Breast Cancer Now Forum

Hi Tracey I was diagnosed in 2012 and had 15 cycles of herceptin, I couldn't endure the full 18 because of toxicity. It is 3 years this month since i finsihed herceptin and I am still in pain. I have had scans, constant blood tests but nothing can be found. My pain is around the side of my ribs on my cancer side, up along my shoulder blade and in my upper arm. I am on the physio roundabout again suggesting it is soft tissue damage as of course the medical profession won't want to consider it is herceptin. I am on the Persephone trial for ten years as they don't have enough long term data about long term effects.  So I don't have any words of encouragement but I can tell you that you are not alone. Two of my friends just had 9 cycles of herceptin and neither have any long term problems.  After number 15, I was just crying with the pain in my upper back so the onc stopped it. Saying all that, I am now 4 years clear so am still glad herceptin was there for me. Hugs Pixie x ... View more

Bumping this up again. i started making these happy bags when I started my chemo in April 2012. so far I have raised £13,000 for Cancer Research and won the Just Giving fundraiser of the year 2013. A couple of weeks ago I was awarded Cancer Research highest award when I was fiven a special commendation Flame of Hope medal. i share this to spread a message of hope, great things can come out of tough times. i have raised a lot of money but even more smiles along the way. If you want to know more about my Happy Bags, please message me. i am not allowed to add a direct link on the forums. Pixie, form the April 2012 thread ... View more

Bumping this up again. i started making these happy bags when I started my chemo in April 2012. so far I have raised £13,000 for Cancer Research and won the Just Giving fundraiser of the year 2013. A couple of weeks ago I was awarded Cancer Research highest award when I was fiven a special commendation Flame of Hope medal. i share this to spread a message of hope, great things can come out of tough times. i have raised a lot of money but even more smiles along the way. If you want to know more about my Happy Bags, please message me. i am not allowed to add a direct link on the forums. Pixie, form the April 2012 thread ... View more

Bump - because this was and still is the best thread! Nothing has come close to being this funny 🙂 ... View more

Hello lovely Herceptin Heroines thank you so much for responding, this site just continues to amaze me With the support and encouragement available. I worked all the way through treatment, just cut down a bit on the chemo week. I rum ny own business so very hard to take time out. I do tend to live at a fast pace with work, fund raising and travel.. So perhaps all that is contributing. i realise my Herceptin ses are high class problems compared with so many ladies who are dealing with secondaries and reading the responses on here has caused me to give my cotton tail a good tug and just to grit it for these last 3, think one of the things that has compounded it is our last holiday just over a week ago. We were in New York and found myself really struggling with it all and 2 afternoons just had to go to bed. OH not impressed. We have another holiday booked for end of July, one of the river cruises that involves a fair bit of walking and I am getting so anxious that I am not going to be able to manage and spoil it for my OH. I know all this crap isn't my fault, but my treatment has been going on so long that I think my OH is just totally fed up of it. like him, I expected that once the chemo was out of my system I would be dancing the fandango, but Herceptin and Arimidex are just so blooming tough. jackie I am in awe of your managing housework, OH does ours or it doesn't get done. So pleased you posted, you are just one ahead of me so perhaps we can see these last few through together. pixie xxx ... View more

Many thanks for those wonderful ladies who keep this thread bumped up - you helo me so much xx Just to let everyone who has supported me know, I have now raised £12,000 in just one year and at £2 a Happy bag - that's a lot of happy bags sold 0and assembled all by yours truly) . i also won the 2013 UK Just Giving award for Most creative fund raiser of the year and have just been presented with the Cancer Research Flame of Hope award. So those who have bought Pixies Happy Bags, God Bless you, we are making a difference. Those who want to know more, please do send me a message. much love pixie ... View more

