Breast Cancer Now Forum

LittleChick you must have posted while I was typing out my message .... so pleased all is ok with the liver scan and also that they are pulling out the stops. We'd all rather you didn't have to have the surgery, but so pleased you don't have to wait ages. GOOD LUCK for Thursday. Post again as soon as you are able to after surgery and let us all know how you are doing. It will all go well, I am sure. Take care - thinking of you lots. Lots of love, margieteexxx ... View more

Hello bunnies It really is quiet in the warren, but as others have said hopefully this is due to the good weather and that we're all sunning ourselves. LittleChick I've been wondering all day how you have been getting on. You are in all of our thoughts. Let us know how you've got on. Natalie, what did your chemo nurse say about the cystitis? I'm sure I've read somewhere that it is a recognised possible SE. There are so many possible SEs that I reckon anything can be put down to the effects of the chemo!! Hope it's getting sorted out. Vanns, hope your granddad continues to improve. There's been lots of talk about red wee - mine is only ever red for the first time of going then turns straw coloured. I guess we all metabolise differently. Sara, I've been in stitches with your cat stories. We had two cats for many years, one died aged 18 and the other aged 19. The one that died aged 18 was a squirreller - he was a dab hand at catching them. He used to eat the whole lot apart from the tail and had a 'trophy cupboard' at the back of our garden that we discovered one day when gardening - a line up of about 20 tails. Sometimes be brought them into the house which was truly yukky. I'd be sitting relaxing after work and go to put a mug down on a glass top table and spot a tail through the glass, under the table! He was amazingly skilled at catching them. The other used to catch mice and most mornings there was a mouse stomach on the back door mat for me to get rid of. Mega yuk! Sometimes a head as well but never anything else. Bizarre. Every day I used to ask myself why I loved them both so much, but I did. The mouser was female and had a litter of kittens. She brought mice into the house when the kittens were only a few weeks old and would try and teach them how to catch the mice, chasing them up and down the room - until I got rid of them. The mice that is!! Natalie, Coventry sounds good to me as a possible meeting place, but like you I'm happy to hear what other people suggest. Well, I'm off for my blood test in the morning and see if my white cell count has come up after being too low for chemo last week. Assuming it's back up I'll be getting FEC3 on Wednesday. It's amazing the difference the few extra days between blasts of sparkly stuff have made to how I feel. I feel so much better than I have for weeks. It's horrid to know how I will be feeling in a couple of days time but at least this little respite has made me realise that when chemo is finished it won't take long to start to feel 'normal' again. And then the rads will start ..... but I don't think they will be anything like as bad as the chemo. I'm still obsessing about having the cannula inserted again - my hand still isn't right after FEC2 (the revenge) - but I have been prescribed some Emla cream to anaesthetise the hand before the cannula goes in this time. Thinking of everyone at whatever stage in their cycle they are at. Together we are getting through it. Love to everyone. Sorry not to have responded to many of the things that have been raised by other bunnies. Love, margieteexx ... View more

Well done LittleChick for finding the silver lining. We are all with you and rooting for you. Don't you dare even contemplate leaving our warren. You are one of the bunnies through and through and you must stay with us. How awful that the hospital 'lost' you for 7 weeks, but you are well and truly on their radar now and they'd better be pulling out all the stops for you. Good luck on Monday and let us know how it goes. Keep listening to the birds singing and keep hold of silver linings. Love, margieteexx ... View more

