Don’t like red wine lol one of the drug treatments I was given can irritate the bladder. As i am already susceptible to utis (on antibiotics for an uti as well) I am having drink lots of water and self catheterise.
Think gonna to be brave and get my OH to shave my hair as don’t want to wake up with it all of it over my pillow or it blocking up plug hole. Rather it’s me that takes the hair away rather than chemo.
Good luck with the results on Thursday, hopefully your SNB will come back negative and you can move onto the next stage of treatment xx
I had the same chemo regime as you are having. Started in April 2013 and finished in July. I had my chemo before surgery which was good as I could really see the benefits of the chemo on my lump, especially when I moved on to the tax!
The side effects on EC90 were fine for me. I have horses and rode all the way through chemo. Even managed to qualify for our regional finals and competed in the finals 2 weeks after finishing chemo. I suppose what I’m saying is to keep going with it. It’s good stuff and if you have something to aim for at the end you may find you are more motivated to deal with whatever comes your way.
I’m now back at work and pretty much back to normal.
Thanks for the reassurance about the EC90 chemo regime. Before getting BC, my idea of chemo is no hair, being skinny and pale and throwing up everywhere so was horrified when I was told that chemo was recommended to me.
Touch wood I feel normal and I think the anti-sickness meds they give us are fantastic the steroid medication certainly makes you feel invincible lol.
How did you find the docetaxol? Is that roughly the same as the EC90 in terms of SE? I am just hoping I will stay feeling well with minimal SEs.
All the lovely ladies out there that is about to start chemo. It’s no way as bad as we think it’s going to be and the anti-sickness meds you get does what it says. There may be bad days (I am waiting for mine) but I think there will be more good days than bad xxxx
Forgot to ask, how long before the hair goes on the EC90? Got told by the nurse its anytime during the first week after the first chemo. Was hoping to keep mine a little longer than that! Xxx
My hair started to go after the 2nd chemo so I took control. Had a bottle of wine with my hairdresser and shaved it off. My wig was beautiful and was like my old hairstyle (but much better condition!). My mum was diagnosed aswell in December (it was a horrible year for our family) and she had 6 x ec90. She cold capped for her first one but decided never again! She had a last chemo 4 weeks ago and still has her hair! It’s a lot thinner than it was but still a full covering. Noone else would know she had gone through chemo. She had it cut short before hand to keep the weight of her hair lighter. Everyone is so different so just prepare yourself for it. Mine actually started growing back whilst on tax and it’s come back really lovely. I would have never dared to have it short and dark (i was blonde before!) but I love it and the amount of people at work (some don’t know what I’ve been through) say it looks fab. Every cloud and all that
My tax was harder than the ec90. I had no side effects with ec90 but not many with tax either in comparison to some of the other ladies I’ve read about. I had the 4th day after infusion as my bad day where I felt like I’d been punched in the head! But that soon went and for tax 2 and 3 I was ready for it so just took paracetamol on days 3-5 which definately helped.
Everyone is so different but just don’t let it get you down. On my first tax and probably because I’d found the ec90 so easy going, I was a bit down for a few days as I thought “great - this is what it’s going to be like for the next 9 weeks” so I gave myself a good talking to. Once you get in to that downward spiral of negativity it can be hard to get back out of it!. Give yourself the days rest when you need it as your body does need to recover, but don’t stay down too long. That’s the advice I also gave my mum who is 71. She continued going to the gym 3 times a week through out her chemo just to keep some sense of normality and structure to her life.
If you need any advice then feel free to PM me. I found the advice from those who had gone before me invaluable. Your not in this alone.
I have read this thread with great interest and am so impressed by you all. I went to my GP with a problem in one breast, and they discovered cancer in the other one! I had the biopsy three weeks ago, and the result two weeks ago. I now have the date for surgery - 7th July - and have had one long appointment at the hospital getting an ECG and filling out long heath forms with the nurse. Another appointment on 2nd July, five days before the operation, though I’m not sure what this one if for.
I think I am in denial, as I go to work as normal and forget about it for hours on end. I haven’t told anyone at work apart from one woman I am very close to. I haven’t told most of my family - I just want to get the operation over with and get on with my life. I hate all this waiting - though I know I have not actually had to wait long at all! I have been told there are two small tumours, which they will take out as if they are one. They are both small - stage 1 - and a slow growing kind. They don’t think it has spread to the lymph nodes, but will remove two and check during the surgery. If it hasn’t spread, then radiotherapy for 3-4 weeks. I am sick to my stomach at the thought of chemo as that means I can’t deal with this privately, and I’ll have to tell folk at work. I do not work in a place where you would want everyone to know!
