Breast Cancer Now Forum

Hi everyone Sarah here. Long time no visit. I can see that sjb cut and paste a facebook message I wrote. I wish I had known as I would of had the decency to log in and respond to your well wishes. It is great to read your all cancer free albeit with hurdles to jump and ongoing concerns with some things xxx rather than a secondhand update I thought I'd say hi myself. Obviously we are all coming up to three years of this blimmin situation. I have now had two big operations , involving a free flap from my tummy as all my Breast skin had to go to. This time last year it was still primary in breast area so east grins trad removed the lot! I had great recovery but the cancer appeared again in the skin near my neck in January just along the scar line. The biopsy confirmed what it was and the scan showed spots in my lung and chest lymph involvement , so it was feb this year I moved into the incurable group. I have tried two lots of chemo both ones that are for long term quality of life vs the hard hit cure. Both haven't worked and I found out last week that the second hadn't so devastated. All year feels wasted and I am pretty weak now as its lung, thyroid, chest, skin, armpits, around heart......pretty large tumours. It's time now. Royal marsden want me to try taxol on a weekly basis to see if this can control its growth .....really, weekly ... I have till Friday to decide .... I have to say I will probably give it a go but if the side effects are bad ....what's the point with no quality of life and not being able to do mum things. I spend to much time in bed now xxx well that's me, I have had 55 radiotherapy and 35 chemo sessions with 6 different drugs ..... The body getting tired now! Xx please I hope you don't mind this message, I haven't messaged coz I don't want to put doom and gloom but I felt updates should come from me and was overdue lovely ladies xxxxx  ... View more

Hello it's me. Xxx happy new year to all you angels. I am back on this forum and also joined secondary breast care group. Having done Dec 13 till Dec 14 and then March 15 to dec15 I have the horrid disease back in my skin. Well that's were I think I saw it again. Just had results and it is in my chest nodes and two spots on my right lung. Not got my head around it yet. It's weird the way their tact changed and told me I am incurable and as I am fit and well could wait before treatment. Well ladies I am still up for a fight and now know it will be part of my life for as long as I can cope. I hope to start carboplatin chemo in next two weeks for 8 cycles. I had gem/carbo last year and I responded well (enough to try a massive op) and coped well so I hope to be as normal as poss this year as I am not telling my kids the severity of it xxx I do hope you are all OK and I will catchup on the thread over the next day or so xxxx big hugs xxx ... View more

Hello Kelly and all. I have just been diagnosed with secondary tn breast cancer in neck armpit and right lung. Gutted. I am going to have treatment chemo of carboplatin. Inoperable. What treatment dud you have xx good luck I am still trying to get my head around it and wonder how long I have left xx ... View more

Hi. I have just been diagnosed the same with two spots on my lung. I have been advised on doing carboplatin. I didn't meet criteria of a new trial called pakt. How are you doing? ... View more

Good luck Bellabue and SJB ........3rd today half way ......great message SJB so positive xxx I am 3 rd FEC day 7 and feel fine but did feel a bit more tired this time however it's all worth it ......roll on April xxxx will be thinking of you today xx ... View more

Wynn, we are both triple neg and I had blood taken yesterday for genes brac 1 and 2. When do you get your results. Mine will then determine extend of mastectomy. I will have to have one done anyway as I have a tumour and a pre cancerous mass. Interestingly my lymph nodes haven't responded either ....didn't ask the question why but will xxxx ... View more

Hello a gets. Jemp0812 what a positive message so great to hear about your friend. I had my FEC 3 yesterday and doing tax in next 3 weeks it is a proven programme hence 3 of each. My lump has nearly halves in size. My hair has nearly all gone but have a wig too etc. I tried loads for mouth ulcers and they have been bad, after trying loads and after 9 days I started rinsing with good old fashioned salt water and they were gone in two days. Stings but works. Feeling tired and nausea today so just pottering about and hoping to East something later ...good luck to everyone and wishing you strength xx ... View more

Hi everyone, I have felt down last couple of days but to be honest it's the build up to FEC third one on Thursday. Felt okay biggest side effect for me is mouth ulcers which are making me grumpy .....been to work a few days and also worn my wig which was received positively but still worry it may slip of! Sending lots of care and strength to you all with se.s and feelings .....it is all so worth it as in a few months time we will be over it and that is a fact we must just focus on to help us in our down times. I hate my bald head, I hate my increased weight, I hate I keep having to go to hospital but this is all just the right thing to do ....I have next chemo on my birthday so bring in on and maybe I can grab a burger before I start feeling rough xxx take care and thinking of u all xxxx ... View more

Wow Wynn what an information loaded message I have taken so much from that. I sit here now with a mouth of ulcers so bicarbonate .....I am planned for 3fec and 3 tax so now feel I want to ask those same questions when I see my oncologist before I do number 3 FEC. Can I ask are you private or nhl as I am MHz and don't feel that kind of attention is there right now ......in terms of shrinkage expectations and then to mention Vicks on nails .......mine are crabby right now so off to shops for Vicks and bicarbonate tomorrow ....Thankyou as my mouth is driving me mad xxxxxx ... View more