Warning to all bunnies - if you are in the middle of a post, don't scroll back to the previous page to see what other people have said because you lose what you have already typed. Just happened to me and I had typed a lot from the heart .... start again ..... Main thing I was saying is how dreadfully sorry and concerned I feel for you Little Chick. Keep us all posted on how everything goes. Amazingly you sound really quite positive at the end of your post - that's great as it will help you through - that and the support of your husband who sounds a gem. I can't believe how our husbands cope with our ever changing situations and emotions. What I'm saying now doesn't sound anything like what I said in my lost post, but Little Chick I just want you to know how much we are all with you, supporting you, sending love, hugs and everything. Your situation has put things into perspective for me and I am feeling much more positive today about my week's delay and low white blood cells (thanks everyone for words of support on this - my week's delay seems such a small thing in comparison to some other people's situations, health, financial worries, stress, fertility issues ....I'm so fortunate that all I have is a little dip in my white cells .... The main reason I was so devastated yesterday is that my delay means my husband and I wont now be able to go down to London for the Queen's Jubilee Pageant - one of our sons had got us special security passes to be on one of the bridges, thanks to his work. My hubby had booked us into a 'special' hotel - don't know which one but I suspect it was the Savoy - luckily he booked with a cancellation option but he's not cancelling until we know for sure that my chemo is going ahead next week. Sounds pathetic that this devastated me so much in view of everything else going on. Nevertheless, I shall demand champagne as I sit and watch it all on TV and look out for my son on the top of a bridge! I am so intrigued by the different add-on medications we all get or don't get - an additional intrigue now to the question of why we get different chemo regimes. I asked the chemo nurse yesterday about immune system boosters. The policy here is that if you have two consecutive low white blood cell counts they consider giving you boosters for the rest of the treatment - so that's me now. The nurse said he would be discussing me today with the onc. But which booster I get remains to be seen - some people seem to have one jab the day after chemo each cycle. Others seem to have 2 jabs during the cycle. Here I'm told it is 5 days of injections mid cycle - which can be done by the district nurse, self administered or my hubby can do it ..... mmmmm. I'll let you know. I am thinking of both Saras being zapped today and Elaine tomorrow - anyone else in the mix this week? I've lost track. Thinking of everyone in fact and sending virtual hugs to all. Wonder how Pixie is getting on on the IoW with her hats! Interesting talk about make-up. I've not worn any since chemo started because my eyes water all the time and are sore. I have my LGFB workshop next month and look forard to hearing what they recommend. My onc has prescribed some eye drops which I'll get with my other sweets and treats after my next chemo. Love to everyone. Keep smiling and enjoy the sun! Love, margieteexx PS to Natalie - did my PM get through to you? In case it didn't I'm in the East Midlands, north of Leicester and close to the M1. ... View more

Wowee. What a super crowd inhabits our warren. I am bowled over by the amazing stories coming out from so many fellow bunnies. I shan't comment on any specific ones because to do so would be wrong as I would be bound to accidentally overlook someone - totally accidentally. I can't wait for us all to meet up because I think there is a lot of common ground and many shared goals etc between us. So many are in, or have been in, high powered or highly significant jobs - but no matter what job anyone has been in, every single bunny brings a wealth of support and tips for helping us all get through this. I really feel for those who are experiencing financial difficulties - bc (yes, I'm going lower case too from now on) is bad enough without having financial problems to deal with too. Isn't it interesting how the atmosphere in the warren changes as the weeks go by? All the flippancy of wig talk and chemo bag talk of the first weeks has gone and we are all deep into chemo now and it seems to have , bringing with it a much more reflective state. Not surprising at all. Chemo is an absolute b****r and very hard going, but we are all working our way through it. Tomorrow, as long as my blood count is OK, I reach the half way stage - it will be 3 down and 3 to go. By the time the SEs have started to subside from this dose I will truly be at the half way stage between first and last dosing. What an achievement. I spoke about the problems with my hand yesterday to the chemo nurse as I was in the chemo suite for my complimentary complementary therapy (wonderful). 3 weeks on it is still very tender and more bruising has started to come out over the last few days. I am still convinced the nurse who administered the sparkly carrot juice last time had a very poor technique and has caused this on-going trauma to the hand, but the chemo nurse is not worried by the way it is looking. She explained the effects the drugs have on the lining of the veins and the surrounding tissue and said to gently stretch the hand and in doing so stretch the veins - just what DJ007 said when she popped in from April 2011 (thanks). Like spacehopper I was afraid stretching would cause more harm than good, but it seems the opposite is the case. S**T. Excuse me for swearing. I know we're not supposed to on the forum. I have just had the dreaded call. My white blood count is too low for chemo this week. Over and out for now. margieteex ... View more

