I haven't posted here for a while but just wondering how everyone is doing.
I've had 4 FEC and 5 Taxol (weekly) and have been feeling fine but sadly it seems the Taxol is not doing the job for me and an ultrasound yesterday showed that my lump has grown slightly since finishing the FEC - I'm having chemo to shrink the tumour as it was too large for surgery at dx.
The good news is that I had such a great response to the FEC (15cm reduced to 4cm) that the breast surgeon examined me yesterday and says that he can operate now. So no more chemo for me for the time being and I'm skipping ahead to surgery. Just waiting on a call from my BCN with the date of surgery but should be having Mx and ANC by the end of the month - just need a little time to make sure bloods are ok after my chemo last thurs.
The next step will depend on the pathology results following surgery but my onc thinks he may give me a couple more cycles of FEC followed by rads.
So bummer that the Taxol hasn't worked but I always knew Mx was in the future so glad to get on and get it over with. Not looking forward to more FEC - esp as my hair shows signs of returning - but will do whatever it takes to beat this thing and at least I know that the FEC did a stonking good job last time! I need to know something works as I'm triple neg so no help from other meds for me.
Hope you ladies are managing ok and making progress toward that tiny light at the end of the tunnel!
Well I'm about to have my 4th chemo this Thursday and am absolutely dreading it. My last one was dreadful and really difficult to cope with. Had dire nausea for two weeks (along with constipation, the dire rear etc which everyone gets I know), felt like I'd swallowed bleach all the tine and was so exhausted. Saw an oncologist yesterday and agreed to try another reduced dose (by 10%) with increased doses of all my meds. I haven't seen the same oncologist twice (seen four different ones so far!) so not getting much continuity of care! Phoned my breast care nurse when I was at my most desperate and she said to speak to the chemo unit so not much help really.
Everyone around me says I should keep going for the kids' sake but they don't have to go through it do they?
The onc I saw was rather inexperienced and had to check with the consultant but he said the six doses are best if possible, so I was very interested to read what other oncs are telling my fellow ladies.
Good luck with your onc tomorrow lily and all the best to all the other ladies on this thread.
Thanks girlies, i will see what oncon says tomorrow. God maybe just freaking out cause not sure how i am going to cope over easter with the 2 kids. So tired. REally hard to stay positive
Hi Evie - really interested that you stopped at 5. A friend of mine did the same and had the same comment from the onc about effectiveness. Like everyone - really fed up with this and keep thinking longingly of just doing one more rather than the 2 Tax I have left.
lilythepink i stopped at 5 FEC as i ended up in hospital twice with neutropenia and i felt so ill ( i had a 1 and 2yr old!.
The consultant said to me anything over 4 was considered a bonus and he cancelled my last one! Certainly worth talking to them about it all.
Had 4th Chemo, carnt believe i have managed to get through 4. I have stopped taking the Lenograstin because i cannot take the pain any longer..... i know it is not wise.
Had a big big moan bout my oconlogist to breast care nurse, finally got appointment to see him this wednesday, i want to know how much difference it is going to make having the last 2 treatments.
Because i really dont want to do anymore.
Hope everyone else is coping well, and being positive
I also hated the thought of doing the school run minus my hair, and avoided doing it like the plague for ages (and the nursery run too!)
I bought a wig(started my chemo mid december 09) and one day got in my car and went to the school, it felt weird, but now i have kind of got used to it and don't mind so much.
Lily, your comment about waking up looking like a boiled egg each morning made me laugh..it just about sums it up doesn't it! Definitely not forever without a doubt!
All the best to you ladies...you are doing good!
Will start chemo next month and not looking forward to the primary school run with no hair, should I start looking into headwear now? Can't believe after all the diagnosis, surgery etc. I am so worried about my hair falling out?
I a still quit new to the forum, due to have 2nd tax ( having had 3 fec), next Friday.
My experiences. Chemo is tough - and gets tougher, just the tiredness and lethargy is depressing.
I am a single mum with a successful business (that I am now in the process of down-sizing), I am very positive and was determined that be was only going to be an inconvenience in my life! I did use the cold-cap for the first 3chemos and have kept most of my hair so far. I just could not face it again last time, as I have bad veins and it was all a bit much!
While this sounds negative, what I am trying to say is that I thought I was going to be super-woman, and be like some of the lucky people on this site with no se's. BUT it is tough.
I told most everyone I know that I have bc! Rather than them think I am poorly/grumpy/messy kind of person. While a couple of friends have let me down, most have been amazing and I have made two new friends from it ( Mums at the school who have had experience of bc, so know that real support is needed.)