Thank you for all the advice here. I went out today and bought the Genie bras from BHS, after reading the posts yesterday evening. I also bought Dove shower gel and shampoo and conditioner and anti-perspirant - a friend was told this was fine to use after her surgery and so she bought a whole lot and was fine.
I am trying not to get ahead of myself and stay in control and normal - but I have been clearing out drawers and cupboards and sorting out paper work. My husband is very supportive abd very positive, but I find the hardest times are trying to get to sleep. Imagination in overdrive! So reassuring to read how many of you did the same! I worry about my sisters, my daughter, and my nieces. There has been no BC in our family, but now there is. On January 26th I was diagnsed with diabetes, and have spent the past months since then losing 5 stones so I could control it with diet and exercise. I bought a second hand treadmill and can now do 5k. Apparently with so much fat lost from my breasts it was easier to detect the cancer. Amazing - it could turn out to be a good thing that I was diagnosed with diabetes, though it certainly did not seem so a the time.
Anyway, so sorry for this long first post. I am scared, but keepng busy, and working really hard to remain positive. The consultant used the word ‘cure’ and I am crosing everything that this is the case. Best of luck to all you great women - and thank you for your generosity in sharing your experiences.
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Thank you so much for your replies - it is so reassuring to read your stories and know that as you have proceeded through treatment you are feeling more positive and more in control. I have been reading as much as I can about what is about to happen, as I am a person who just wants to know. What a great bunch of women you are - it is hard to share this terrible news with family and friends and somehow it is easier to share like this with other women who are experiencing the same thing. Like you all, I just want it all to be over - I know it has only been weeks, and only two weeks today to surgery, but it seems so very long and it is hard to keep trying to be normal and do normal things. However, I made myself do an hour on the treadmill, though I couldn’t really be bothered, and I went to the doctor’s surgery to give blood to have tests for my diabetes levels. Strange to think I was so driven by all that a few weeks ago, and now it seems much less important.
All the very best to those who have treatments about to start - sending warm cyberhugs!
Hi everyone just back from 5 days away. I didn’t allow my self to think about surgery on Friday ( well not much!) but now that I’m back I can relate to all the comments that. I’ve read. Last night I felt suffocated and ended up going out for a run ( in the car) I’m sorry to say I’m not as fit as some of you ladies on treadmills. I’m due to get married on the 10th august and right now I feel like calling the whole thing off. It seems so frivolous to be thinking about that and I’ve no interest on making decisions about anything , I’m afraid to say up my partner as he has tried to be so supportive saying that we’re going through this together but I want to scream no we’re b…y not! He is a nurse also and he is very good but at the moment everyone is just getting on my nerves. 56 and behaving like a truculent teenager! Anyway I’m off now to buy jammies no doubt something will annoy me this morning and I’ll end up standing there like a nutter trying to decide the right pair I swear I’ve been followed by store detectives due to my indecisiveness over the last few weeks. Jayne a special thanks to you you have at all times been the voice of reason here hope all goes well for you. I can’t wait for the day I will not be avidly scanning this forum . Love to you all maz x
I am writing this to make you smile, but also to share some positive thoughts. My niece works in cancer research, in the very hospital where I will have my surgery on 7th July. When she heard my diagnosis she went straight to look up all the information she could, and also looked up the surgeons to see what their track records are! Anyway, they have made HUGE strides ahead in the treatment of BC, even in cases where the cancer is really quite advanced, and the outlook for all of us has never been better. Apparently more women than ever before are being cured, even following very invasive surgery, and lots of chemo and radiotherapy, with no return of the disease. Some have a much. much harder time than others on their journeys through the treatment, but we have to stick with it and try really hard to remain positive and look to the future when we are past this stage, and we most definitely do have a chance of achieving the ‘normal’ life we all are desperate to have again.
So, look forward to your wedding minimarie56 - it is not trivial, but rather a very positive step forward into the next part of your life. Have treats. Plan for a future. Buy nice nightwear - I went on Saturday and bought things I would never have bought before just to go into hospital. I bought lovely, expensive body moisturing cream to prepare my skin for surgery and radiotherapy. I bought myself the Genie bras that were recommended. Sounds a bit over the top, I know, but I am investing in myself rather than in everyone else at the moment. My oldest friend went through exactly the same as you Sandie73 seven years ago, and she had lots of surgery and treatments - chemo, radiotherapy, hormone therapy etc. On her last radiotherapy day I picked her up from hospital and took her to an expensive hotel with a fabulous spa and we had a great weekend. We both took champage and when she was tired we lay on our beds, her with her bald head, and me covered in face cream, watched movies, and laughed like drains. She is now 7 years on, completely clear, finished the 5 years of drugs, and is looking great. She is a glass half full person, and I’m absolutely convinced that this is why she has done so well. I am trying so hard to be just like her. Sending warmest thoughts to all you women whatever you are facing in the next few days, weeks and months.