Natalie, I've done a PM but it's not showing up in my messages ... let me know if it doesn't get through. Lacuna - don't worry if you feel you only post when you are low. The important thing is that posting is a helpful process and if it's when you are down that you need it then that's fine. Re blood counts, from what I've read Tax hits the white cells more than FEC so that's probably why you'll be getting a booster when you move to Tax. I did some googling yesterday and it seems Tax is a more effective albeit more expensive drug than FEC but it also has the additional cost of people often requiring more medical help with the white cell count. However FEC is still regarded as being an excellent drug regime for BC and so the FEC-T mix provides a very good combo that is both clinically effective and cost effective, hence it is favoured by many oncs. Hope this makes sense! Not expressed very well. I'll be moving from FEC to Tax after wednesday's blasting. I'm thinking of it as being half way there and therefore a positive moment in the treatment. It's the 'top of the hill' and we can start freewheeling through the last 3 doses. Let's hope anyway!!! Love, margieteexx ... View more

Hi bunnies I'm sitting here chuckling away to myself: thank you Pixie for lightening the day. Your hats sound .... er .... well .... yes, I have to say it, they sound wonderful because they have both been knitted with love and caring. Now whether or not you actually wear either of them remains to be seen ......... let us know!!!!!!!!! Good on you for the course you are doing. I don't think my brain is up to new studying, but I really admire you for it. I'm up for FEC3 on Wednesday, as long as my bloods are ok tomorrow - last time they were low on the monday (usual day for testing here) so they tested again on the tuesday. This time they have said to leave it till tuesday so keep everything crossed for me. I feel so deeply for those who have delays. It's not what any of us wants. No routine neulasta here. My hand is still giving me a problem - it's very tender down the veins down from my little finger and ring finger. I cringed when I read Gaynor's post about the number of attempts to get the cannula in. Poor bunny. As always there are so many posts I wanted to comment on but without now scrolling back through the last few days I can't recall which ones. My brain seems to have jellyfied!! I SOOOOO wish I could post from my HTC as I used to be able to before the forum update. It allowed much more sponteneity. Hopefully it'll come back. The ability to post on my mobile that is, as well as the brain's ability to think .... Re wigs - having said all along that I wouldn't be wearing mine that often I find now that it's the easiest thing to put on when I'm going out. It's easy to wear, looks realistic and means I don't stand out like a sore thumb - I can blend with everyone else which I reckon is all I want to do right now - look normal, like everyone else. On my rare sorties to the gym I'm either wearing a scarf or a cap and around the house I'm going commando (sorry postman!) We're all so different and it's about doing what feels right for each of us as an individual. Looking forward very much to meeting up. Natalie I'll send a pm with my locality. Look out for it. I'll see if I can do it now. Pixie - have a great holiday. I really hope you can relax. Good luck to this week's bunnies - me included!!!! Love, margieteexx ... View more

Hi bunnies Our warren is a bit of a sickly place right now and I am so sorry for everyone suffering. I can't wait till we are all at a much better place in our journey, ie beyond the reach of the chemo cat. It'll come. Pixie and little chick I am so, so sorry for you both that you have been delayed this time round. As chrisp says, we plan so much around knowing when our due dates are that it is a real bummer when the schedule gets knocked for six. When I had my bloods for fec2 my white count was too low for treatment but as that was on the Monday and my feccing was Wednesday I was able to go back for a second blood test on the Tuesday and the count had come back up overnight. I know how fed up I was when there was the chance it was going to be delayed so I really really sympathise. Elaine good luck on Monday. I have my bunny ears crossed that the antibiotics will have done their business and you can go ahead next week. It is so horrid for those having to put up with all sorts of other things while undergoing chemo. Virtual hugs to everyone. I had my onc appt yesterday. I'm pleased to say all is fine. I feel so fortunate. Let's hope it stays that way. I got the results from my CT scan - all clear. Phew. Discussed the cannula probs that I had last time and everyone is in agreement that I don't have to have that same nurse again, thankfully. Also I have got some Emla cream which anaesthetises the area where the cannula will go so the thought of that makes me feel better in the build up to next feccing. I feel such a wimp being scared of the cannula, but after the probs I had last time I don't suppose it is surprising I feel this way. Onc has also prescribed drops for the watery eyes and some anti stomach acid stuff. I desperately hope my next fec is on time because we have high security passes to be on Waterloo bridge on June 3 when the queen's jubilee flotilla takes to the Thames..... Other things .... Body hair - I'm not a very hairy person normally so am pleased to report that my leg and underarm hair has gone! LG hair - I have the best bikini line of my adult life. Shame I can't use the pool at the moment!!! Pixie good on your son and his friends doing the pink thing and raising funds for bcc. My dil is running the race for life in my name and I am so touched by the message she's put on her just giving page about me and the messages now coming in from her sponsors. As lots of us are saying, it takes something like having cancer to make you realise how much people love you and are gunning for you. It is very humbling. Love to all the bunnies and huge hugs too. Good luck everyone with chemo cat zapping and with SEs. Pix I hope you get away on your hol. You need and deserve it. Love, margieteexx ... View more

