Breast Cancer Now Forum

@Poacher65  I get what you are saying about the 30th feeling like D DAY.  It is terrifying, I have to try really hard not to let the fear take over, I try to stay rational and away from Dr Google! Remember more women survive it than don’t and hold on to the fact you are only halfway through treatment and already you have positive results and now the treatment will change and hopefully attack from another side.  I hope you have good appts on 30th and that 2nd goes smoothly for you xx ... View more

Hi how is everyone doing? I hope everything is running as smoothly as it can be and with minimal SE’s. @Karden it must have been so hard to find you had to have more chemo and lose your hair for a second time. It’s easy to be flippant and say it’ll grow back but when in this situation it means so much more than just losing hair. Our hair is part of who we are and how we present ourselves to the world and having lost it once it must have felt like going backwards. However like you say the big picture is hopefully a life without cancer in it and if this is what it takes then we have no choice but to go through this. It’s hard but soon we will all be on the road to recovery.  @Poacher65 When do you start with Docetaxol? Good luck I hope it is ok for you.  @Love running how were your midsummer celebrations? I hope you are enjoying your break away and your ‘spa’ treatment. I had my spa this morning, it is nice to have the plaster off for a few minutes. Your description of other peoples reaction to cancer was so accurate and well written. I think we all have those shower and sunglasses moments.  Cauliflower pizza?! I’m with your kids on that one! 😂 Since being diagnosed our family have gone for a predominantly plant based diet and I have enjoyed cooking and eating lots of new recipes. Although I am not a very good vegan as I am having a fillet steak every week! It is medicinal though, as the carboplatins that I have 3 weekly commonly cause anaemia so the steak is my effort at trying to combat that. We will see if it works. I am also having iron tablets and weetabix every morning.  Most Brits can’t criticise other nations for not speaking another language as we tend to rely on others speaking English! 😂 @Coastal I’m sorry to hear you have been feeling poorly and low, you have a lot to deal with at the moment. Glad you are feeling better and that the LGFB course helped. I hope your daughters exams went well.  I did the moving forward course last time and it was very helpful and as a group we have all kept in contact and meet up regularly, well we did before the pandemic! I recommend it.  We went to my parents at the weekend, mum was in bed the whole time but I don’t seem to stop when I’m there. It is very tiring and emotionally draining but I don’t think she has much longer so we will go back again this weekend so I can spend as much time with her as possible.  On a lighter note I enjoyed my birthday on Monday. My husband booked lunch at a restaurant in Swansea that overlooks the beach. There were a few paddleboarders and swimmers in the sea to watch and although it was a bit breezy it was just about warm enough to sit outside. I find it calming being by the sea. In the evening my husband, daughter and I did Jay’s quiz from Saturday on YouTube which was fun.  I had my bloods today and have chemo tomorrow. It will be my third of this new weekly regime and so far I feel I am coping ok, although after this one I still have 9 left so a way to go yet.  Sending good vibes to everyone xx ... View more

@Poacher65  I used to struggle after the injection but this time haven’t found them so bad, my specialist nurse said they have changed the brand they used in 2018 and they find people get less achey with it. Maybe you could mention it to your team?  Ive recently moved onto weekly paclitaxel  and completely messed up the injections last week, I was supposed to have 3 but only had one. I was really pleased to find out that my bloods came back really well. I will be having all 3 this week! X ... View more

@Poacher65  In 2018 I had 2xFEC and 4x Docetaxol with herceptin and Perjeta. I didn’t have any bad problems, in fact I preferred it to FEC as I had no sickness/nausea. I did have diarrhoea but it think that was caused by Perjeta or Herceptin. By the end of the treatment my finger tips had slight neuropathy but on a plus side my hair started to grow back by my last cycle. I painted my nails in a dark colour I don’t know if it made a difference but they were fine just a bit brittle and had stripes on them. As you say we are all different and our bodies cope differently, I think the best advice is to take it as it comes but it definitely isn’t awful for everyone. X ... View more