Hello everyone, I was diagnoised last week…thought I was going out of my mind untill I read some of ur stories. Lack of sleep, mind doing overtime on self diagnosis. I had a CT scan and Bone scan today and will have an Ultra Sound Neck Scan tomorro which is some relief to know the Doc’s are assessing it to confirm what is next…Concentration is gone out the window, just burnt the veggie soup I was making for lunch tomorrow, my hubby just laughed, usually he would get stressed, but I am sure he is at max stressed level already…Been difficult week, telling family and friends and everyone looking for ideas to help with what to eat etc. But I do feel so lucky to have all my friends and family, It is so important to talk, please do not keep this to yourselves, everyone wants to help and get great comfort from it. My sister who is 2 years younger than me has Lung Cancer since 2010, she is my inspiration at the moment, and gives me much hope. My Dad is also having tests for Prostate Cancer. Both my Dad and Myself should get some answers on Thursday, so fingers crossed we get some good news. All my immediate family live in Ireland so it is not possible to see them at present and I know they are so worried. I have sent them messages to reassure them that I have great support here as it is so important to me to reassure them…Thank you for listening and I will check in from time to time for inspiration from you all, and will endeavour to keep up beat…xxx
Hi catlady19 and welcome to the forums where you will find support from your fellow users, it sounds as though you and your family are coping with a great deal of worry at the moment
Please also feel free to call our helpliners to talk any concerns or queries over, they are on hand with practical and emotional support on 0808 800 6000 weekdays 9-5 and Saturdays 10-2
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It is really interesting looking at our reactions to bad news. In January when I was told I was diabetic, I was told by my doctor (who has been our GP for 25 years and who I like and respect very much), in answer to my question whether this meant that I would always be diabetic, that while it was always believed that once diagnosed that was us for life, recent research studies in Newcaste University by a Professor Taylor and his colleagues has shown that it is not. My GP knew I would go off and find the articles, and of course I did, and read everything there is to know about this potentially awful disease.
The researchers hypothesised that with a very low calorie diet we could reverse our diabetes, because clinically obese people who have bariatric surgery (gastric bands, or stomach bypass) lose the diabetic symptoms and high blood sugar readings within weeks, not because of the surgery per se but because of the sudden and dramatic reduction in calories and the overall weight loss which gets rid of fat in the liver and pancreas. They found a way to scan those organs and charted the loss of fat in the organs of the participants (fat which causes type 2 diabetes and impairs insulin function).
Anyway, I am telling you all this because there are a lot of us on the Diabetes UK forum who have been doing what is now called the Newcastle diet. We are clearly a determined bunch, and we support each other. I have lost 5st 2 lbs, 29% of my body weight, took up exercise (on my second-hand treadmill) for an hour a day and as of today I have had completely normal (non-diabetec) readings for 10 weeks. I test 5 times a day, and enter the readings online so my GP can monitor me. My GP and the Diabetes Nurse are amazed! Taking control has been the real driver for me, and if it could be reversed I was absolutely determined to achieve this. Accepted wisdom has been - and continues to be - that it can’t be reversed, but there are many others on the forum who have done the same as me and several have now been taken off the diabetic register! I think we should approach our breast cancer in exactly the same way! It has not been easy since I began the diabetes journey on 26th January, and this new journey will undoubtedly not be easy, but we have so much to fight for and we CAN take control. We will get through this, and it will be hard, but we all have so much to live for. Eat healthily, exercise when you can, try hard to avoid stress, do things that make you feel good, and most of all look after yourself. My GP asked me i(before my cancer diagnosis) if I would be prepared to talk to other newly-diagnosed diabetic patients (my surgery is a teaching practice) and he is clearly absolutely convinced that taking control can have a very positive outcome. I will do it, of course. He advised me to approach the cancer with exactly the same level of determination. In the future we can talk about our experiences of beating this scary disease.
To keep me motivtated my sister went on the diet with me, but I have lost more weight, especially over the weeks following my recent diagnosis. Today I said to her, as a joke, that it was amazing what a cancer diagnosis could do for a diet! She was not amused. Warmest regards to you all. P xx
If I need chemo - and I hope I don’t of couse - my family are apparently going to chip in and buy me a really good wig (my sister’s idea). Apparently they are quite expensive (around £200 so about £20 each), but they have real hair, can be styled to look just like our old hairstyle (if we choose), have a more confortable backing which doesn’t irritate the scalp and they are worth the money. So, we can be confident and feel we look normal. You will then look and feel good being a bridesmaid. I hope the antibiotics work well and quickly for the rash. Just keep thinking that any escapee rougue cancer cells are being blitzed! Picture them being nuked (this is what my friend did when she was dealing with chemo side effects). That’s my first tip.