Oh little chick. I am so sorry if you are delayed by a week. I think it's something we all dread happening because you get so psyched up for each treatment that when the day comes you just want it done with. Poor you. Big cuddles from your lovely oh definitely called for. Thinking today also of pixie, vanns and south pool. Holding hands even tho I'm not in the big chair today. Off to see my onc this afternoon. What a social whirl ha ha! Will discuss hand problem .... I'll report back later. Try and keep your bunny ears up little chick. Love margieteexx ... View more

Oops, now re read all the way through and there a lots of other typos ... Sorry!!!!! Hope you get the gist. Margieteexx ... View more

Must have mistyped 'last' as it came out as 'salt'!!!! Should retread before sending, not after!!!! ... View more

Hi everyone Hyzenthlay I love your limerick but I am SO CROSS (only joking) because I was already well on the way to a limerick using pixie and myxi!!!! I was stuck on the last line - still am but will give mine a whirl with the current last line .... There once was a bunny called pixie Who cared for her friends who had myxi She made them all laugh Even when they wanted to barf And led them to a spa o'er in Dixie I'm still working on the salt line - tricksy was a good choice of word to rhyme with myxi and pixie. Hope everyone is ok today. I'm thinking of those moving on with sparkly stuff this week and not looking forward to mine next week. I had a wonderful afternoon yesterday. My hospital set up offers complementary therapies to people having chemo so I was booked in. After an hour long consultation to get my medical history down, the therapist put her notepad to one side and asked me how I am in it all. Don't know if she had sensed that my upbeat exterior was not truly indicative of how I am feeling inside and of course as soon as she asked me I began to barf. It then all came out about the hand/paw and how unhappy I had been with the nurse who did my last feccing few and her poor technique. The therapist said I must talk it through with my onc and also let the key team of nurses know. She said it is my right to refuse to have that nurse doing my chemo and also said she would have a quiet word with the main nurses on my behalf. You can imagine how all this helped. We then went on to the therapy. She recommended reflexology with a bit of reiki to start with. Wow. I was an hour on the couch and felt fantastically relaxed afterwards and lots more at I can't find the words to describe. Last night I slept more soundly than I have for years. Brilliant. I am seeing her again next Monday and apparently can keep seeing her through tour chemo and rads - until she feels I am ready to be signposted on elsewhere. What a wonderful service. I see my onc tomorrow, bloods next Tuesday, fec on wed. Yesterday morning I felt myself for the first time properly since my last fec and I'm going to make the most of this week. I think we are beginning to understand our own cycles now a bit better, but all know things can change especially with the change from fec to tax or whatever else any of us is on. Pixie, interesting your chemo nurse didn't mention tax when you were asking about different regimes yesterday. I'm horribly bruised from the cannula from my ct scan, both where it wouldn't go in and whereit did go in. I look as if I've been in a bit of a fight. I think the chemo is affecting my body's bruise-ability. Will discuss tomorrow. As always I had planned to respond to some of the specific comments on other people's posts but can't now recall exactly what .... Oh except to say to little chick that I liked being called a perky person!!!! I try!!!!! Lots of love to all bunnies and keep smiling whenever possible. Margieteexx ... View more

Hi Pixie Just checked out which hormone therapy I'll be on - as you say, it will be an aromatase inhibitor, but the one I've been earmarked for is Arimidex which is an anastrozole. Heavens, the knowledge we are all picking up in such a short time is unbelievable. Just such a pig there's a need to find out .... next step is to find out what the difference is between anastrozole and letrozole!!!! Both I gather have basically the same chemical structure - just found a clinical research paper on the comparison and the abstract concludes with the suggestion that lestrozole may be slightly moe effective than anastrozole. When the time comes, I'll ask my medical team. Didn't mention in previous posting that my tumour was stage 1, grade 2. love, margieteexx ... View more