BUT you have let you friends in. I did not at first, sort of told people I was fine, and then after my 3rd FEC I was really ill with a cold and luckily my sister was staying, she told all my friends how bad it was and it really broke down the barriers and cracked my 'superwoman' facade.
NOW I have scheduled in a friend to pop over for a quick lunch (bring lunch with them!) every day for the week after the chemo. I think it is important to try not to whinge on, just tell them in a factual manner what is happening, and then as soon as you say "so how was .....your day/hoiday/kids play etc?" most people are more than happy to start talking about them selves, which is great, b is everywhere, so thinking about other people is a great escape.
I've also arranged play dates for the kids ( and try and repay the favour when I am in my 'well' week).
Let people help - you are doing them a favour, by giving them a chance to feel good about themselves lol!
The school thing is the pits, i didnt tell anyone about my treatment, but some how it still got out, I have been avoiding the school run, just because i was sick of the pity, people coming up to you saying in an insincere voice ' oh how are you'.
having said that some of them have been really nice, when i have been to the school, i put on the wig, fake tan, false eyelashes and a tonne of makeup, and have had some favourable comments, how can someone looking glam be going through chemo.
Just make yourself look good, and you can face anything, my wig is great, see my picture.
I dont have any bad hair days anymore, although it still needs looking after, and i am worried it isnt going to last more than another month or two, with constant wear when i am out.
Cannot afford to buy one, and wont get another on the NHS, so not sure what to do about that.
I wear scarves round the house, boho chic, although i have looked like a gypsy at times when i have added the big earings.
I enjoy trying different things, and feel sort of empowered without hair, because its just me, the real me (No hidding behind the hair anymore)
I still hate waking up looking like a boiled egg though, but its not forever.
I took the plunge and went to my hairdresser yesterday to get rid of the dead hair that was going to come out in the next few days anyway. Have had first FEC but liver funtion wasnt back to normal on tuesday so i couldnt get my second. Have to go back next Tuesday so fingers crossed. Has anyone else had this experience? So yesterday the hairdressers visit was the second dramatic encounter I had in the one week! I felt just as sorry for her as I did for myself. She is such an angel. I have my wig on now and having three young children I will probably wear it at all times. I have another one that was given to me as a gift so I'll probably wear it at night and keep my one for during the day. Hopefully as time goes on I'll be brave enough to try the scarves, etc.
Good luck to all you lovely, brave ladies. Hugs sent to all of you X
I also have a buff, find them useful to wear as a scarf anyway.
I have bought a couple of tie bandanas from http://www.bohemia-fashions.co.uk/ £4 each delivery 1-2 days
They have a good selection. I have bought one without an inner headband, which is nice and light for my walking (I tend to be a hot head), which with a contrasting headband to break up the edge over my forehead. I am not so keen on the flat look of a tight scarf.
I have also bought a couple which have an internal headband, but I am not so keen on those. I still have a little hair - just enough to poke out from under a hat.
I have bought a wig, which I use when I go out, starting to get used to it more now, but find it quite warm indoors. Mu mum has dementia, and is not aware that I am having treatment - I have seen her 4 -5 times in my wig and she doesn't seem to notice! Don't forget that most others will not think about looking for a wig. Be confident in your outlook, and you will get away with anything. Most people will think it is a change of hairstyle, if it is different to your own hair.
I have also knitted myself several hats, one is very light, tend to wear it round the house if the head is feeling chilly - otherwise I leave it close to the front door to avoid scaring the postman!
I have several patterns which can be used with chunky, or dk wools if anyone is interested PM me.
Evening pearlysox - the hair thing is the pits isn't it. I have my last chemo next week so my hair is well and truly gone ( still some wispy grey hair, not had it shaved. Was thick and still quite dark before this) My daughter bought me something called Buff headwear that I have found really good - you cn find these online.It is a lycra tube in lots of nice colours which you can wear in a number of ways. I have a wig that I got after my 2and session and although I do not feel totally comfortable with I am assured looks very natural by lots of friends and nurses. I sat opposite one lady and was sure she too had her own hair and it turned out it was a wig. She told me she also felt unsure about it. So to cut to the chase - get your wig, take your daughter to help you chose it and be brave - everyone else seems to be unaware it's a wig unless you tell them! My health authority pays for the wig entirely although others give about £50 toward them , hope your authority is generous. Good luck.
Love Marli x
Hi Lily hope you are feeling better. I have to say when my temp hit the magic 38 i waited about 3 hours checking my temp every half hour or so and it went down so i thought nothing more of it and carried on. Unfortunately the onc and the macmillan nurse weren't quite so forgiving when i mentioned it. At least i know for the future !!
