Breast Cancer Now Forum

Hi I am also on vernoralbine but in tablet form. My cycles are ongoing for 3 weeks without a break, day 1, 8 & 15. Just had day 1 cycle 2. do not have many side effects yet, just very tired around day 2 & 3 after taking tablets. Loss of appetite, very slight hair loss this week, but not very noticable. Onc. said I should be on for 6 cycles. I have second recurrence skin mets on double mastectomy scars.First recurrence had taxol which worked well for about 9 months. This time tried capecitibine but after 4 cycles told it was not working so changed to venoralbine. Still coming to terms with this, told it may keep coming back, but can be treated, but for how long?? And what would be my next treatment option? As I have had so many chemos, veins are not good, so having difficulty with blood tests etc. Normally have been positive and took treatment well, but I am feeling very depressed this time round, crying a lot. Sorry to be pain, just needed a moan. Doreen ... View more

HOORAY ABOUT BLOODY TIME. Why do we english (sorry no disrespect to welsh/scottish) have to be last to get anything. When I was prescribed letrozole last year I asked GP for 3 months supply, to which she replied no can do its down to funds. She could only give me 2 months at a time. I was then paying for scripts, and a yearly pass would not work out any cheaper. Since being dx diabetic I now get free scripts, but does not alter the fact that life prolonging drugs are still not being given out because of cost to the individual surgeries funds. And because my scripts are now funded, i presume by government/nhs money pot, I can now get 3 months supply. VERY STRANGE COUNTRY WE LIVE IN. I did consider once moving over the border to Scotland to get free help. ... View more

Hi all Great site. Great to read all your comments on feelings I can certainly relate to. Had first mastectomy March 07, second in Feb 08. I was lead to believe(BCN/Onc.) we BC ladies had to wear a prothsesis for our own confidence and the look 'normal' to other people. I too have found it easier to stay flat chested. Never offered reconstruction but would have refused anyway. Heard too many stories of people in so much pain afterwards. This may not happen to everyone, but I sure as hell have had enough pain without giving myself any more grief. Currently have local recurrence in first site (second time in 14 months) Into third day of Capecitibine so even if I wanted, I could not bare wearing bra or prothsisis next to skin. When at home I always went flat, but found I was self consious outdoors. After reading your stories, I feel more at ease in being flat chested, although I am still lopsided after 2nd surgery still shrinking after rads. What do we care what other people think. Be proud that we are all still here to show off what we have all gone thru. ... View more

Hi mabel Thanks for this info. I am just about calming down now after a day full of tears and fears, I know my last chemo, taxol and gem. did work to clear skin mets, finished Nov 07. I only wish I had gone straight to onc. when I found new rash. I maybe would have been started oral chemo by now. Although I was told another 3 weeks before treatment starting would not make any difference.Told to go and have a good holiday and face it when I get back. Hey ho just another setback. Yet another struggle to keep sane in all of this. Sorry for sounding negative, but it helps to sound off. How many cycles are you having or is it indefinate? ... View more

Sorry meant to ask, is it safe to swim with skin mets?? ... View more

Hi all Been having problems with infection (GP's diagnosis)on mastectomy scar for last month. Saw oncologist this morning, confirmed skin mets. around mastectomy scar for second time in 12 months. How can GP's brush this off. I have totally lost all confidence in them. I brought forward todays visit at hospital as I am about to travel abroad for hols. tomorrow and wanted to know what I was dealing with. Holiday was meant for some much needed R & R. Now I keep thinking it could be my last so make the most of it. Told I will be put on oral chemo. Not sure which drug yet. Has anyone got any advice, what drugs they are on and side effects. I would appreciate some info before the decision is made on which drugs I will be on. Thanks ... View more

I have also had mammo's, bone scan, mri's & CT's in the last 18 months. The waiting for results never seems to get any easier. Now 6 months since second mastectomy and rads. Constantly checking for new lumps or any new changes in skin/scars. Am I being paranoid. How do they check for recurrence after bilateral surgery?? ... View more

Hi all Glad to read all your comments on numb toes etc due to chemo. Had 12 doses of chemo last year one which included Taxol. Finished Nov.07 but suffered with numb toes, aching feet all last year. GP thought it down to diabetes symptoms. Did not know Taxol could do this. Will bring this up on next GP appt. Still suffering sore feet, love to walk but not very far. Does this ever get better?? ... View more

