Breast Cancer Now Forum

Sandra and Joan - sorry you've had to go into hospital, hope you won't be kept in too long and that you feel better soon. Sending you both big cyber hugs. And Fiona too, sorry you're feeling down. You're usually so upbeat so hope that you feel better soon as well. Hug to you too. xxx ... View more

Oh my goodness, I just typed the longest post and its disappeared. Grrrr, grrrr and grrrr............!!!! That's the first time that's happened. Oh well this is going to very much shorter but here goes..... Tax hit me harder than FEC. I know I got off lightly with FEC - with this lot I struggled from days 5 to 8 with muscle ache/pain, stomach pain and upset, feeling bloated, jaw and neck pains, no sleep, strange taste, very sensitive teeth and feeling very tearful. Having said that, I only resorted to painkillers once because it was bearable. Think I can manage it another couple of times, but that's it ok?!!!! I just can't wait for it to finish. Emma - sorry you've been feeling bad and glad to hear you're on the mend now. Have a great holiday in France. We're going on Sunday to Nice. It's only a 2 hour flight but Ihave to wear flight socks! I am worried about possible germs on the plane, but both my son and daughter have colds at the moment so I'm more likely to catch something at home! Marion - love the wig. Sandra - good to hear you've been having some retail therapy, you deserve it. Thanks for the reassurance about surgery, I'm really apprehensive about it so it's reassuring to know it's not as bad as chemo. Chelle - good luck with TAX, it's definitely doable. Gussie - glad you had a good time at the concert. Cress - sorry you're missing work and your holiday in France. This time next year all will be so different. Sending you a big hug. Maxie - didn't see the Daybreak thing, but if I had to blame anything in my case it would be either taking Dianette for too many years, or being a worrier!! - about anything and everything and I did have a stressful year last year. Fiona - love reading your posts, you're always so chatty (and organised)! Jayney and Joan - I share your worries about having chemo first. I find it difficult to accept ladies being diagnosed now are still having their surgery before me. I just want rid of it. The lump doesn't worry me so much as that will be gone with surgery, but I obsess over my lymph nodes. My under arm does ache a lot - does that mean the chemo is working or isn't working? And what makes our cases different to the ladies who have their surgery first? Joan, I think you mentioned being on this thread for ages yet - well so will I be!! As you said, we'll be with each other every step of the way...... Finally, has anybody noticed their appetite increased? I get so, so hungry. Went to Pizza Express last night for son's birthday and ate vast amounts. In fact hubby said if they hadn't all had their own plates, I would have eaten everything on the table!!! Thanks for helping to keep me going Jewels, as always I love reading your posts. Sending hugs to anyone out there struggling at the moment xx ... View more

Thanks for the hug Joan, I know you're a day or two behind me so hope you have a lovely weekend with not too many TAX aches or pains. And also a good and relaxing weekend to all the other jewels too xxxx ... View more

Cress - sorry just noticed your earlier post and realised you're struggling today too. I totally agree about the fuzzy brain and yucky mouth! I'm just sitting here spaced out now keeping my fingers crossed the work I did today was okay as I really wasn't with it. I'm lucky to work as a secretary at the hospital I'm being treated at and they've been great, but this break has come at just the right time!! Hope you've felt a bit better as the day's gone on xx ... View more

Thanks for the info about TAX Cress, if the pain goes on that long I'll have to start something now. Like you say, maybe paracetamol first. When you ask about my injections, do you mean my stomach injections? I normally get a five day supply of GCSF which I start on day 5 to boost my immune system, but because I'm going on holiday they've given me a 7 day course. My onc told me right at the start of treatment to do the injections last thing at night so I wouldn't notice any bone pain. Yes I have noticed very mild aches from it, but this aching I've had today is much much stronger and I haven't even started the GCSF yet, that starts tonight! It's really helpful to know how long this could last though X ... View more

Hi all, day 5 after first TAX and I ache all over. Haven't taken anything for it yet (got some co-codamol) - does anyone know how long the aches and pains could go on for? Just had last day at work for two and a half weeks now, just as well as don't think I could go on any more! Will try the co-codamol soon but was hanging on as hubby has had these and found side effects quite strong strangely I feel relieved to be finally getting some side effects apart from the hair loss as hopefully it means its working!! Hope everyone else doing okay today x ... View more