I tried the cold cap for the first 2 treatments but it obviously hasn't worked and my hair is now so desperately thin i will have to take the step towards the wig. Have tried to find websites / shops that sell the headscarves / bandanas / etc but only found one. Does anybody have any details where i can them from please?
I am only really concerned about parents evening at my daughters school. Her friends know about my treatment but she specifically asked me NOT to tell the school. Any hints and tips to blend anonomously into the background? I have to tour round the school as she has to choose her options as well - so not quite just an ordinary parents evening.
Just one last thought - the lady i met when we were having our hickman lines put in has a wig. At our last session of chemo she arrived just as mine ended - we chatted and i thought - you lucky thing you haven't lost any hair. IT WAS THE WIG !!! She had lost all her hair and she was wearing the wig. I can honesty say she looked fantastic. Even when she told me - i didn't believe it.
Hi Lily - hope your feeling loads better. Thought I'd let you know re wigs - I start chemo this week - bought wig last week and like many others really worried it might look too wiggy. Have to say advisor was fab and matched up style and hair colour and made me feel really comfortable even made it fun - I wore the wig last eve when some friends came round for get-together and who I haven't seen for two months. Made my day when one of them said how nice my hair looked - had I been to the hairdressers that day? - that gave me a real lift and a bit of confidence, they were amazed when I told them it was a wig. Think I'll get my knitting needles out for Tuesday and look for an idea to make something. Take care.
Well done Lily...bring on that new hat!
Hope you are feeling a little better and getting in some rest now?
I am feeling sorry for myself today, feel rough ...but two more and that's it for me!
The bcc forum is like having loads of friends on hand 24/7. it is the first place i go when i am worried, and i always feel better when i have read some of the threads.
i have not done well at being positive this last 2 weeks, largely due to being in hospital. but am really going to try.
my husband is off work now helping with the kids, and he is doing a pretty good job.
have started a 'i am lucky because....' book, just writing down all the positives , it has helped
going to get the knitting neddles out and attempt a new hat
Hello Lily! and the other ladies of course!
So sorry to hear you're in hospital gain - poor you! Hope you're better soon. Very good advice not to soldier on thinking you can cope with a temp. I've got a bad cold but don't have a temperature just feel lousy. going to have an early night now.
lots of Love to everyone and get well soon Lily!
p.s I knit alot and find it helps get me through the worst of the chemo which has been y awful this 2nd dose
hi lily been wondering how u were. how cum ur back in with a temp is it like a cold tht does it or just run down do they put u on a drip n r u ok now. is ther anything u can do to build u up. hope uv managed to get sum help with th kids i dont think hospital stays were what u had in mind . take care rozita xxxx
hi been stuck in hospital again, bit poorly. need to start new hobby like knitting or soomething, bored of the tv, bored reading, carnt email properly on these tv screens.
i have been extremely stupid, had temperature for 4 days before went in, thought i could handle it, i have underestimated the chemo treatment, thought if i forget about it and cary on as normal eveerything will be ok.
so if in doubt get yourself checked out. not trying to scare anyone,, i am sure you are all far more sensible
hi there, wasdiagnosed end of Jan. Although they don't have all my test results back for staging they have decided that i need to be commenced on Chemo. Have chemo planning meeting on monday and looks likie i will be commencing on the 23rd. To cut long story short found lump december '08 had mamogram and biopsies came back all clear. had mamogram '09 again they said it was all clear. asked me if i wanted lump excised which i wanted and had done on the 18th Jan. 1 week later get called in and told i had breast cancer. So have joined this club that none of us want to be in but are here now. so i will be on here looking for advice and virtual hugs and i will aslo return the favour.
Went for ultrasound on bad boob and they found another lump so for extra pressie i have had a core biopsy today woo hoo also told that it might have spread to lymph nodes
love to u all
Brads wife aka Louise xxxxx
Hi Debs. I have a wig but I have never worn it. It took 3 weeks once I had lost my hair to get it so I wore bandana's and scarves.
Everyone I know knows that I have lost my hair so they are all quite used to it. I feel that mine looks too wiggy so feel uncomfrtable in it.
Everyone is different and if you want people to acknowledge you look ok, ask them what they think.
I do think it would have been better if they had mentioned it first as it would have boosted your self esteem a bit.
I am sure you look lovely.
Take care, love and hugs, Debbie. xx
I have made quite a big thing about my wig, i felt i had too for some reason, mainly because everyone knew my hair wss going to go and i wanted to acknowledge it i think.
I told people about my wigs and made a joke of doing the school run in two different wigs during the day etc...