Hi Pixie Sarah12's comment of 'node positive early BC' probably sums my BC up. I'm on FEC-T (3 of each). Found my own lump in December, had biopsy and dx in January, lumpectomy to remove 10mm tumour in Feb and 4 nodes removed. One had trace of cancer cells. Surgeon said historically they would have gone on to do lymph clearance but there was no point as chemo would clear any cancer cells and clearance would be an unnecesary step. Oh and I was ER+/HERneg. My onc used various computer programmes to determine my risk factors of developing further cancers and said the chemo would give me the best chance of non-recurrence over 10 years. My FEC-T is therefore adjuvant, not neo-adjuvant. After the six blasts of chemo I have 25 session of radiography to look forward to (why some people have 15, some 20, some 25 or more is another mystery). Rads will be followed by 5 years of hormone therapy - not tamoxifen because I am post menopausal (63), but another drug. Can't recall the name right now. I hope you get lots more postings on this subject as it's a very interesting exercise. Love, margieteexx ... View more

Hello bunnies I've been a bit quiet for the last few days - reading posts on my mobile as they come in but not posting because I have to get the laptop out to do that. I do hope we can start writing postings on mobiles again soon, when everything can be so much more spontaneous. Where do I start - first by welcoming our new bunnies. I'll get my situation off my chest first if you don't mind, then I'll do more chatty stuff. After my really horrible experience with the cannula on my FEC2 I have truly become cannula phobic. My hand (aka bunny paw) is still bruised and tender and I'm now on day 12. I am really angry about the way the nurse delivered the drugs. She was careless and heavy handed and I'm still suffering as a result. I am going to complain vociferously to the onc when I have my appt on Wednesday and say that I will refuse treatment from that particular nurse if she ever comes near me again. Not sure how this will go down, but I have to give it a try. Anyway, I knew I had another cannula experience coming up last Friday when I had my CT scan. Building up to it, I felt really sick with scaredness and barely slept on Thursday night, then I cried my way through the insertion on Friday - the nurse said she needed to avoid the back of my hand because of the bruising so she tried in the crook of my arm - got it in and it popped straight out. She then managed to get it in to a vein on my wrist, up from the thumb. What a relief when it was done and I slept like a baby on Friday night (might have been more to do with the wine that evening though!) The scan itself was OK - hope to get the results on Wednesday. Other than that, I'm still really lacking in energy but sort of OK. Onwards to nicer thoughts. The idea of a spa outing is brilliant and I'm definitely up for it, anywhere from London area up as far north as, say, Leeds/York area, or into Oxfordshire, Bucks, Berks, Herts, Essex, Hampshire, Surrey .... the only thing is that September would definitely be too soon for me as I'll be starting 5 weeks of rads in Sept and anything in a pool is forbidden during rads. That'll bring me to late October. Pixie, I totally agree that we should do this when everyone that wants to take part can do so and actually rather like the idea of doing it in April when we'll all be able to celebrate getting through a year of all this. But if it's sooner, I'm still up for it. Wigs - Talullah's wolf whistle - brilliant (also pom-poms, berets etc!!!!) I've named my wig Minnie (mini-me) and, having said I didn't envisage wearing her often I finally plucked up the courage and wore her on Friday when OH and I went for a pub lunch after the cannula trauma. Felt great to blend in and not stand out like a chemo victim in a headscarf, felt like myself, and now reckon I am going to wear her most of the time. Honestly, those who are still hanging on to their hair by a thread you will feel better once you've taken the plunge and got rid of what's left. Like someone else - was it Vanns? - I have never been that bothered about my hair - yes, I like to have it well cut and highlighted, but I didn't think it would bother me too much when I lost it, but when it came to the crunch I was beside myself with upset as it fell to the floor. It took a while to come to terms with the baldness, but it was so much better than worrying about soreness, itchiness, bald patches etc and now I can't imagine not having done it. Strangely I keep running my fingers through my non-existent hair! Different regimes - yes, it's really weird the different regimes our Oncs dream up for us. As far as FEC being only for ladies with existing tumours (Repunzal's post) - my tumour was removed yet I'm having FEC and as far as Tax only being neo-adjuvant (Pixie's post), I'm having that as adjuvant, not neo. It seems to be fairly arbitrary according to the individual onc. Pixie, I'll post on your different regimes thread so you have all your info together. It'll b interesting to see what conclusions you can draw, if any. Teeth - I had been thinking my lower left molars had moved apart before seeing pixie's post about teeth so I gues that yes, the chemo has affected my teeth. What's more a chunk of tooth fell off a well-filled upper molar on Friday. No chance of having that hole filled for a couple of months - and I've always been so careful of my teeth, never letting anything go unchecked. I had so many other things to say but can't hold information in my brain any more so I'll just send love to all the bunnies and good luck to those being done over with sparkly carrot juice this week. Love, margieteexx ... View more