Hi Just bumping this thread up becasue i am having a day of feeling really really fed up with my herceptin treatment. Have just had cycle 15 - so 3 left and i am almost at the point of picking up the phone and saying 'Go away" - have had enough. I started a thread in here at the beginning of chemo in April 2012 and have made lifeliong friends. but I now see them allgetting so well, doing 10 mile BCC walks, going to Gyms, looking gorgeous... and me? I am on my knees with the cumulative fatigue of herceptin. I work all day Monday, tuesday, Thursday and Friday and spend every blooming Wednesday in bed - fast asleep. I ache, my nose is driving me to distraction with dripping, snuffles and big blood encrusted bogeys, my uper arms feel like I have been hit with a baseball bat.... and i am walking like a 90 year old. And I am so bloated and fat I look 9 months pregnant. Aaaagh... trying to be grateful for the £3000 bag of gunk i get every 3 weeks, but boy have i had enough. please, some wonderful lady tell me how long it takes to pull up after all of this. i want to feel well again and be able to push the hoover round without having to lie down afrterwards. I have done surgery, chemo, 25 rads, 18 herceptin and am on arimidex. I felt really well until they decided to make me better. Pixie xxxx ... View more

I had my first portacath fitted under a local anaesthetic with no sedation. I was okay.... I am very squeamish but didn't see anything at all, a nurse held my hand and chatted the whole way through and all I felt was a bit of shoving and pushing. The procedure took about 45 minutes. I was left with an incision about 5 cms on my chest and a smaller one on my lower neck. These were stitched and I had the stitches removed 10 days later. After the operation there was a very small amount of bruising but no discomfort at all. pi had chemo through the port the next day and gosh it was wonderful. All those people sitting there with cannulas in their hands and i felt so pleased to have had the port. of course it is still a needle, but much less faffing about than a cannula. my 2nd port was inserted by a surgeon under a general anaesthetic as the first one became infected And had to be removed as an emergency. That wasn't nice but it still didn't put me off having another one fitted. They are an absolute wonder. Protect our veins and if you are HER2+ as I am, i feel its the best option. ... View more

If I only ever offer one bit of advice to ladies starting FEC its get a line put in. i am from the April 2012 chemo thread and many of the ladies had collapsed veins and all sort of trouble with FEC. The epirubicin is a horror. I had a port fitted as am HER2+ so all my chemo and Herceptin are given through that and have never had any vein or needle problems at all. ... View more

Afternoon ladies I haven't posted here previously as wanted to be sure any s/es i talk about are actually due to the herceptin. I have now had 11 cycles and finished chemo last July. I seem to do okay with Herceptin but I do have one very very bothersome s/e. it has affected my sinuses dreadfully. They had already had a bashing from rhe cyclophosphamide and rhe herceptin has compounded it. I find the effects culmulative and each cycle it gets worse. i leave a tissue trail everywhere, my nose never stops running, it gets full of disgusting crusty bloody sores and I snore so bad my husband is in the spare room. however, I work full time, and although I get tired and easily puffed, compared to chemo, it's a walk in the park. Just so very very grateful to be able to have this wonderful very expensive drug. i am given piriton and hydrocortisone at each infusion to lessen any reactions. my last herceptin is in August and I live in hope that my sinuses will start to recover. ... View more

Hopping in to say hello to Ambarose and Big M, can you see my bunny paw waving? just had my 11th Herceptin and it feels like a really long haul. My heart isn't doing too good with it as my function is down ro 53% so foodness knows how i shall manage rhe 10mile walk in May dor BCC... Sall rely on laughter with the bunnies to get me round. much love Pixie ... View more