@TicTok  I don’t drink and alcohol free lager is really low cal and actually very difficult to tell the difference between the real thing. Bavaria is my favourite as it’s not too hoppy. Also some fizzy ‘wines’ are low cal although you have to serve them really cold, Freiznent is a good one (not sure of the spelling!) If you fancy something that tastes like a ‘grown up’ drink you could try seedlip or other non alcohol spirits and then cal content depends what you mix them with. I serve them in the big round Gin glasses and sometimes add blueberries and tonic water or flavoured tonics. Drink as much as you like and the only hangover you’ll get will be from Chemo!  @Purpledaze  I’m with you anything that gets you through. At the beginning of chemo I started bulk buying loo roll to use as a measurement of time, as we use it up I am closer to the end of treatment. Now how weird is that? I definitely worried about myself then. I didn’t do it when the pandemic hit I promise!  @noodledoodle and anyone else who is moving to weekly paclitaxel, I am pleased to report after yesterday’s treatment I am feeling good. It is much gentler than FEC and the Carboplatins so if I can have two weeks of this in between then I’ll take it!  We are going to visit my mum this weekend. She lives 3 hours away so I haven’t seen her for 2 weeks and I think she has become much weaker. My girls are both going to pop in on Sunday but I think that will be the last time they see her as I don’t want them to remember her like this. She has always been so active. I have started to think about her funeral, which in some ways feels horrible as she is still here but it is helping me. I am a very pragmatic person so to think about it now has made me realise how important it is to me. I am going to write her eulogy because I want it to be personal and I want everyone there to know how kind and supportive she was, what she loved in life and her lovely sense of humour. I know I want to have yellow roses as she loves them and yellow is her favourite colour. I would like to play somewhere only we know by Keane as she used to say it reminded her of fun times she had with me and my girls when they were small.  Thanks for letting me spill all of this out here, it helps to share it and there aren’t many people I can say this to. Xx ... View more

@TicTok  At least the decision is made for you now, I think that must be the hardest part. It is demoralising when your hair is falling out. Another step forward x @Sammy73 i had full node clearance last time and will have it again this time. You are right that is what takes time to heal. I was lucky last time and it all went pretty smoothly, I was driving more or less straight away. 8 weeks without driving must have been so frustrating, good to hear you are on the mend now. I love what you say about out with the old and in with the new! It does make sense to only have one op. I don’t think that will be an option here, I think whatever replacement surgery you opt for there is a minimum wait of 18months. Will you have rads after chemo? Does that affect the implants? I’m not sure what type of reconstruction I will go for but I think I will go smaller, possible a B cup, I’m DD now and they do get on my nerves a bit. Well actually quite a lot now with all the trouble they have caused. I think it’s probably a bit like hair loss, I think I’m going to be ok about losing them but when it actually happens I will probably grieve over the loss. But hey ho, problem for another day. X ... View more

@Bex27 I love your picture, it sounds like you had a great trip away that has rejuvenated you for the rest of your treatment. Fab weather too!  I hope that your hair falling out lessens over the next week. Shorter hair is definitely easier to manage when using the cold cap. Also I only wash my hair once a week and make sure I don’t rough dry it as that can cause tangling and more hair loss.  I hadn’t though about it like that but you are right crying when someone is listening as opposed to trying to stop you crying or you feeling that you should stop is actually quite liberating. Whether it is talking or time I feel a little stronger now.  Thanks again to all of you for offering to help, support and sympathise, it’s very much appreciated.  Today I am having number 2 of 12, so another one ticked off. The weeklies seem gentler so I’m hoping to walk as normal in the morning.   Another step closer to recovery xx ... View more

@Sammy73 @Great that you are able to embrace your hair and as you say go with the flow. You’re right our bodies go through so many changes and it can be difficult to adjust to. I am looking at having a double mastectomy and won’t have a rebuild for at least 2 years maybe longer. I am telling myself I will be able to rock my new flat look, I’m tall and thinish. I tried my new found confidence on my daughter yesterday saying I think I’ll rock the new look but I think she found it a step too far when I started comparing myself to Kate Moss, admittedly I had just been complaining about my wobbly tummy. What can I say I’m 50, have had two babies maybe Kate Moss is a push but I’m still staying positive about my ‘new look’ although I’m sure I will have plenty of tears before and  after the op. We will get there. x ... View more

@TicTok  awww ticktok I can only repeat what I have said to Poacher, these are tough times and this is the place to share. I hope your next cycle goes well and that you are soon feeling more able to cope.  I love that there are so many positive ladies here talking about trips away and living life, when I am down I try to draw on their positivity and hope that I will be able to do the same for others. X ... View more

@Poacher65  don’t apologise for your ‘negativity’ that is exactly what this place is for. If you can’t say how you feel here then what’s the point. Yes it probably is completely normal to feel sad for the pain your family are going through but knowing it’s normal doesn’t make it easier. My last cancer was whilst my daughter was going through her a levels and the guilt I felt for ‘putting her through this’ was awful. However it’s not something we have chosen to do and our families know this. Unfortunately there are lots of ups and downs whilst going through this and all I can advise is appreciate and enjoy the ups when you feel them and get through the lows best you can. At the end of treatment you will reflect back on all you have been through and will be amazed by your strength. X ... View more

