you will be fine just keep strong and remember you are not alone .
Lorraine xx
Hi,
I start my chemo on Monday 8th September and like you I am petrified. I feel that the thought of chemo is the worse part because of the unknown. I am going to give myself a treat every month which I can look forward to during each session even if it is just a facial or smething. I am trying out the cold cap because I want to save my hair as much as possible. Incidently can anyone suggest any good remedies for keeping the hair stronger during this time (if thre are any). At the end of all this (sometime next year) My partner is aking me away for a fab holiday and that as well will keep me going.
Most of my family and friends have been fantastic although my Mum is finding it really hard to cope. I have to be all upbeat around her because otherwise she gets weepy and drives my poor dad mad afterwards. She has not even given me a hug throughout all this and i find myself supporting her in stead of the otherway round. I am dealling with this by just distancing myself. Is anyone having chemo at Windhester at all?? It would be lovely to hear from anyone.
Hi Sunny1
About your chemo queries on the other thread:
Have you seen the thread “Top tips for going through chemo?” It’s very popular and recommended reading!
If you’re feeling anxious about the first day, why don’t you go and have a look at the ward you will be using beforehand? I did, they let me have a quick look around and then it was one less “unknown”.
Do you have a dedicated BC Nurse? Mine / ours comes along and sits with each of us for a few minutes during the session. If you’re on your own I find that I end up chatting to others and I made a really good friend that way!
I’m guessing that you might be worried about feeling sick. I never did, but I know plenty of people who had bad nausea. They will adjust things to things try and minimise any discomfort you might have.
I was told that with the antisickness tablets they give you to take them on schedule as they are more effective if taken BEFORE any nausea starts…I don’t think I ever finished any of the courses they gave me.
Hair:
I don’t know about FEC, but I lost all my hair, body included. Though I’m proud of my two eyebrow hairs and my eyelash stumps, and have developed an evolving make up technique to make me feel more like myself!
I cut my hair short before I started chemo and it really was much better when it started to go.
if your hair is long enough, you might want to think about a hair charity like Locks of Love.
I donated mine and it felt SO much better and not such a waste!
Hope that helps. let me know if there’s anything else.
Lomalinda
XXX
Back again Sunny1,
…as I’ve just seen your question about node sampling!
I was thinking about a Sentinel Node Biopsy.
Basically, it’s a surgery to remove / sample a small number of lymph nodes in the nearest armpit, as that is usually the first place BC will spread. They are a sort of drainage system and we all have differing numbers and placement of these in our bodies. There is supposedly ONE key node and they use two methods of marking it before surgery, dye and nuclear medicine. They then remove it and a few others and test. (I had 5 removed).
So if you are clear you get to keep the rest and have less risk of lyphoedema. If not, they will go back and do a clearance to lessen the risk of the cancer going there.
If you want to know more I think the Cancerbackup site gives more detail. By the way, if I’ve got things mixed up here please do chip in and correct me anyone!
This isn’t offered at every hospital and not everyone is a candidate. My first hospital didn’t offer it and never told me about it, (I found out online) so I had to ask for a referral to a different hospital.
I don’t know if there is an optimum time during treatment to perform the surgery. Anyone?
I don’t know your full diagnosis and would never presume to suggest that you might be a candidate for one. I had this procedure as I had suspected lymph node involvement. Thankfully I was clear!
Hope that helps!
Lomalinda
XXX
Hi Again Sunny1
Node sampling is as Lomalinda describes. It checks whether the cancer has spread to lymph nodes in the arm - if so it means a bigger operation when the lump is removed. It was done under a general anaesthetic and I was in and out in a day. The worst bit was the radioactive injection the day before which was uncomfortable, a bit like a biopsy. Also the blue dye which stains round your nipple for up to a year! Not all surgeons are trained in the procedure apparantly so it isn’t offered everywhere at the moment. I also don’t know whether this is the optimum time - I assumed my surgeon knew best.
