Hello everyone.
I am new to the Forum today. Up to now I haven’t felt the need to make contact with others going through breast cancer but I think the time is right to start now. After a mastectomy 2 months ago I’m still waiting for chemo to start which is very frustrating, I want to get started asap. I’ve been told that it could start in the next couple of weeks and will be FEC treatment. I live alone and am concerned about coping with the side effects. I’ve been advised to have my hair cut in advance of the treatment & told that my hair will go completely & quickly. Has everyone found that to be the case? Is there anyone out there living with this on their own?
Thanks, All J
Hi Alli J
Welcome to the forums, I’m sure other users will be along to support you soon. In the meantime you may want to call our free Helpline on 0808 800 6000, lines are oprn Mon - Fri 9.00 - 5.00 and Sat 9.00 - 2.00
I have also attached a link to our Peer Support Service
breastcancercare.org.uk/about-us/our-services/someone-to-talk-to/peer-support/
best wishes
June, Moderator
Hi Alli
I am halfway through 6 x FEC and still have some hair - not a proper head full by any means and my head is shaved, which I did when it began to fall out in significant amounts.
In terms of side effects, I do have 5 horrid days, during which I mainly sleep and feel nauseous. I don’t live alone, but do spend long periods on my own - ie oh and kids don’t stay home and look after me, because thats not what I need. There are a range of levels and types of reaction, from what I’ve read on here. Once the 5 days are up, I am OK - tired but not ill or anything. I am on sick leave, was advised to not even try to work through chemo and for me that was right, but I do know that there are people working through FEC.
I hope that’s some help to you - let us know how you get on!
best wishes
monica x
HI Alli
I’m halfway through 6xFEC and still have my hair. I have used the cold cap and it has been mostly successful. My hair has thinned and is going particularly thin on the very top, I think this is because the cold cap doesn’t touch my head properly here. I will probably have a bald spot there by the end of it which I will cover with a stretchy headband. I have a chin length bob and have had to have it cut once during chemo so far. I am aware I am unusual in keeping my hair - it’s the only side effect I haven’t had so far!
good luck with things, it’s pretty unpredictable. One thing you will probably not be able to do during the few days following chemo is cook for yourself - I really can’t face it although I do still have an appetite once it’s put in front of me - maybe cook in advance and freeze portions you can heat up or get a friend to cook for you - you need to eat to keep the nausea at bay.
Helen.
hello Alli,
My experience was thus;day 14 when it was supposed to fall out was last Boxing day,nothing happened until day 18. The day started as usual then mid-morning a sensation started on my scalp which was quite strange,nothing Id ever felt before,it was a cross between stinging and freezing cold and it got slightly painful then it started dropping out VERY quickly.Every hour,I leant over the loo and brushed it and I was as good as bald by bedtime. The eyelashes took some time to go as did the eyebrows,the pubes will also go but sadly the leg hairs dont. Hair loss caused me to cry more than my diagnosis but the hair thats grown back is the best Ive EVER had,
its thicker and more obedient than my old hair albeit curly,a word of warning though,all my downy,fluffy hairs off my face vanished during chemo causing friends to say how nice my skin was. As chemo ended,all this fluff grew back with a vengeance ,fortunately it was blonde or I wouldve looked like a werewolf! Hope Ive not upset you at all,youll be combing your crew-cut in summer.
best wishes to you,love Mags x
Hi Alli
I’ve only had one FEC so far (8 days ago), but have been lucky to have virtually no side effects (constipation and a slightly sore mouth) and have carried on as normal. You should be given anti-sickness medication, and possibly also steoids to try and counter the main negative side-effects of nausea and tiredness. I have been able to drive, been to work and been able to cook. I don’t live alone, but I would have been able to cope if I had, and still do the bulk of the housework and chores!!!
I can’t say how future treatments will be for me, but so far, so good.
Do you have local support and friends? If so, I would prime them that you may ask for help, whether that is lifts to shops, some casseroles delivered, or just fetching things from the pharmacy or wherever. If you are prepared, you will at least have a plan in place and then hopefully won’t need it.
As for hair, some people seem to advise chopping it short before it goes, but I’m going to hold on to mine until the last. Most people seem to find it goes between days 13-18 from what I can see. I’m not bothering with the cold cap as if it is gonna go it might as well go fully (IMO). You should be given an NHS wig (mine came from a local independent wig supplier on an NHS contract so is good quality), and many find they get on with scarves and hats OK. I wait to see, as mine is still holding on so far…
Take care
Flora xx
Hi Allie J
Everyones reaction is so different it really is a case of wait and see but best be prepared for everything in advance if you can so that you can cope if it hits you bad. Im just about due for my second FEC and havent really found it too bad. Had quite a few of the usual side effects but all manageable. A good piece of advice was to make a day to day list of all the side effects and take that with you when you see the oncologist post first session so that they can tweak the meds they give you to help out the second session. I havent gone with the cold cap and found hair starting coming out around day 13. Quite a lot comes out when I run my hand through it but not as yet noticeable to the outside world so am holding onto mine before having it cut short. I see it as every day with hair is a day less of being bald but some find it easier and more positive to take control at the beginning and have it shaved!