Everyone has been really complimentary about my wig so far and that has made me feel better!
At first i was quite nervous about wearing it too...and avoided people like the plague. It is only during this last week or so that i have felt happy enough to go out there with the wig on and get on with life!
If they are good friends, they should acknowledge your new hair, oi am sure it is a lovely wig!
just thought Id ask how other peoples friends react to them with treatment and wigs etc.??? I went out with some friends and was quite nervous as first time wearing wig, and am quite up for talking about it but when they arrived they didnt say anything and talked as if nothing had happened -just ignored the whole thing- perhaps they think I dont want to talk about it or were waiting for me to say something but my wig is so obviuoulsy different it couldnt be they hadnt notioed. Then felt really awkward to start bringing it up as wondering it looks so wiggy they cant even say like the new hairstyle or something. Im hoping its just coz they dont know what to say but even something would be better than nothing very strange. I did say by the end I was dying to take it off and was itchy but didnt say anything else either. Felt very strange.
Anyway had my hair shaved off and got rid of the whole monk/ comb over thing. Felt alot better afterwards even if dont like the wig. I also couldnt stand the hair coming out all over the clothes & everywhere & in the shower.
Hope everyone OK xx
You may find the BCC booklet on chemotherapy useful to read as it explains how it works and has a section on side effects. If you would like to order a copy of this or to read it on line just follow this link:-
I hope you find this helpful.
Sam (BCC Facilitator)
Hi guys - I have had 2 FEC and am due the 3rd in a couple of weeks. I can only comment on what I have been through, and sure others will chip in.
The waiting for the first chemo was horrid - too much time to think and imagine all the ses. First one made me very sick. Had chemo at 2pm and was ill by 8pm. However, district nurses and onc reacted quickly and made sure I was ok that night. On the second round the meds were adjusted and I got away with just feeling sicky.
I have found my pattern seems to be 2 days feeling grotty, 5 days like morning sickness, and then fine until the next time. Which is ok by me!
A lot of threads on here give advice on how to cope - but the best one is to drink loads and loads to flush your system through.
Hair loss - nightmare, but it happens and you get on with it. Again, thinking about it happening was a lot worse than the event itself. Walking the dogs a good idea - fresh air helps a lot and stops the brooding....
Hi I'm also starting my first chemo in 2 weeks and would like to know what to expect (an honest account). How long does it take for the side effects to kick in? I'm also getting a hickman line inserted as I've got a severe needle phobia so any advice on this would be great too.
Hello I have just read your messgae on the site and wondered how you are doing on your chemo as I am starting mine in two weeks. I've read all about the side effects but would be really grateful to hear firdt hsnd how yours went if you don't mind. I do hope you have sorted out your childcare etc. I don't havr kids just two ageing dogs who are loving me being at home and are happy no to walk very much. I hope you are ok. I still cannot believe this has happened can you? I have gone from full time work looking quite good at 50 to a wreck both physically, my mastectomy scar is uncomfortable and sore, and mentally as I fear the worst. Does it get any easier?
Lucinda, I am also having my second dose of chemo tomorrow, waiting for this second one seems worse than the first - knowing whats to come. Onc has changed my meds so I hope the SEs will be better this time.
Lilythepink, sorry to hear you had such a bad time, good luck with social services - hope you get some help as soon as possible.
I have found a daily walk (even a short one when energy levels low)has helped me keep stress levels down, also
I live near Romsey where there is Jane Scarth House - it is part of the Wessex Cancer charity. They provide free complementary therapies - I have been able to join a meditation group and I have also arranged for a reflexology treatment a few days before my next treatment. I think Macmillans do something similar at Southampton and there may be other organisations elsewhere around the country who provide a similar service which may be of help - could they also help with social services Lily?
Anyway, best get the hoover out to clear up the hair around my desk - don't think I can blame the cat any longer!
Hello lilythepink and all you other lovely ladies!
So sorry to hear you've had an awful time with your second dose lily. Glad you're on the mend though. oh and I hope you manage to kick some arse with your social services and get some support asap!
I'm having my second dose of chemo tomorrow and I'm dreading it. I feel really quite well now apart from the spots, no hair and tiredness. It's like knowingly booking yourself for a bout of gastric flu with various other ailments added for good measure!
Off to have my prosthesis fitting now so catch you all later.
Hi Lily, sorry to hear second chemo didn't go well. My second FEC was the worst for me too.
Hope your next one goes a lot better.
Take care, love and hugs. Debbie. xx
I've put over a stone on while waiting for this bloody chemo! I did have a great time eating out with friends and drinking a ridiculous amount of wine though. Could have done with a bottle tonight but thought it better to steer clear for tonight at least! x
(sorry if this comes twice my computer is playing up so try again..)