Good to hear all the jewels got back safe and sound today. Good luck tomorrow to NicJ, Fi, Katherine and Fiona xxxx ... View more

Hi all, one day after having first TAX I'm still fine with no side effects. I'm still taking the steroids, but no painkillers. Emma - I never had Emend for sickness, but had Ondansetron and never had any sickness....maybe worth a go as the Emend seems to make you feel worse. Hope you feel better soon xx I'm worried about my eyelashes! They're definitely thinning despite putting Rapidlash on every night. I'm hoping that a few last though right to the end. Eyebrows thinning too, but easy to draw in. I agree losing lashes seems worse than losing your hair, it's easy enough to pull on a wig but trying to put on false lashes....nightmare!! Good luck to Vicki, Cress, Caroline, Joan and Titus at the bar tomorrow, hope all goes well for you all. xxxx ... View more

Hi all Back from the bar safe and sound (Cycle 4 - TAX) and no effects yet. Was disappointed to have a reduced dose again (25% less) for the second time as liver still not coping, hope it's better for the last two cycles because I'm worried I'm not getting the full monty. Lots of jewels have obviously had really good weekends. I went to a jazz festival on Saturday afternoon with a friend and then to my neice's 18th birthday party in the evening and had a wonderful time. Then on Sunday me and the hubby grabbed a sandwich and sat on the clifftop overlooking the beach which was lovely even though it wasn't sunny, didn't put people off from going in the sea though! Emma - sorry to hear Emend not working and hope the sickness is easing now. Jill - sorry you were messed around today. They struggled to find a vein on me as well and although I've only got two more to go I'm seriously tempted to get a picc line. I don't know the difference between a hickman and a picc line. Finding a vein is definitely the worst part of chemo for me. Ann - sorry you've been having a tough time and hope you're feeling better now. Joan - Hope you have a good day at Chessington. I know what you mean about BC never being far from your mind. It doesn't matter what I'm doing or how much fun I'm having, it's never far from my thoughts. Fiona - you sound as busy as ever! Good idea to squash it all in before Thursday. Jackie - lol toe moustaches!! Gus - I'm having a lumpectomy (is that a WLE) too. Hilarious about the Asda order, made me laugh Vicki - That's a pain having to do a daily 50 mile round trip, but so worth it, it's a no brainer in the long run. Don't know much about rads - am thinking it's probably the most doable part of everything we're going through. Debs - yes definitely going more often!! Chelle - when you're next doing the list, my next visit to the bar is 27th Aug due to the bank holiday. Anyway, great news - I've managed to change the dates of my holiday to France. Was due to go on Sunday but got really worried about being abroad at the lowest point in the cycle. Luckily I've managed to change to week later to go on my good week - amazing as flights and hotel were originally booked on a non-change non-refundable basis. I've been so worried, but now I can really look forward to it. I've also been given every SE med going just in case plus a longer course of stomach injections so hopefully I'll be fighting fit! Thanks all for your continuous positive messages and good luck tomorrow to Sandra, Debs, Flippantfox and Gus xxxx ... View more

Hi Joan I was wondering how you got on today and am so sorry to hear you've found yourself in the same situation. The reassurance my team gave me was that the chemo IS working because the tumour hasn't grown, it has shrunk by 1mm (but that's not much on 24mm), the 8mm node under my arm has shrunk a little and also another node that contained micromets is now completely normal. Although I still feel it hasn't worked on the tumour, it is mopping up the micro nasties everywhere else so that has to be good news. I'm sure that's the case for you too. Like you, I was very down the day I found out but am more relaxed about it now. We're only halfway through our treatment so still a long way to go yet and plenty of time for the Tax to work its wonders. I'm actually looking forward to starting the Tax as I've got it in my head it's stronger stuff. Also on this website I'm sure I've read some positive stories of ladies whose tumour didn't appear to have shrunk, but found out at surgery that it had changed in consistency and was just fibrous tissue so please don't give up hope. Thinking of you and sending you big cyber hugs xx Also thanks to all you lovely jewels who advised me on the holiday. I've been busy trying to get travel insurance today and no-one wants to know not even Eurotunnel. I did speak to an excellent advisor at Insure Cancer (I think), who would have insured me if I was travelling a week later but the problem is that I'm away when my bloods are at their very lowest so they wouldn't do it. I'm now trying to change my holiday to a week later. Cress hope you have a brilliant break in Norfolk. Thanks also about the advice re tumour grade, I still would like to know lol and will try again to find out again at my pre-chemo tomorrow. I ask them every time!! Hope those ladies who had cocktails today are doing well and wish everyone else a pleasant (but not too warm) evening.....xx ... View more