I think I could have coped on my own this first session but not sure I would have been able to carry on working - you must be good to yourself, eat and drink when you can and rest as much as possible. good luck when the treatment starts!
Karen xx
Hi AllieJ
Like you I also live alone (just divorced when diagnosed). I start FEC on Friday. I’m just gonna go with the flow as I dont know what side effects I may have. If I puke, i’d rather be alone; cant bear the thought of my Mum fussing over me and trying to mop my brow!!
Julia xx
A big thank you to everyone who replied to my original post. I now have a start date for chemo of Thursday 19th November, FEC x 3 followed by Taxotere x 3. It seems that the side effects affect different people in very different ways so I’ll just have to wait and see what I get but it’s very helpful to read all of your comments. I hope all of you are keeping as fit and well as possible xx
Hi Alli,
I started FEC on Friday - 2 more to go then 3 Tax like you. It’s only day (night?) two and so far so good in terms of side effects. Was sick on Friday evening - but other than that, so far, have been OK. Had my hair cut short on Thursday - not shaved, but just short so that I felt prepared and given what others have said, am expecting to have to shave it in the next two weeks.
Best of luck next week. x
Hi
I too had my first FEC on Friday. I must be blessed cos I’ve had no side effects whatsoever, save the red wee!
Julia xx
Hi everyone
It’s really good for me to read how you are getting on and to know that some of you are not experiencing really bad side effects. I am due to start chemo 3xFEC 3xTAX(will know Tuesday when) Some things I have been reading really frighten me and it is reassuring to know how poeple cope.
Keep strong
XM
Hi Alli
Like you I am having 3 RC followed by 3 T.
Had my first FEC on Weds and so far so good, have been pleasantly surprised. Felt very sicky for few hours of first night but fine since. Quite a lot of energy may be the steroids though so will have to see whether that winds down now their finished.
Like you say you can see some threads where some poor begger is having a real bad time of it, but it doesnt necessarily mean it will happen to you or even if you do have some of those effects that you will react in the same way. Try to keep any open mind and take it as it comes, often the reality isn’t as bad as what you anticipate.
Keep strong and good luck
Alex xx
Ps
Has anyone else been having really wierd dreams, not nasty ones just really wierd (forget the Easter bunny you should see what the halloween bunny looks like chasing you down the street!!)
Hi there
I too am new to the forums having just “discovered” them yesterday afternoon and I’m so glad I did! Up to now I’ve been confident with my care and treatment, and with my husband’s unwavering support we have managed to work through more or less everything and haven’t felt the need to seek outside reassurance. However I have just had the “week from hell” following my second cycle of docetaxel/first Herceptin, and just started to trawl through the websites seeking “answers”. The many many posts I have been reading on a huge range of topics have boosted me no end and helped me realise that what I am going through is “normal” (albeit unusual) and that there is light at the end of the tunnel. Thank you everyone.
Maybe then can I just seek some reassurance about the chronic side effects I experienced last week and that they are in the realms of “normal”. I am on 3xFEC/3xdocetaxel plus Herceptin started with the 2nd docetaxel. As I mentioned, last week I had my second docetaxel. I knew one of the side effects would be joint pain - the first cycle didn’t seem so bad - mostly confined to back ache - but this second one the joint pains were agony - all over my body - to the extent I could hardly walk and more or less spent 5 days in bed - alternating between paracetamol & codeine to try and get some pain relief - and at night I would experience an episode of “hot shivers” like when you have flu and your body aches, your skin feels hot and tingly but you can’t stop shivering, and your temp starts going up but soon comes down again! Also experienced sore mouth (though not too bad) and rotten taste, but these were nothing compared to the pains.
Hope I don’t sound a real misery guts but it would really help to hear that what I’m experiencing is “normal” and then I can be better prepared for the fall-out from my 3rd docetaxel and final (yippee!!) chemo cycle - I know we have to go through these things and have to ride it out but it is good knowing that I’m not alone. I will definitely continue reading the forums for support. Thanks again everyone. Good luck to you all.
marym xx
Hi Mary
Sorry to hear you’ve just started having some bad side effects. I think most people following this thread may still be early on and still on FEC, so we probably can’t comment on what it is like when you’re on Tax & herceptin.
I have that to come (I think my first Tax and Herceptin will be due on new years day!), but so far have only had one FEC and not have any side effects worth mentioning. Like you, I have continued to work throughout so far.
You may want to start a new post to get some better answers?
Take care
Flora xxx
Hi Flora
Thanks for that - I’ll give it a go!
Good luck for your further treatment.
Mary xx