Cold cap wasn’t as bad as a thought - I had an ice cream headache for about 20 minutes and then almost forgot about it. It does make the treatment longer though as it has to be on for about half an hour before treatment and two hours after. It’s worth it if it helps keep you hair though.
Forgot to mention in the side effects post above that my taste buds vanished in the first week and everything tasted like cardboard. I was advised not to eat anything I really liked for the first few days in case I went off them. I also had a very dry mouth so drank a lot and had loads of ice cubes and ice lollies (thanks to the tips on this site!).
Hope your first chemo goes Ok and isn’t as bad as you think
Hi Sunny,
I had my 1st FEC on 21st August (altho’ I’ve already had 2 rounds of surgery) and I’ve been really lucky in that I’ve had virtually no side effects to speak of. A little bit of a sore throat and stuffy nose and watery eyes on the day of the chemo. And my hair is just starting to come out (I didn’t do the cold cap…I wanted to make sure the chemo drugs reached every part of my body…scalp included!!). I’m not doing a wig (altho’ I may get something in turquoise…) but have acquired a number of hats/buffs/scarves that I’m sure will do just fine.
I’ve been working as normal so far…trying to keep things as ‘normal’ as possible for my family really. I’m under no illusions and I know it’ll be harder with each cycle, but a positive frame of mind definitely helps me!! I don’t like what’s happened but I’m just geting on with life in the meantime…I couldn’t sit around waiting for the side-effects to happen. It’s a year out of your life, but my Mum went through it last year (same as you with neo-adjuvant chemo) and now says she feels better than she’s ever done (although she would like radiotherapy to her non-affected boob to make it as perky as the other one…).
I’ll be thinking of you on the 17th (my 2nd is on the 11th).
Sarahxx
Hi Sunny1 (and everyone else starting chemo shortly or just started)
Firstly I’m going to apologise - I talk ALOT! My job was talking to people 12 hours a day 5 days a week and now that social aspect of my life is missing I get a bit carried away 
I am 37 and was dx 12th Aug and started FEC chemo on 28th Aug. I’ll let you know how I get on with my course… I don’t know what size or stage my cancer is at - my doctor says they can’t tell as it is surrounded by a cancerous tumour the size of a large egg. I am away however that it is very agressive - grown from nothing in 6 weeks which is why I went for chemo straightaway rather than a mastectomy and then waiting for chemo - i wanted to start zapping the alien within asap. I don’t know if my doctor is sheilding me from “bad news” even though I told him not to take the soft approach with me, and not to soften any news. I guess the fact he told me its agressive and he’s scared it may spread is proof he listened!? I’ve had body scans and MRI so its not showing anywhere else - yet - but again thats what the chemo is for. I look in the mirror and think my boob resembles a large mouldy peice of fruit - its purple and nasty and looks like it needs to come off! But I have to wait 3 x FEC to see if it shrinks before they know if I need mastectomy and more chemo, or finish the chemo and either mastectomy or lumpectomy. Cos of the cyst I am on crazy painkillers which can space me out so I don’t take as many as I should as I’d rather have my wits about me and wince in pain rather than be dribbling on sofa!
I too have been inundated with phone calls and texts from friends and family - so much so that I’ve had to up my mobile contract call plan for my responses! Little Miss Popular 
But i have kind of said quite early on that I am happy to speak people but that I don’t want to sound like a robot repeating the same thing over so can’t phone everyone every day - and also that i don’t like talking about myself too much as it seems a bit “me me me”, and have also told a few key people (eg mum / best friend / partner) - who spread the word for me that I turn my phone off at 9pm and also as I get tired very easy and sleep at random times now so not to be shocked or feel neglected if I don’t answer. I think you need to be upfront (pardon the pun) with everyone asap what kind of correspondence you need. Once its said its done and then you can get that worry out of your head and move on to getting through this. Which is the important thing really. I have my partners mother on the phone asking why I’m not phoning her every day. But I have my own mum to talk to - and in fact this breast cancer has brought me and my mum much closer very quickly so I am focusing on my relationship with her rather than worrying about phoning other people. I know that may sound callous and I find my self apologising daily for not being more caring towards others! I think a common issue is that we ladies end up worrying more about upsetting people or feeling as if we’re being rude instead of actually realising who is the most important person to be concerened about - US!