Hi everyone, it's a roller coaster .......ups and downs but we can do this. I am day 8 2 nd chemo and sometimes full of energy and positivity and then others I can barely want to do anything or pick up the phone if it rings ..... Appetitie is good but my bones and muscles ache today which is new ....anyone else got this? I have sorted out cupboards I haven't looked at since we moved into our house on my high enery moments ...shame I keep wam.walking past the ironing! Wore my new wig yesterday for first time and went out in it today, I kept looking at people wondering if they were looking at me with a wig on ......well done for .2nd chemo today ladies and stay strong. Thinking of u all xx ... View more

Hi SJB, pleased that helped. I just had shower myself and thought for an awful moment that may have been wrong to say. You made me smile on the plug hole thing as that was me two days ago, hair looks more and worse when it's wet and I just keep finding it everywhere hence two days ago I now wear hats too to contain it all and then following my choice yesterday not to do cold cap, I now know it will go so one brush gently in the morning, hair put in bin and then choose a hat. I have bought three Christine headwear ones which are lovely and easy, however feel I want more as now to get dressed for day it involves choosing head gear not blowing drying my hair which annoyed my husband so early every morning!I do hope your feeling okay and I am on an emotional roller coaster myself. My second FEC day 2 and feel okay just now have taken advice from others having caught up with the December angels string to be more vigilant as I haven't considered nail varnish protection or mouth ulcers etc Xx have a good day and I would like to join the Facebook page just not sure how to send you my details I am not too good with technical things. Enjoy your first day of your new look! Xx ... View more

Good morning all, SJB, I now understand your distress and I hope this bit of experience I had yesterday helps. Whilst doing my second chemo in the chair opposite me was a lady and assume her hubby and she seemed very confident whilst I sat there blabbing .....she also had a wonderful head of hair! Through conversation I found out she had breast cancer 9 years ago that was also in her lymphatic system so she is now clear of breast cancer but just as a precautionary comes for treatment every two months to keep it under control and she started doing that a year ago. Of course everyone is different but it was again more I formation about cancer and treatment I didn't know. Another learning I would like to share, to those who have mentioned their next chemo 'if their bloods are ok' .....I went on Tuesday and panicked when I got the white count result back as only being 1.2 and they wanted it to be at least 1.5 for chemo to go ahead and I just want the blaming chemo. I asked if there was anything I can do to raise it and they said no. I did do less on Wednesday and went to bed early as I felt hopeless and yesterday my blood count was 2.6! Apparently it can change all the time so unknown element to me but if you get a low reading hang in there as it may be good on the day. For other ladies there are a lot on FEC but I am triple negative basal cancer so no hormones in mine and still on the same. Haven't read good things on mine outside of this thread so going to stick with you ladies. I will do mastectomy after chemo if it works as I also have a 7cm desk as well as tumour which has to go and my boobs are small! Anyone doing cold cap stick with it, it hasn't worked for me hence my tears of acceptance of that yesterday but it did work totally for my friend xx I work full time, any tips on how you manage work and people reactions. My boss has been great and I have not been to work since 10th December but need to go back next week and albeit I am not in an office every day I still have that first appearance and know I can't keep working at home and hiding away. My wig doesn't look like my own hair but it was nice to read another post where she opened the door (sorry cant see the thread for name now) and her neighbour thought shed had her hair done - how lovely x Sending lots of strength to everyone. Xx still in my bed as feeling sick but other than that not to bad on number 2 chemo ........need to go get some head gear so hoping to feel up to it later today. I also read the book mummy's lump to my 5year old yesterday and she is really col with it all and copying another lady who has named her wig I am going to get my kids to name mine this weekend Xx ... View more

Hi lulu34, Thankyou so much for your response. I am getting better at using this site and seem to not see all replies. Good to hear how you are and how things are for you. I have had my 2 nd chemo and trying to remain positive. My oncologist was very positive about tnbc response to chemo but the more you read .......... Lump hasn't shrunk yet spparantly but hair has gone and sickness not too bad. Keeping everything crossed and happy to share experiences with any ladies out there starting chemo xx ... View more

Hi everyone, happy new year. I have not been online for a while so I hope you don't think my reintroduction rude. I had no electric but then also have felt low and didn't feel good. So after having my second chemo today and crying throughout I felt I needed some comfort from you and slso want to give some too of course x I decided not to do the cold cap for the second time as I am constantly stressing about keeping my hair rather than focusing on beating this cancer so hats on today, getting the kids ready for my new look and I will get rid of the rest of the hair this weekend myself rather tan it falling all around the house xx good luck and best wishes to you all and we will all beat this, each day we will get better. Hope you are happy with me to join in on your December threads xxx ... View more

Hello all, I had my first FEC-t on 12th so building myself up for number 2 on 2nd jan. jonamo - felt for you hearing about your decision on your hair, you are a week ahead of me and I know it's coming for me and my next hurdle. I look normal now for my kids but now it's going to change and I must must get my head around it. I have been ok last few days and my post 10 day bloods were the right blood cell count so I have no appointments now till I see my doctor before next chemo. Feel tied, headaches, runny nose (Thankyou ladies as I was wondering why but now realise it may be a symptom) but get this second wind at night and can't sleep. Met a couple family members this weekend and clearly they were uncomfy in my company. How are you ladies managing family and friend interactions? Told my children now and my son who is 13 is now relaxed with it. Had a bumpy few days but a visit to the chemo nit and then a chat over a very large macdonalds meal did the trick. Good luck to you all and here's to chemo number 2 in a week or so. I do appreciate all your honest insights into your experiences so Thankyou . Sarah x ... View more