Hello Elliedog I am pleased you have your results but of course sorry you find yourself here. I was diagnosed in january 2012 and have just had my first mammogram so waiting for results from that - even scarier than forst time around as I no longer have the cushion of 'ignorance being bliss'. The reason I am responding to you is you mentioned you are herceptin 2 and i can tell you more about that. We are tested for something called epodermal human growth factor, this is a protein that attaches itself to our cancer cells and encourages them to grow very quickly. If you have this, your cancer type is known as HER2+. Abut 25% of breast cancers fall into this category, most of them are oestrogen negative (ER-) or mildly ER+. I am a bot of an anolmaly as am 100% ER positive as well. HEr2+ cancer are treated with a drug called herceptin which is given intravenously every 3 weeks. the standard treatment is for a year - so that is 18 treatments. I am on number 11, so it does make it a long old haul. however, herceptin has none of the side effects associated with chemo. You do not start herceptin until after chemo has finished if you are on a FEC regime. If you are having Tax, your herceptin will be given toward the end of your tax. there are specific threads on here for HER+ ladies and you will find these under the section called 'targetted therapies. I underwent surgery, chemotherap[y, raidiotherapy and am still doing herceptin and take endocrine tablets every day to address the ER+. The thing I have learned is that all this is do-able once treatment starts as we get into a routine. We only have to deal with one part of our treatment at a time and believe it or not, time does pass quickly. I used this forum an awful lot whilst undergoing chemo and it was invaluable for me. We have become a very close group of friends who now hang out on facebook where we don't get moderated ( means we can bitch about what we want) We have all come out the other end and are getting well again, so much so that in May, 12 of us are doing the Breast cancer care 10 mile walk at Blenheim palace. Cancer treatment will change your life remarkably but if you focus on all the good stuff, and being able to have this treatment free of charge is very very good, life can become richer in other ways. get a group of buddies going on here, it usually works by joining the thread for people starting chemo at the same time and you will find that your journey although tough at times, isn't half as bad as you imagine. Good luck and warm wishes pixie ... View more

Hi Jayne I have a lot of experience of ports as have had more than one. My experience has been that once the port has been removed, you are left with a significant area of scar tissue and this does indeed feel lumpy and bumpy. I had more than one lump as there was also scar tissue along the vein where the catheter had been. I had my last port removed in july 2012 and the lumps and bumps only really seteld around november time. I got referred to a physoptherapist and she said to gently massage the area around the bumps, but not the bumps themselves, with 2 fingers using a circular motion as this helps to break down the scar tissue. My latest port is due to come out in August this year so expect this ome to also leave me with bumps. I must say, I was disappointed by the anount of scarring I have been left with on my chest. Wasn't made aware of that when the ports were ofered. Smiles pixie ... View more

Hi i feel quite humbled when I read about the difficulties and dilemmas some of you are facing regarding reconstruction. Mary, the draining of your lump sounds dreadful, i hope it has given you some relief. when i was first diagnosed, i read a book by a woman called Janice Day and her journey through bc. it helped me decide thai had I needed mx, i wouldn't have gone down the reconstruction route. It takes a lot of courage as these are big operations, so my special love to those of you going through it. sunday morning and still in bed as not 100%. As usual, i have been overdoing it. Last 2 weeks has seen me up into the early hours trying to keep up with the Happy Bag empire. It's hard work at such volume as there is a lot more to it than just making up the bags. Have put up a notice saying xmas order cut off is 10th December Otherwise I shall be at it on xmas eve. Gaynor, what a horror having a series of ineffectual oncs. Lets hope the next one is up to par. It seems there is a significant variation in bc care across the country. Outside of London and the specialist hospitals there, the best one is Southampton, so perhaps we should all move there. Wishing you all a gentle day much love Pixie xx ... View more

Hi bunnies... well all this casting couch talk..... Quite like idea of Julie Walters for me.... Sally- Anne is definitely Margie Clarke. No to Judi Dench for one of the twosome, but Anne Reid a possibility. However to get spot on, you need Dora Bryan and Thelma Barlow. Don't mind Kylie doing a guest spot, she is very classy. Must have Jo Brandt, adore her. as for the punkawallahs, well ladies, you can keep the eye candy, I want punkawallahas that can hold a sparky conversation and are very bright. So I would like Ian Hislop and Jack Dee to entertain me. hope all well, vanns half way over the Atlantic now. I am struggling with all things Happy Bags. Drowning in orders and working round the clock to get them out so am stopping all orders on 7th December and will start again after xmas. Raised £8000 now. much love to all. Pixie xx ... View more