Anyway back to the chemo. FEC - I actually like the name of these drugs - I think they are very fitting (as in “feck” ala Father Ted) and becuase the F stand for the drug 5FU which is what I am saying to the alien, as my mum calls i (she herself now past the 5 year mark for surviving cervical cancer).
Like everyone else says on here - the side effects vary from person to person. You just don’t know til you try it unfortuneately. Mentally I see chemo as Pacman munching away at the cancerous cells. May sound mad but it helps me focus sometimes!
I was warned that the after effects would be like a week long hangover - and I find that a very good analogy. Although I get shockingly bad hangovers (often lasting til 8pm) with chemo the “hangover” is often gone by mid pm so I find personally I can handle throwing up a little. I was given anti sickness tablets - which I still take every morning as feel very nauseus but am no longer being sick. I guess without them I would have been much worse. Just make sure that you drink plenty of drinks with vitamins in - I recommed V8 vegetable juice - its tangy and even if you are sick a bit the essential stuff will have already got into your body. Also water I now find tastes rank and we are meant to drink so much of it to flush out the toxins. I suggest investing in lucozade - you may need the energy and calories - and some flavoured water. Also I have a permanent metallic taste in my mouth - which even though I get up twice in the night to either brush my teeth or swill with mouthwash - just won’t go away. I have found soft Haribo are brilliant. I keep a pot of them by the bed and nibble a couple to relieve the taste. Hey its great it being ok to eat sweets in bed now! Obviously all the sugar isn’t great for teeth but for 6 months of my life I think what the heck!!!
However its the tiredness that gets me. As I said I’m used to working 12 hour shifts but during week 1 AC (after chemo) its all i can do to stay awake for a few hours let alone consider work. But that tiredness is also egged on by the appearance of insomnia - i used to sleep for England but now if I get 3 hours flat out its a bonus. And the constant dreaming while I’m asleep tires me out even more (on this note does anyone else get insomnia now that they didn’t before - and also the incredibly vivid dreams - the other night at 3am I just had to send my sister a 5 page text describing in detail my dream about us - bless her she has nuiscance neighbours keeping her awake and was pleased to get something to amuse her at that time of night!). However i am now into week 2 AC and I although I’m awake by 5am I can now last till last afternoon / eve before needing a nap. But because of that don’t get to sleep til 12 or 1am. Vicious circle
Now at day 9 AC I find that mid morning is the best time for me - i feel awake and happy enough to make the phone calls to people rather than them phone me.
My appetite has halved and I’ve lost weight, which isn’t great as this is now the time where I need to mind my immune system cos of the white blood cell count - again back to V8 juice and soups are good. Some people mention that they get constipation - this hasn’t affected me yet - infact I’m more regular than before!?
I’ve had very long hair cut into a really short bob, and have bought an abbundance of hats (I may get some shares in Accessorize) so am waiting for my hair to drop. As I’m having FEC my consultant and the Marie Curie nurses said cold cap wouldn’t really do much for me - although other people appear to have had different recommendations and have found the cold cap works ok. I have an appt with the wig lady on Thurs so we shall see what she comes up with! In fact losing my hair was the thing I was the most scared of but I think as I have a few weeks to get used to the idea that its going to happen I am trying to mentally prepare myself for it. I’m sure I will crying and sobbing before the next 2 weeks are out but once its gone I need to make myself see it as another step closer towards getting better (somehow).