Hello fellow jewels Just a short post, soooo tired this evening, the effects of chemo definitely catching up! Just wanted to ask the other neo-adjuvant ladies....how do you know the grade of your tumour? I've asked a few times now but keep being told they won't know until after surgery. I'm getting quite obsessed with wanting to know the grade as it will put it into some perspective. I asked my BN if it was low grade and she said quite likely, but then another doctor said that was unlikely and that in someone of my age (44) it's normally always aggressive. Got pre-chemo on Friday so will ask again but just wondered are there any other neo-adjuvant ladies who don't know their grade? Also, been reading back through some of the jewels earlier posts and realised that so many of you have sadly had to cancel your summer holidays. I'm very stressed about ours which I haven't cancelled yet. Bascially I'm having my first dose of Tax on Monday 5th and then we go abroad on Sunday 11th for a week - am I being silly and reckless?!! We're going to Nice so there will be hospitals on the door step but I don't know how I'm going to react on the Tax (I've been fine on FEC). One doctor was very positive about me going and said the treatment could be tailored, but another doctor said that if I don't get myself to hospital immeidately if I feel unwell I could die within four hours which really shocked me, I just don't know what to do. I didn't take out travel insurance when we booked so we'll end up losing all our money, and then I might be absolutely fine and could have gone.....what should I do? Just feel so bad about it as really want hubby and the kids to have a break this year more than ever. Jackie - sorry you had trouble with the C part going into your vein. I too had problems with my liver and couldn't have the C at all on the third cycle which I found very upsetting so it was good you managed to have it even if it was with some difficulty. Love the cupcakes by the way, they're fab! Sorry, can't comment on anyone else's posts tonight as my eyes are closing now, but just to say I love reading them everyday and they've made me smile and laugh so many times. Hope everyone gets a good night's sleep, night night...........xx ... View more

Sorry I meant Happy Birthday Joan!! (Getting confused with Fimbo!) Excuse my chemo brain xx ... View more

Hi guys, just wanted to say thanks a lot for all your support earlier in the week when I was ready to give up on the chemo as I thought is wasn't working. I've now seen my team (who are brilliant!) and they've reassured me the chemo IS working and the plan is to stick with it. Also... Happy Birthday Fiona! Hope you're having a lovely day. Let us know how you get on with your results on Thursday. Emma you look lovely, liking the new picture. Trish, really sorry to hear what an awful time you're having and I wish you all the best. BTW, did the look good workshop this week and it was brilliant. If you get a chance to go on it, now matter how far into your treatment, it's so worth doing. Have a good weekend Jewels xx ... View more

Hi all, it's been a week or so since I posted but been reading your posts and hope everyone is doing as best they possibly can be. Chelle - sorry to hear about all the problems you've been having, its good you've able to have a some fun times too with the concert and the look good workshop (got mine today, really looking forward to it). You sound such a strong person. Good luck at the bar today. By the way my lashes and brows still fine too but I'm plastering them with rapid lash every night because I've heard they're the last thing to come out and can take ages to grow back. Sandra thanks for mentioning my situation to your onc about the C part of the FEC being missed - I had a feeling the C part was a potent one but my BN has reassured me that the E is a wonder drug too and just missing C this once will have no affect on the overall treatment. Jmeg sorry to hear your problems in hospital, hope you're feeling better now. Benedictus thanks for the reassurance about tax and Cress and Katherine sorry to hear you've had such a bad time on it and hope you're feeling better too. I'm due to start tax six days before going abroad and I'm really worried. I had no SE with Fec but the tax sounds scary. Joan I agree totally with not wanting to feel alone in this. We wouldn't wish it on anyone, but also it is comforting to know that someone else out there knows exactly how you're feeling. Have you had your MRI yet? Caroline it is totally understandable to be upset at the hair loss. I feel shallow too but I just can't wait for it to grow back even though my wigs look nicer than my own hair! My week has been the usual rollercoaster. I feel I'm turning into a cancer bore. I'm fed up having to wear the wigs in this heat. I'm fed up having to do my stomach injections. Then to top it all off I went for my xrays to check the lump is shrinking only to find out the chemo hasn't made any difference, the lump has not shrunk at all. I felt so angry and upset, my initial reaction was to just stop the chemo and just have surgery, I just want rid of it. They're discussing my case at the MDT tomorrow and I'm seeing them straight after when they'll let me know the best way forward. I feel that chemo hasn't done anything and I lost my hair for nothing. Has anyone else experienced this? Oh well, got my look good workshop this afternoon so that's something to look forward to! xx ... View more