Hi everyone I love the way when some of us are down others are on a better part of their cycle. It is a constant reminder that no matter how low we might feel at any one time, there's always a better time on the horizon. Pixie, thanks for your comment about the changing seas. It sums up very eloquently what I have just clumsily said - and I'm pleased to report that the tides did change for me last night and I am slowly climbing my way back up. Like sarabee, yesterday I was so low I felt I wouldn't get through any more cycles. Last night I felt as if a veil was lifting from over me. This morning I forced myself out of the house and up to the gym where I actually managed to do a bit of zumba. Not very energetically but it certainly acted as a brilliant tonic. Elaine, you're a day behind me so hopefully you'll be on the up again very soon. It's so hard, isn't it, but we will all cope. Pixie, don't know if everyone is the same but I have been told hormone therapy will come for 5 years when the rads are done - and that the rads will follow the chemo. Hungry - tell me about it!!! I worked hard to lose more than 2 stone when I stopped work a couple of years ago and the weight is definitely creeping back up on me. I am permanently hungry. I think it's something quite a few people experience. Oh and the loaf - maybe you should wear that on your head!!! Can't wait to hear the next installment of entertainment from your Mum!! SaraB, Vanns, Christine, so sorry about the spots. Hope they get sorted out soon. Tracy my scalp was tender when I first clippered and then shaved my head but it's sorted out now it's had fresh air on it for 10 days or so. I slather E45 on it and think that helps. Spacehopper - great post. Made me laugh. Thanks for the info about allerclear. I'll look out for it. Elaine, I had underarm soreness after FEC1 for a few days and more so after FEC2. I was referred back to the surgeon after FEC1 soreness who said it was all just everything settling down. Hope yours is the same. Sorry for missing some people. Thinking of everyone Love, margieteexx ... View more

Hi everyone Day 7 and I'm just starting to feel a bit better. Still had no really horrible SEs this time round, but I can't believe how weepy and sorry for myself I am. I can't stop crying and though I've never been a particularly depressed sort of person I certainly am at the moment. I put 90% of it down to my hand problem. The bruising is still really pretty bad and the hand itches and is sore and achy right down to the wrist. I did mention it to the chemo nurse when I spoke to her on Friday and she said the vein can continue bleeding for a while even after the cannula has come out. I'm keeping a close eye on it but do think it is slowly improving. I'm having a CT-contrast scan on Friday and think that involves putting the contrast medium through a cannula so I'm obsessing about that right now. Isn't life such fun. Sara12, how are you now? We're level on dates. Elaine and others who had FEC2 last week, how are you? Thinking of this week's bunnies too. Good luck. I've spent time this afternoon checking bad through our thread and seeing how many have made it back into the warren. A lot of us have but Gadget-gal, littlechick, dstace and others - where are you????????? And more to the point, how are you? Love, margieteex ... View more

Hi Yes, the warren is a cold and lonely place at the moment. Come back others, we miss you! Bunny paw is improving slowly but is still very sore - accidentally put it in some luke warm washing up water last night and nearly jumped out of my skin - it burnt me and turned the skin that had touched the water bright red. Very weepy night as a result last night and this morning I woke up sobbing. I could see the horrid chemo cat lurking in the corner, there was me, chemo bunny, lying in bed sobbing with OH snoring alongside me (he soon woke up and healed me with big cuddles). But where was I in all this? I feel I've lost myself, the real me, at the moment and I want my life back. It'll come, but isn't it hard going through this battle. WE WILL ALL GET THROUGH IT THOUGH. Love to bunnies everywhere. Let's try and keep smiling whenever we can. love, margieteexx ... View more