Today I got dessed up to go to work - you know what I mean, not simply my usual work clothes - because there was something special on, and people I hadn’t seen for ages arrived. So, I have just come home from a whole day of ‘Wow, you look great! You have lost so much weight! How much healthier you look! You have never looked better!’ So odd to be told all the time how well I look, when I know I have breat cancer and am soon having an operation! But of course I decided not to tell anyone so they don’t know. Booked my holidays from 7th July - day of the operation - and hope to be well recovered by the time they finish.
One of my colleagues had a mastectomy at the beginning of the year, and reconstruction at the same time. her surgeon decided that while the outcome was really good, it could be better, so last Thursday he got her back in and took some fat from both her thights to inject into her breast. She is delighted! She feels that in one fell swoop she has completely identical breasts, and thinner thights which she has been trying to get through exercise. Every cloud she thinks …
Hope you had a good lunch. It must have been hard being in the medical profession and having all your colleagues and you knowing so much! I am trying so hard to be positive but am anxious about the surgery and the anaesthetic. I know that thousands of people every day have one, but the thought of being knocked out is scary. I have had an anaesthetic only twice in my life, a very long time ago, and worry now that something will happen.
This evening I have cleared out all my drawers, and thrown out lots of things that I haven’t touched for years - have hung on to them, thinking I might need them again. Tomorrow it is the turn of the paperwork. By next Monday I’ll have the cleanest, tidiest, best organised house ever!
Warm regards to all you women out there - and hope things moving ahead well for you.
I know you are right of course, and I should try to be realistic and remember that they do these operations all the time and that everything will be fine, and I do manage to think like that most of the time, but sometimes the imagination simply takes over and anxiety creeps in. I just find this waiting so hard, and want the 7th to come so I can begin the first steps towards getting rid of this disease. I want the cancer out of me, and then to heal, so the next thing can start.
I laughed at your story about taking your husband’s things to the charity shop and then asking them to hide them towards the back in case he walks past! I filled a large clear polythene sack today with lots of things, then put it into a black sack so my husband could not see his (old but much loved) clothes about to go out with the bins! Began on the paperwork today – but stopped to meet my daughter for coffee. We were laughing at things I found in the clear-out – a letter she wrote to Santa in 1990 telling him she had moved house, with a map of how he could find her; some things I had from my mother’s house after she died; some hilarious photos from the 1980/90s with us in odd clothes and with crazy hair styles. Then I came home and did an hour on the treadmill. I find the exercise is actually quite good for me as it seems to calm me down. I am here on my own tonight as my husband is away with work colleagues, and though he did not want to go I insisted. Our lives are so strange just now, and I so want them to be normal again, so I made him go. He needs to think about something other than cancer, and not feel guilty for having some fun!
I am so sorry to hear you are feeling so bad just now, and wish I could give you a real cuddle! Our fear is normal - and we all feel it - and you KNOW that the chemo will end and you will be able to get back to your normal life. I haven’t arranged a holiday either as I was not sure what would happen, and indeed am still not sure, but my sister is just off the phone and she wants the four of us to go to New York in May next year. Apparently May and September are best, as it is not so hot, and if we plan May then we can save up and look forward to it. I know she is also making plans to make me see past this stage to the future, but it made me feel better.
I have a young colleague at work (30s), who has been off the best part of the year - she had a lumpectomy, chemotherapy, radiotherapy, mastectomy, reconstruction, hysterectomy and just last week she had another operation to do more work on the reconstruction. She is one of the few people I have told, and she is incredible! Absolutely determined, focused and positive. She told the oncologist she wanted MRI scans regularly to keep a close eye on what is happening and he agreed! This is how she is dealing with the fear that it will come back - to be checked very closely with MRI scans and mamograms. She told me she has far too much to live for and will do wahtever it takes to see her boys grow up. I so admire her.
Excise horrible people from your life - you just don’t need the grief. It is her problem if she can’t be civil and polite to you, especially given that she must know what you are dealing with at the moment, and she is not worth giving headspace to. Focus your energy on yourself, and your nearest and dearest.
It will end, and your hair will grow back. You know it will. The chemo is one of these awful necessities to kill off any remaining cancer cells - and will end and you will feel better and less anxious for the future.
xx