Breast Cancer Now Forum

Hello All I found this thread so reassuring when I first was starting chemo back in Nov 2020. One year on and I just wanted to hopefully reassure others too about to start their treatment. I was diagnosed Oct 2020 at 39yrs - triple negative, right breast, 3mm lump, caught early so fortunately hadn’t spread to nodes. I then found out I was BRCA 1. I was on EC initially and then switched to carboplatin/paclitaxel. EC for me was much harder to deal with than carbo/pac so for anyone worrying about switching after Christmas I hope you will also find it to be much much easier. Other than chemo mouth and low energy, I actually had very little side effects compared to EC. I finished chemo early April and had my double mastectomy mid May (with immediate recon) and was told there was no evidence of cancer around late May. Fast forward from June until now, my life really is much more “normal”, now - back to parenting, working, socialising etc and it’s hard to comprehend all that has happened this past year. I still have to have my ovaries/Fallopian tubes removed as a preventative measure but my surgeon has advised me to wait another year or so as I’m only just 40. I cold capped and am glad I persevered with it because despite losing 70% of my hair I still managed to keep some length so it now looks relatively long. If anyone has any questions, please let me know. You’re all amazing & stronger than you know. Keep going and we’re all here for you x ... View more

Hello Hope you're all doing ok ladies.  I joined this forum in Nov 2020 as started chemo on 16th November last year.  I wanted to just write a message to everyone to wish you all luck and to hopefully give you a positive post to read and show you support as obviously I know exactly how you're feeling right now. In a nutshell, I was diagnosed last October - triple negative and then turned out to be BRCA 1 positive.  I had EC until Christmas and switched to Carboplatin/Paclitaxel in the new year.  Finished chemo in the April, had a double mastectomy with immediate reconstruction in the May and was soon after told that there was no evidence of cancer.  I am yet to have my ovaries/Fallopian tubes removed but my surgeon has advised me to wait another year or so as it's preventative surgery rather than essential.   It's hard to quite comprehend how much has happened this last year but one thing I know is that you/we are stronger than you know.  We're incredible in fact and you can all do this - we have no other choice, right?  The people I met along the way were all on their own unique path but all amazing, strong and inspiring.  I left the hospital every week full of gratitude for many things and I think remaining positive (despite feeling groggy and grim some days) this absolutely helped me.   I cold capped so if anyone has any questions about that, please let me know.  If anyone has questions about the drugs and side effects etc of EC, Carboplatin/Paclitaxel, please let me know.  One thing I'll say is, everyone responds differently.  I had two surprisingly good cycles on EC and two not so easy.  But, I never vomited and I never needed to stay in bed so I was much more fortunate than others.  I recommend taking gaviscon tablets before bedtime and after an evening meal when on EC because sometimes when I had bad heartburn, it tricked me into thinking I felt sick when actually it was just heart burn.  Some days I felt like a zombie and a heaviness in my sinuses, this is definitely a side effect of the EC.  I can remember worrying about switching to Carboplatin in the New Year but actually I found it to be much easier to cope with and come February I was feeling relatively "normal" apart from energy being a little zapped on some days and tingling in my toes.  Food-wise, plain foods and lemon flavoured things were always nicest when the chemo-mouth hit.  Many of my favourite foods tasted pretty grim 2-4 days after each chemo round however I found that the day before chemo I could cook a nice meal and really appreciate the flavour.  Monday nights in my house became "dinner date" night where my husband and I would cook a proper meal (beef brisket, Yorkshire pudding, potatoes and carrots for some reason was what I craved and enjoyed!). Try and see each cycle as a new week and try not to fear it - very hard I know.  I found each cycle with EC very different so just take each day at a time.  Ask for help if you can and try and communicate how you're feeling so people can offer their support, listen or give you space.  I think mentally I found the prospect of a New Year a real help, knowing that chemo would be finished by the Spring.  You'll perhaps find that after the exhaustion of Christmas in general, come January you'll be raring to crack on and get to the end of treatment with a newfound energy. I could write and write and write, but I just wanted to let you all know I'm thinking of you and that as hard as it is to imagine, this time next year (or even by next Summer) you will be in such a different place and mindset.  The next 6 months are of course a huge challenge mentally and physically. But you will do it. And before you know it, you will be typing some message of encouragement to others just like I am (trying to do anyway). Sending you lots of love, strength, hugs and support. Think of you x ... View more