OMG Cant believe you had to be in hospital with kidney infection lily, but glad that you are out now and hope you get better soon. I had a bad chest (everyone seems to have be coughing everywhere and also coughs & colds going round the nursery & my little boy kindly brings them all back home). It started a week after my first FEC but got antibiotics from GP and was OK (although got a parking ticket into the bargain as it all tookl over an hour!). I think someone told me about homestart which can help with the kids etc and the breast care nurses helped too with info if you dont get any joy. (Wish I lived nearer as Im a week behind you and felt OK that week!)
Hope you chemo goes OK tomorrow Jem. I had my second FEC today and waiting to see how it goes. Felling not too bad so trying to do what I can this afternoon. It seems that everyone has such different reactions and you just dont know how youll react. I heard of one lady who only had chemo days off and worked the whole time otherwise! Everyone is different so just see how it goes. The nurses were really good explaining it all and putting me at ease. Good luck everyone xx
The waiting is horrible, i was lucky i suppose as i had the distraction of christmas, before my chemo started.
Try keeping yourself busy, i was a manic before chemo started, filled the freezer, cleaned house top to bottom, tried to deal with all the paperwork, and got drunk alot. I sort of treat it like when i was pregnant(apart from the alcohol), some same side affects, but the bonus you dont have to give birth at the end of it all.
I think my arse is spreading from spending too much time sitting down at the moment, i have resorted to jeggings, as skinny jeans uncomfortable. I havent put weighted on, lost about 5-6lb, but there is a level of redistribution.
Sorry i am ranting on about something completely irrelevant
Again goodluck for tomorrow Jem
I know how you feel, and sleep deprevation is awful for the temper, just ask my teenage daughters. I have never read so many books in the early hours of the morning, even taken my dogs out at 3 am!!, quite a few people up and about that time amazingly.
Thanks Bizzy...i was feeling fine until about an hour ago, nerves and fear really kicking in now, i don't think i'll sleep a wink tonight
Good luck Jem31 with your chemo tomorrow not starting mine until the 22 Feb am getting more nervous by the day. Be thinking of you.
My first FEC tomorrow. Am starting to become completely terrified after reading about some of the side effects here 😞
Sorry the chemo is not going well for you, Keep on at social services, have a friend who informs me that they can help but they need a bloody boot up the arse as money is tight and they will try to put you off, so they dont have to spend.
Thinking of you. sending you big cyber hugs.
2nd chemo didnt go well surprisingly, 2 hours after my chemo temp went through the roof, ended up with kidney infection, it certainly isnt supposed to happen straight after chemo.
Got out of hospital on saturday, just finished the rest of antibiotics, but still not brill.
While i was in hospital, Very very strange, the ward i was on had CLEAN NURSES, and clean patients, and DIRTY NURSES and dirty patients, all to do with infection control. Anyway i was realiably informed i was a clean patient, but would become dirty it attended by dirty nurse......strange.
People are joking i dont look ill, what with the fake tan, fake hair, fake eyelashes, and a tonne of make up. Thank god for faking it, as i think people would throw things at me if they saw how frightening i look in the morning.
I have threatened social services if they dont get help for me with the children i am going to the papers.... keep you informed X
Been thinking of you today, hope everything went ok and the kids didnt play up. Big hugs.
Evening Lily - hope things went well today. Just read all your past posts and you are SO positive, hopefully this is just a blip. Let us know how you are doing when you feel up to it. Hugs to you and kids. Marli. x
Thinking of you and hope your chemo went as well as it can and you've managed to have some rest since you got home.
Hi all, this is a e-mail I received today, not that i´m really religous but I thought quite good so passing it on to all.
Concentrate on this Sentence
'To get something you never had, you have to do something you never did.' When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. Concentrate on this sentence... 'The will of God will never take you where the Grace of God will not protect you.' Something good will happen to you today; something that you have been waiting to hear.
Here´s hope to us all, I think we can all do with a little good news,
Luv Teresa xx
PS Good luck today Lily, Go kick ar--!!!
Goodluck for your treatment today, hope the SEs not as bad second time around. My children are grown up and are able to help me, but my heart goes out to all of you with young children. -
A hug is a handshake that comes from the heart,
A welcome embrace after time spent apart,
A sweet "Good to see you," or loving "Godspeed,"
Or perhaps just to comfort a friend who's in need.
For hugs have a meaning no handshake can hold:
To those you love best they are worth more than gold,
A warm, wordless gesture each human can share
That speaks your affection, and shows how you care.
A big hug to you all.