I completely agree with darkshadowfalling/sarah - a positive approach is extremely important, I’m under no illusion that I am sick, and that this will appear more physically as the months go on, but I make myself get out of bed every day (earlier now than if I had a day off) even if it just to sit on the sofa and surf the tv or internet. It is just a year out of our lives. All we can do is get on with dealing with what we have been dealt. I’ve been advised against going in to work due to the office conditions - large open plan with 100’s of people, air con and 40% of staff of sick at any one time - too high a risk of infection so have been signed off for at least 6-9 months. I keep myself as busy as I can. Mostly writing endless list of things that I need for the house and garden once I have the energy to get out and have gone past my Day 10 AC - aka low immune system day (tomorrow). Hey has anyone else been given dates like this? I feel like I’m getting different advice than some other ladies!
Anyway - I think I have warbled enough now. Hope that my experience so far helps you Sunny1 and anyone else about to start or just starting chemo. I think it may help to compare experiences. I kind of stuck my head in the sand a bit to start saying I didn’t need a support group - but who am I kidding?! I need to speak to ladies who are going through this as much as the next girl.
lots of love and positive thoughts to everyone
Ems x
i’ve just reread my above thread which I should have read before posting!! so as not to scare anyone too much I need to say that I have a cancerous CYST the size of a large egg with a tumour of unknown size within it. to me its all pretty much the same thing, but I know the docs see it differently.
ems
Again, thank you everyone for your kind words.
Gosh EmmaG you weren’t kidding about the talking a lot! However, really enjoyed reading your thread and laughed a lot re the Father Ted link because I had the same thoughts. You’ve got to find something amusing wherever you can.
Thanks for the tips for the chemo. I have also got a wig appointment next week and quite fancy the idea of one that closely resembles my current style and one completely out of character for a change.
Insomnia started for me as soon as I realised cancer was a possibility at the biopsy a week before I was told. It has settled down a bit, but will get worse as the 17th approaches and then carry on.
I have also decided not to go to work due to the risk of infection and because I enjoy being at home quite a lot. But I will miss the social aspect. I too can imagine myself getting out of bed early only to sit on the sofa and become an internet nerd. I keep joking with my family that they will come home and find me sat in the same position with my fingers poised on the laptop, wig askew, fast asleep and snoring. Scary stuff.
My mum has been brilliant and herself just past the 5 year mark following surgery for colon cancer (she’s 71 years young and looks half her age).
Thank you Lomalinda, will post more later…
I could go on, but it’s getting late and my husband won’t go to bed without me. I will keep posting on here my experiences and hope that I can be of support to all you lovely ladies as we all go through this, be it at different stages.
Bye for now.
Sunny1
xxx
Goodness
I’ve just re-read my earlier thread… man that was long! I’m surprised you didn’t fall asleep reading it Sunny1!
My mums a similar age to yours too at 73… she’s currently gallavanting around the Azores at the moment so am surviving on a (expensive) text message a day. Missing her alot wish I could phone her but she is hard of hearing and can’t hear a bean on a mobile phone.
I wonder how many people with BC end up with RSI, from the constant laptop use!? hee hee.
Chat soon
Ems x
Hi Ems
I haven’t managed to post for a while now due to people coming out of the woodwork wanting to see me before the treatment kicks off. I have never been in so much demand! I should be grateful because I’m sure I won’t want to be sociable soon. I have found I get a bit twitchy when I don’t get a chance to go online. Turning into a real addiction.
Only 2 days left before I start the FEC(ing) treatment. The time spent waiting is only increasing my anxiety. Nearly 3 weeks have passed since dx. I just realised that you must be about to have your second FEC. When is it?
Your mum must be back by now and hopefully able to hear you on a landline. Hope she had a good holiday. You must have really missed her.
Getting late again now and am struggling to think clearly due to a hangover, so bye for now.
Sunny1
xxx
Hi Sunny, I just wanted to wish you all the best on Wednesday, I am having my first chemo FEC tomorrow morning. I also have invasive, stage 2 ductal my tumour size is 4cm and onc suggested chemo and op and rads after.
Best wishes
Gul