Hi All Hope everyone is doing ok? Wow, a year since we started treatment... what a year.  I haven't read too many posts of late, apologies but hope this finds everyone doing well. I finished treatment in April, had my double mastectomy (and reconstruction) in May and was told no evidence of cancer had been found so life since then has slowly been returning to "normal" whatever that is these days!  As I'm triple negative and BRCA 1 I do still need to have ovaries/Fallopian tubes removed but my surgeon said to wait another 1-2 years for that as I not turned 40 this Summer.  I have an appointment this month with my surgeon to deflate my temporary implants slightly and am hoping to hear when it's likely I can switch to gel implants. Since finishing treatment I've fortunately not been on any medication/injections as I'm triple negative so I would say since July I've been feeling 95% myself again.  Only complaints are heavier legs and numbness in toes which hasn't really changed since April.  Otherwise all ok!  I cold capped so my hair is perhaps a little longer than others who started treatment a year ago.  Not my best hair style I have to say, but it's getting there! I returned to work in September starting my own new company and work is going well.  We've been having building work done at our house since October which should hopefully be ready in time for Christmas and my husband and kiddies are happy and well so I am incredibly grateful indeed. Am very thankful to the lovely doctors and nurses that treated and cared for us, thankful for forums like this and thankful to be sat here typing a message with a much calmer, happier mind than one year ago. Hope this finds everyone doing well - I haven't really read all the recent month's posts so for those that are still facing difficulties and attending hospital appointments, am sending you lots of love. Well done everyone! x   ... View more

Happy Saturday everyone... Just on to share some positive news. I have two remaining weekly sessions of paclitaxel/carboplatin chemo to go and so had an ultrasound on Thursday. The radiologist was really happy as couldn’t detect any lump in my right breast whatsoever and confirmed that my armpit and other breast were also still clear - Phew! So - two more chemo sessions to go and come 7th April I’ll be finished with treatment hurrah.  I have my consultation with my surgeon scheduled for this Tuesday so will get my surgery date and more info then.  As far as I know I’ll be having a double mastectomy and fingers crossed immediate reconstruction at the same time. No radiotherapy required. They’ll obviously look at the cells from the skin tissue removed and confirm whether any cancer was still detected so I will eagerly/anxiously be anticipating that news but today I’m feeling really lucky, grateful and hopeful. I also feel very fortunate that my surgery plan is relatively straight forward compared to others. Hope everyone is doing ok this week and sending lots of positivity your way x ... View more

Hi All Hope everyone is doing ok and having a good week. Been a while since I’ve posted but do read everyone’s updates. I have three more weekly sessions of Paclitaxel/Carboplatin to go, due to finish 7th April (having been delayed a week back in Feb due to low platelet count), can’t wait. Although in all honesty, I’ve been relatively side effect free since February. This combo has much more tolerable than the dreaded EC! I do have tingling/pins and needles in my feet but not yet to the point where it’s problematic. Just a strange sensation and annoying at night time. A combination of walking, Epsom salt baths and my husband massaging them seem to help but a little concerned it will get worse these next three weeks. I have an ultrasound this Thursday and then my consultation with the surgeon next Tue.  Will be going in hoping to confirm that I’ll have have a double mastectomy with immediate reconstruction (implants) in early May - I’m triple negative and BRCA 1 positive.  Did anyone take a relative to their surgery consultation? What was involved? In case anyone a little behind us (Dec/Jan starters) is reading, just thought I’d mention that I’m still cold capping. It hasn’t been as successful as I’d hoped as I’ve lost approx 75% of my hair but I have persevered regardless as am hoping it’ll encourage hair regrowth come April 7th when I finish treatment. Personally, I still feel better having some hair than none at all. Never felt ready or got to the point where I was wanting to shave it off. I started to wear a wig when out and about since early March, up until then a beanie was fine. Have read that taking biotin gummies after treatment finishes are great for hair regrowth - does anyone recommend a particular brand? Well done everyone for nearing the end of this leg of the journey! November seems like a lifetime ago now.  Happy Tuesday to you all x   ... View more