Hey Bunnies!!!! Frantic bunny here - but happily frantic. I am officially viral. No not a virus, viral. 158 orders in last 2 days... Mary I am sorry to hear about your hump/lump/bump.... it sounds so painful and do hope you get some relief soon. Big hugs coming your way bunny. Margie - have a wonderful holiday - sounds quite idyllic. Stamps arrived saturday - big thank you, it does help. Am sorry so many bunnies are 'flat' - worried i may irritate you beyond belief as am so blooming wired all the time. There is a tremendous book called 'The cancer Survivors Companion' by Dr Frances Goodhart. It covers all the roller-coaster of the aftermath of active treatment. Can't say I have read it thoroughlly but it came highly recommended by one of the bcns. if the flatness continues, well just maybe a visit to the GP could help - short-term medication really can get us out of a dark spot. Wendy - hope the telly gets sorted. I don't watch much telly but am completely hooked to all things Strictly and want to come to sally-Annes party! And sally-Anne, your night out sounded so special - I am thrilled you felt and looked so well. I am off to Toni and Guys on Wednesday, they do a special deal for post-chemo hair. And my hair is just bizarre. Come back my old colour, very dark but it is growing so thick and in odd directions - I seem to have developed 2 partings - one on each side and the hair grows to the centre. Tried blow-drying and straighteners but to no avail so shall see what can be done. Goddness, doesn't seem 2 minutes since we were all stressing about being bald and wigs and here I am on campo's tail and off to the hairdressers. Well, idea of a screenplay.... I do hope the gruesome twosome can be in the periphery. I have often though about writing a series of sketches as I seem to have one of those 'funny lives' - or perhaps its just the way I view the world. Or perhaps a series of books - 'Two Old ladies" series. However, mother and Auntie would murder me as of course, they have no idea that they are funny. Quite like idea of Julie Walters playing me (would prefer helena Bonham-Carter - vanity, vanity..) Vanns, Dawn French is NOT you... not sure who is as am rubbish at actresses names but someone samll dark and SLIM. Talking of slim... well okay tangential thinking... I am on a weight loss campaign. Seizing the amnesty off letrozole to try and shift the 2 stone i piled on during treatment, well chemo and rads. herceptin number 6 this week. None of my clothes fit and i am struggling to fasten size 14!!!! I was a 10 when I started all this malarky. So can't do much exercise as shoulder is buggered and leg joints achy (hercptin is really hard on the joints) so it has to be food intake..... lemon Drizzle cake out and rice milk smothies in. Oh joy. Anyone fancy being a slimming buddy with me? Couldn't bear going to a club - tried it and was full of women not like me. Vanns come and be me personal trainer! I should have started the 10week phsiotherpay gym re-hab on Friday but they wouldn't let me as they said now they know what my shoulder is, its too volatile for exercises. made me feel like I have a time-bomb at the end of me arm! Have been referred for urgent surgery - hmmm, well they shall have to fit it round me holidays! Have decided that 2013 is going to make up big time for this year..... So have booked up 5 fantastic holidays, places we have always wanted to visit, things we have wanted to do - going to sell our caravan (anybody want a gorgeous caravan?), the 4 wheel drive (anybody want a land Rover) and change down to a mid-size estate car (has to be estate becasue of all dogs). No more caravanning, I intend to be waited on hand and foot on holidays now - what we used to do until caravan and dogs turned up. They did really well in kennels when we were in new England so have no qualms about putting them in more regularly - does cost a bomb though when you have 4 of them. Worried I am going to be away when we do the Blenheim walk - when is it? As for March/April meet-up. No worries about my paws being trod on. More than happy to have someone else organise this one. Am still argy-bargying with Hilton as they whacked extra charges on my credit card the week after our last event. Right, thats me done, better get back to Pixie bagging.. Much love Pixie xx ... View more