Hi all Had original rads 1996 after lumpectomy and chemo. Arm was numb for 4-5 years but gradually got some feeling back after that. Was told lymphodema can develop at any time. During my chemo, mastectomy, more chemo last year, i noticed a dull ache and getting stiffer. Felt too ill with treatment to look into it, but after second mastectomy, was measured and fitted with sleeve. I wear it every day, during work, housework etc. and I guess it has made a difference. Will find out on my next check in October. This can develop at any time, so please ladies keep excercising, moisterising and checking for swelling, it can be controlled. ... View more

Hi all IA herbalist recommended Rosemary shampoo and conditioner. As I was still on chemo at the time, I asked when I could start using. She said to use a small amount on scalp, even though i was as bald as coot. I have used it ever since. Regrowth started in Jan and have had it cut 3 times since. Worked for me, maybe worth a try . ... View more

Hi curtainqueen I had similar problems in Debenhams with loud mouthed assistant (she only looked about 16). was then told there was probably one bra available and continued to march me towards rail. There was in fact a few styles to choose from, but unfortunatly not for us larger ladies. Husband in tow, he was annoyed at having to go thru this experience just to buy a bra, I made a hasty retreat. i did find a local specialist shop, owner also had BC, so new exactly what I needed, tried quite a few bras and prothesis. I bought 2 Ameona swimwear/silicone. BCN advised me to have one 3 sizes smaller as I still have some swelling (3 months after rads?) new ones are both same size as they sit around swelling without pressure. Great having that bit extra confidence and wear fashionable tops again without the need to go baggy. Department stores are all very well as long as you know your size without having to ask for help, I wish you well and hope you open that shop. There are lots of ladies with same problems so I am sure you would have great success. Doreen ... View more

Hi all. reading this thread has really cheered me up today. had a good laugh at comments, most of which i have also heard through the last 12 years since first diagnosed. When i had recurrence last year, told would loose hair with chemo, my onc said 'think of the money saved at hairdressers' felt like sh**t after bombshell of more treatment, but when i calmed down, had to laugh, she was right. Doreen ... View more

Well done puppydog for your determination and hope your fight pays off. I have had similar problems having had bilateral mastectomy. tried M & S but being rather large (was 42C with boobs) i found mastectomy bras only went up to a size 40, why?? I suppose I could of asked to order, but I am not one for pushing sales assistants, and just want to pick something from rails. have tried Nicola Jane, some bras OK, but others not high enough around sides, i have a lump of fatty tissue on one side under arm. have also tried Asda. the £6 bra is great as a stand by, but found it does not give enough support.so still looking for the perfect fitting bra. as to prothsesis, the pair BC nurse at hospital supplied were to big and heavy so resorted to buying lighter ones from Nicola Jane. still trying to get used to these, but if i find the right bra, they may look better. going abroad on hols soon so hope to find comfortable bra, will try Debenhams. Dozz ... View more

Hi Hazel, i am same. right scare is a lot tighter and left still looks light half a breast. had a brainwave today. I had bought a pair of sponge/swimwear prothsesis online at a size my bcnurse told me i should be wearing.. decided to cut them down to fit, one smaller than other. they look ok. will still try for fitting for permanent silicone ones, but feeling a tad brighter now that i can wear a bra without keeping a check on wether they look right. dozz ... View more

Hi Dawn, thanks for the info. as i had large breasts before bc (44C), i suppose i can choose to go smaller. I have bought some from online suppliers, but i think going to a fitting session would be more helpful. will look at suppliers in my area. thanks dozz ... View more

hi alison, i also have high bp. both gp & onc dismiss my thoughts it is down to aromasin. told it could be because of diabetes. yet another tablet to take. no nausea though. hope you do not have too many side effects this time. ... View more

hi, have been on aromsin for 5 weeks now. Onc. unsure if I am still hormone receptive, but trying them out. After about 3 weeks started on side effects. Skin sores, blistering and joint pains. Thankfully they seem to be disappearing now. Not sure if this means treatment is working. Did you suffer with arimidex?? Why are you changing?? Dozz ... View more