Hi all thanks so much for your support after having a bad day yesterday. Jayne and Jill - hope you're feeling well after yesterday. NijJ - sorry you've had such a bad time lately. Faye - you just made me laugh with your comment you'll be requesting a refund on the wig from China! Chelle - Thanks for your support and for adding me to the huge list of Jewels! You're doing a great job. I'm speaking to my BCN today and hopefully she'll be able to advise why the chemo was changed. Thanks also too to Emma and Artemis for your support. Joan - Thanks for the virtual hug, I needed it! Sorry you've been having trouble with your picc line, hope things are settling down now - you seem very positive. It's good to talk with someone who understands how tough neo-adjuvant is, not so much physically but mentally. I too just want rid of it. I can't even bear to touch the area so I'm not sure if it's shrinking. Can I ask do you know yours is shrinking? I wasn't sure if you've already had confirmation? I won't know until my mammo/ultrasound next week (half way point) to check if the chemo is working and the waiting is a nightmare. If it's not then they'll change the chemo. From your point of view, it does seem strange to have AC when everyone else seems to be having FEC, but I agree what choice do we have? We have to trust their decisions and they must have good reasons even when it's not clear to us! Jayney - I totally understand how you're feeling, you're not alone. The thought crosses my mind too how long the road ahead is, but a good friend gave me this advice - try not to think of the big picture. If you can, try and break it down into smaller pieces and just focus on the next week/treatment, not all the months ahead. This can make it a bit more manageable, although obviously it's not always possible and I do have thoughts like you did yesterday. Really hope you're feeling better today though. Sending you a cyber hug. I'm feeling fine this morning and keeping well stocked up with anti-sickness meds. Grade 1 fuzzy felt hair is really coming out now! Had to go to A&E last night (a big bruise came up at the injection site and there were concerns about leakage but luckily it's just bruising), anyway it was the first time I'd been out in public with no hat or wig. I was so tired and emotional I just didn't care, but it was okay. Might go au naturel more often now! Finally good luck to all the Jewels at the bar today, hope all goes well. xx ... View more

Had my third cycle of chemo today and I'm really upset. Can anyone help? I'm having FEC but was only told today that I wouldn't be having the "C" part as my liver is not coping. I just cried. I keep thinking I have this tumour inside me and I need all the drugs I can get to tackle it and now I can't even have them all. The nurse was lovely and tried to reassure me that there's still a long way to go and that they're protecting my liver, but I just want to know that the chemo is actually working because right now I feel like I've got a ticking timebomb inside me. I missed seeing my usual onc at pre-chemo last week and wasn't prescribed all the drugs I need either and had to ask for them today. I feel so low and tearful. Has anybody else experienced this /or is just having FE without the C? I really hope it went well for all the other ladies having chemo today. ... View more

I had this too rather than a lump. The skins just feels a bit more springy and firm to the touch, I also noticed a very slight indentation too. Unfortunately I ignored it for ages because it wasn't a lump. ... View more

Hi all thanks so much for your welcome messages and it's really to good to hear from the other ladies having chemo before surgery. I too have been wondering whether the chemo is working because I'm not having any side effects apart from being a bit bald (my head feels like fuzzy felt too!) Had pre-chemo appt today and got the results of my CT which confirmed no spread! The first bit of good news I've had! I was so happy and emotional about that bit of news that I completely forgot to ask any other questions today like is my lump actually shrinking? My third chemo is Monday and I can't believe that means hopefully I'm halfway through chemo already! Hope you're all enjoying the fab weather and have a great weekend. xx ... View more