Hello, I’m currently undergoing chemotherapy for triple negative/BRCA1 breast cancer. I finish chemo late March and will be having a double mastectomy (and also ovaries/Fallopian tubes removed). I have critical illness cover with Royal London, do you know what kind of payout they would likely offer?  ... View more

Hello All, hope everyone is doing ok. I’m from the November starters group so a little behind all of you but wondered whether I could see how those that were on EC followed by Paclitaxel/Carboplatin have coped?  I’ve had 4 x fortnightly rounds of Acc-EC before Jan and now I’ve done 3 out of 12 weekly rounds of Paclitaxel/Carboplatin. All going to plan my last round will be the last day in March. I met a lady at my hospital last week who is triple negative and BRCA 1 positive (same as me) and she’s about 4 weeks ahead of me. She said she was fine on the PAC/Carb until about week 5 and then became bed bound for days and days due to numbness and pain - has worried me a little as up until then I’ve been thinking/hoping this drug combo is much more tolerable.  Any insight would be great!! After my chemo finishes I will have April off and then most likely a double mastectomy in May. Would opt for immediate reconstruction but doubt that will be possible due to the current climate and waiting times, but you never know. If any of you do get offered immediate recon, please let me know.  Lastly, well done everyone for finishing your chemo, must be a great feeling - wishing you all luck for the next bit! x   ... View more

Hi ElleGee Good luck with your 3rd session, not ideal being on Christmas Eve but fingers crossed you get a good sleep and are feeling good the following day. My 3rd session was yesterday at 9:30am so home by 1:30pm. I normally feel rubbish by 4pm but having napped from 2:00-3:00 and taken an extra Domperidone antisickness tablet plus 2 paracetamols at 4 (and a heartburn tablet) I didn’t get the groggy/headache or any nausea. I just had a burning acid digestion feeling so had gavascon before bed and slept ok. Without jumping the gun, it’s been the best chemo day so far. Just letting you know so you’re not dreading Christmas Day. I had been a bit fearful that this session would be the worst but it’s been the best perhaps thanks to tweaking painkillers and antisickness. Christmas angels being kind to us all I hope! I have my 4th EC session on 30 Dec and then I move onto Paclitaxel/Carboplatin (am triple negative) for 12 weekly sessions from 13 Jan. Have heard the side effects are more on the lines of aches and pains rather than nausea so will see how that goes. I feel like I’ve gotten away lightly with the EC side effects so hoping for the same with the new drug. Happy Friday to everyone x ... View more

Thanks for your reply ElleGee (and everyone else too with wig suggestions etc), am really grateful for your own stories and it has helped me gain perspective so am feeling much clearer about things. Totally agree that I am fortunate to have the option to reduce risk later down the line by having preventative surgery now and always have said “whatever it takes” so will just keep on keeping on and do as am told! I do see the positive in most situations, just hard sometimes on this particular adventure but that’s why this forum is great - it really does help you to not feel alone and also be thankful.  Appreciate the wig suggestions, shall take a look tomorrow online.  Have lovely weekends everyone x ... View more

Hi All Happy Friday and hope you have good weekends. I’ve not had the best week as found out on Monday that I’m BRCA 1 positive meaning my surgery next year will most likely now need to be double mastectomy plus removal of ovaries/fillipuan tubes if wanting to reduce risk of further cancer appearing/reoccurring. Was feeling so positive up until that point as physically I’ve been coping petty well with side effects plus I can feel that the lump has shrunk (to the point where I can’t really find it now). So I’m triple negative and BRCA 1 which if googling etc (yes I know I shouldn’t) is pretty scary because statistics are daunting. Urgh. I’m usually very rational and calm about things and my philosophy is to not sweat the small stuff but this isn’t small stuff so finding it hard as just not used to worrying about things. Despite cold capping I have been losing hair a fair bit but not noticeable to anyone e else as yet. Another thing upsetting me this week. I’m working from home and have two kiddies under five so it’s just been a bit too much this week. Husband is brilliant and work too plus family/friends are helping out where needed. Just need a weekend to catch up on sleep I think. Next chemo on Wed 16th Dec, assuming I’ll feel ok for the Christmas period which am very grateful for. Worried the cold cap  won’t work meaning I may be bald come Christmas Day and with no wig so need to get some plan in place. How long does it take to arrange a wig? Sorry to be down! I know I’ll feel better come the weekend, it just feels like it’s been a long week. Lots of love to all x ... View more