Hey bunnies Just a very quick wave of paw to let you all know I love you all and i am okay - just completely run off my paws with the Happy Bag World. My total raised is now £6500! But incredibly full-on with all the various tasks involved (and OH not helping at all as he says I am driving myself into the bloody ground with it and he won't be part of it) Humpf! Methinks mrs Mojo is going to be taking a few days off too!!!! Love to all those with droopy whiskers and also to those with perky ears... Pixie xx ... View more

Hmmm.... chemo cards.... My mother and auntie are the sprightliest 83 year olds ever. Honestly, they can walk for miles.... however, when the occasion calls for it (i.e. they are after something) they can turn the old lady act on at will. They start dragging a leg and doing the hand tremble and mother pretends she is deaf! Let me give you an example... when they go on their holdiays, they always like to have the front left hand seat of the coach so they get to see more. Now everybody always wants this seat and it gets allocated quickly. But they turn up, dragging their respective left legs, doing the hand tremble, stumble up the steps a bit and what do you know, they get the front seat and prime position for the illuminations tour. They do it all the time.... in a busy cafe they will tell the wiatress about me aunties diabetes and she neds to have food quickly or she will go into a coma- so they jump the queue. Well yes she is diabetic, type B and controlled with the lowest dose of tablet! They ar incorrigible and if I challenge them get told they worked all their lives, paid into the system all their lives and its not their fault they aren't infirm.... (think there's some rational in there somewehere) so they see it as their due. So those of you standing on trains, in pharmacies being treated like anybody else... keep a headscarf in your bag, rub a spot of concealer into your lips, do a stumble and then pathetically stare at someone wh is sitting down! Vanns I am on St Eroids so wired to the national grid permanently - which is just as well at the moment as work falling outa me ears... happy/Xmas bags orders pouring in and spending every evening keeping up with them. Hair removal.... my hair is now like a lambs fleece! Really thick and springy and growing in all sorts of odd directions, it fascinates me. Shaving my legs and underarms with one of those Gillette lady razors that has the mosturiser block on them..as i did before and no effects. I am now 8 weeks without any hormone tablets and still having hot flushes, especially at night so can only think it due to the fact that chemo pushed me headlong into the menopause and the cessation of HRT. Its most unpleasant though. yesterday i was teaching and had a hot flush and just wanted to run outsode into the rain and take me clothes off - not the most professional of behaviours!! have a gentle and cuddly day bunnies much love Pixie xx ... View more