Hi All Re: wrists - I did get heavy stiff wrists the evening of my chemo sessions actually but wasn’t causing me too much discomfort. I have a PICC line - I think this does help reduce any aches. I had my second round of Acc-EC yesterday and they gave me an extra Domperidone tablet while at the hospital along with some heartburn relief capsules to have and this combo seemed to work well. I got home about 1:30pm (chemo at 9am) and felt very groggy with a headache and some heartburn from 4:30-9:00pm but did actually sleep no nausea this time. Have woken up feeling a little hungover but managed to have breakfast and am drinking my water so no complaints so far. Did the cold cap again so I guess I’ll find out in the next 10 days how successful it’s been as today is day 15 since my first session (am having EC fortnightly). For those that are cold capping too, when did you find most of your hair first started shedding? Hope everyone else coping ok and hope you have lovely weekends. Off to buy a Christmas tree (along with everyone else I imagine!!) x ... View more

Hello  Just wondering how you’re feeling after EC round 2, hopefully you’ve managed to have a nice weekend and rested up.  I have my second session this Wednesday so off to have bloods checked tomorrow. Would you say this session has mirrored your last session symptom-wise? Or was it harder/easier the first few days after chemo? Are you still persevering with the cold cap? I know you mentioned your hair has thinned - what day did this start happening? I’m currently 11 days after my first session so anticipating some hair loss in the next 7 days - fun and games! Hope your little boy’s Covid test goes ok! x ... View more

Hi there Happy Saturday to everyone and hope you have a nice weekend. I had my first EC chemo session on Wednesday. Felt very ropey from 10pm and was wide awake feeling sick until 4am. Felt pretty normal since then though. I think I made the mistake of eating dinner (my chemo finished at 5:00pm and I ate at 7:00pm). I wore the cold cap which surprisingly bearable (I do have thick hair) but am now worried whether it worked properly! There was definitely a slight gap in the top of the cap where it wasn’t the perfect fit so a little nervous re: the hair. I too need to wash it - it’s now 3 days since my session so may do it tomorrow, thinking I’ll just rinse it in the cool bath water If I can navigate the picc line arm cover! Anyway, sending everyone my best wishes and good luck to everyone gearing up to another treatment next week. I have a week off and then am back 2nd December. x ... View more

Hello Hope you’re doing well.  I just wondered how your cold cap experience is going and if you have any further tips? I start chemo this Wednesday and really want to do as much as I can to make it work! Thanks, Fi    ... View more

Wishing you luck for tomorrow!x ... View more

Hello! Hope you’re doing well. I’m due to start chemo this Wednesday  (Accelerated EC fortnightly for 2 months and then weekly Carboplatin/Paclitaxel for 3 months).  I plan to use the cold cap too, how are you getting on with it, any tips? Am I ok to bring in my own conditioner do you think? Should I go in with wet hair? Lots of questions!  ... View more

Hello - I just wanted to see how you’ve been getting on with your first round of chemo? Hope you’re feeling well and not too shattered. I’m due to start this Wednesday so a few weeks behind you. I too have two kiddies and just don’t know what I will be able/unable to do these next few months. I guess you just have to take each day and week as it comes. Anyway, hope you’re doing ok x ... View more

These posts are really reassuring to read, thank you ladies. I’m 39 and have two little ones under 5 and was diagnosed late October with triple negative breast cancer - I’m due to start chemo this Wednesday. It’s so good to hear from people a few years down the line and know that you’re doing well and healthy. Did anyone use a cold cap and have success? I’m going to give it a try and could do with some tips! x ... View more

Hello, I’m due to start chemo this Wednesday and will be using the cold cap. I just wondered if it ended up working for you and if you have any tips? I hope you’re doing well x ... View more