Evening bunnies Libby - Herceptin is like a chastity belt.... the invaders can't penetrate. How do I know? Well I am 8/8 ER +. My onc took me off hormone therapy 6 weeks ago as I wasn't doing at all well on it. He said he would give me a 4 week break and then review me. i saw him again on wednesday and i said i was worried about not being on hormone therapy when my cancer is about as oestrogen receptive as you can get. he said don't worry. HER2+ dominates qestrogen receptors and Herceptin is the best systemic therapy ther is. he isn't going to sart me on hormone stuff until finishing herceptin. So whatever this lady said is her projecting her negative fears onto you. you are a bunny - with ears and hair and a herceptin chastity belt. xx Okay, all this talk off angora fluff... methinks we have wished it on ourselves all this talk off whiiskers, we are now growing them! I started to as well but since coming off the hormones noticing I am much less 'fluffy'. I sugest we all keep checking our rear ends in case of sprouting cotton tails! Hilary your post was lovely, you are so good at including us all. Thank you for being you. Had a lovely day today. My youngest son who lives in Nottinghamshire came down and we went for Sunday lunch to a nice pub. I haven't seen him for 3 months and it was just so lovely. He is 20 and gorgeous. he works for Rolls Royce in Derby which is why he lives there and not here. We speak several times a week bt its not like getting a proper hug is it? I am well - really well. Mrs Mojo has moved in permanently and is making up for lost months, I am working full pelt, happy bagging and generally buzzing around like my pre-cancer days. This is amazing as 6 weeks ago i felt dreadful.. so it must have been the Letrozole as now that is out of my system, I feel great. Don't seem to get any S'E's at all with the Herceptin. This week I have to go for more x-rays and to see what they are going to do about my dislocating shoulder. Don't suppose i am going to be able to ski in February but shall still be able to snow shoe and throw snowballs! Pixies Christmas Sacks... oh my, I have done 200 in my first week and have run out of bags. I order from China to keep my costs down and am praying there is a tail wind behind that slow boat and my order of 500 gets here quick! Am way past the £5000 mark now and think I will pass £6000 by end of year. this week got a nice letter, a signed photo and a tweet from lorraine Kelly and this week Cherie Blair is putting the Xmas sacks on her website. Bunnyfeste - I am aware I haven't sent out the photos as yet. Please bear with me, i am doing something with them i hope all you bunnyfesters will love... and they will be landing on your doormats in December!! Speaking of Bunnyfeste - shall we go for a March/April date or hang on for the Blenheim bunny walk ( 10km only for herceptin hattie here) Auntie Mary has gone and bought a budgie, When I was a little girl, she and my Uncle Jack always had a budgie but she hasn't had one for about 10 years. Anyway she says she has nobody to talk to where she lives so has bought a budgie as it will be company and the cage was in the loft doing nothing. Mother doesn't approve as she is convinced it will have a contagious disease that Auntie will catch. Auntie has had her flu jab so says she can't catch bird flu and as she hasn't got feathers, she won't catch feather rot. She has called it Ernie as it has a look of Eric Morecombe but you can't call a budgie Eric..... budgies have to have a name ending in a 'y' sound and can I remember their Billy, Joey, Bobby, Sammy and Freddy? I have to ask, I just had to, how does a budgie look like Eric Morecombe (imagining budgie in glasses, flat cap and raincoat) she tells me he keeps lifting one wing and standing on one leg just like Eric and Ernie used to do when they sang 'Give me sunshine'. No doubt Ernie is learning the lyrics as I type.... Much love Pixie xxx ... View more

Well hello sparkly ladies! Hopping over from the April thread to wish you lots of luck and loveas you start the chemo journey. It's a road full of pot-holes but it is navigable, even though we do sometimes hit the reverse gear. For me, the best thing I did was to get fully involved with my April chemo thread. I t wa such a help and support to have others who were going through the same things. Our thread, i know i am bias, is probably the liveliest and funniest on the forums. Yes, funny. We ended up sharing so much else other than cancer, and we have cried but more than anything laughed our way through. Laughter is the medicine of the soul, and a good daily doese is the best tonic for chemo. We have all now finished chemo and rads and in October we all met up for our Bunnyfeste in Birmingham. It was the most wonderful joyous occasion. This will be you, 8 or 9 months from now. When I started this journey, I knew it was going to be a tough 9 months. So I said to myself, girl, you have been pregnant 3 times, just think of it as another pregnancy and the new life at the end of it is mine. Just a couple of bits of advice: 1) Don't suffer in silence. Think of chemo 1 as a trial, the one where you learn how to manage your s/e's. If your are sick, insist on Emend for subsequent chemos, it is miraculous. 2). Do not rush to buy wigs. Wait till your hair starts to fall around day 15 of chemo 1. I rushed out and bought 3 very expensive wigs before chemo. Only ever wore one of them and didn't wear that much. Was much happier with gorgeous scarves. Most ladies are, chemo make you hot and wigs make you hotter. 3) Do NOT google. You can frighten yourself to death. Just use 3 sites for info. This one, Cancer Research and MacMillan Sticke to each other like glue. Think of chemo as sparkly magic liquid mopping up the gunk. This time will go quickly... Promise. Much love Pixie xx ... View more