@Poacher65 @Congratulaions on your scan, all good news should be celebrated and it is great that your treatment is having the desired effect. Like you say hopefully the next half of treatment it will shrink even more. I am also having chemo as a first treatment and do wish sometimes that I had been able to have surgery first. I think having it still inside my body does mess with my mind but my oncologist says this is the best way for me as I’m sure it is for you. X @Love running Not an imposter at all! Thanks for sharing your story, you certainly put me to shame with your language skills. I have been learning Spanish for 2 years but seem to forget it all between lessons! You are right about this forum, I used it 3 years ago and made some amazingly supportive friends who I am still in regular contact with and I have to say I am so grateful that I found this thread as everyone here is so helpful, supportive and inspiring. I love to hear what everyone is doing to get themselves through all of this, it really spurs me on.  Your confession about not telling your mum seems perfectly sensible. As you say when you do see her you will have good news to share.  The longest day celebrations sound amazing and one day I will get to Sweden for my birthday and will certainly look you up for a tour of Stockholm! When I finished treatment last time we did lots of travelling to places we had talked about for a long time, so Sweden is high on the list when I finish this time! X ... View more

Thank you everyone for your kinds comments regarding my mum. I went to the psychologist and spent the hour crying as expected but do feel slightly better for it.  I agree it is a very personal thing telling people about your diagnosis. Last time we told everyone but this time I got quite protective about who knows and we have told far fewer people. I guess with the lockdown it has been easier to legitimately avoid people. Although hearing about everyone’s trips and events it dos make me think that perhaps we should see a few more friends now but with what’s happening to mum there isn’t much opportunity.  @noodledoodle I have also had genetic testing as TN. It came back negative which I understand most do. I had mixed feelings as I have 2 daughters, so relieved that I won’t have passed on those genes to them however I think there are targeted drugs that have just been approved for BRACA, I think targeted drugs are a good way forward with cancer.   @Bex27 Glad you made a quick recovery from your vaccination and were able to make a trip to Devon, how lovely to have that time to enjoy with friends. Nice to feel rejuvenated. I have cold capped too. I did it last time and there are pros and cons. When I did it last time I did end up with quite a wide parting, but my hair was longer then now I have a pixie cut and it has worked much better. I have still lost a fair amount of hair but most people wouldn’t notice and I’ve had 3 rounds of FEC. Hair loss dos go in cycles and seems to be worse on the 3rd week. I like that I can walk down the street and no one knows and I don’t have to wear a wig but it is a very individual decision.  xx ... View more

@Baroness @welcome to the group, I’ve only recently joined too and have to say there are a great group of ladies here.  @Love running well done for running through, I know exactly what you mean about your brain being at peace when running. Nothing beats running and listening to your body and just going with it. There isn’t a great deal of encouragement for exercising through chemo here, not that I have found anyway but I have also read articles about it boosting your immune system and reducing risk of infection, even post op. Although I havent continued to run I go for a walk every morning of between 3-6 miles and I live in Wales so there are lots of hills around to get the heart pumping. I go with friends and I find the chatter lifts me up most days and some days we are out all morning. Are you Swedish or living in Sweden? It is a country that is on my list to visit, my birthday is 21st June and I know you celebrate the longest day there so maybe I will go next year.  @noodledoodle my first carboplatin seems to have gone ok, less SE’s than FEC. Although I think going in every week for 12 weeks is going to get draining, especially as it is bloods Wednesday, chemo Thursday. I think you said you are having 9 paclitaxel and I am a cycle ahead so we will probably finish about the same time. I will then have surgery which at this point in time looks like a double mastectomy because of having BC 3 years ago.  I have an appointment with the psychologist at my cancer centre today. The appointment was made a little while ago as I have a lot going on. I was diagnosed in March and around that time my mum became ill. She has been diagnosed with terminal cancer, bowel and ovarian and has been given weeks to live. I am finding it so hard dealing with what I am going through and trying to do what I can for her. Unfortunately she lives 3hours drive away so that adds complications. The psychologist isn’t going to know what’s hit them when I open the floodgates later.  How's everyone else doing? Anyone finding nice things to do in this lovely weather? I hope everyone is coping ok mentally and physically, big hugs to everyone here xx ... View more

Hi Poacher I have definitely felt things going on in my affected breast since treatment. My brain swings from it’s the treatment shrinking it to its growing again! Depending on how irrational I’m feeling.  I guess there is a lot going on inside our bodies at the moment and it is difficult to tell if it is a ‘good pain’ or not. If you are worried I would mention it at your next meeting with your oncologist I’m sure they will be able to put your mind at ease.  Michelle x ... View more

Thanks @Karden.  I have a husband like that, I think he is secretly pleased he isn’t able to come into chemo because of COVID, he can’t stand needles of any kind, I’m surprised he didn’t faint when he had his vaccinations! 😂 ... View more

Hello all, hope everyone is having a good day.  I’m pleased to report I have had my first of the new regime, so one down 11 to go! More good news despite my oncologist saying it can cause bad sickness I don’t seem to have any sickness. I have taken the same anti sickness meds that I took on FEC but still felt nauseous on FEC but, touch wood, sickness fine.  However it didn’t exactly run smoothly yesterday I arrived at 9:15, by 10 still no treatment, but did have reflexology which was lovely. At 10:30 they explained that my bloods had gone to another hospital by mistake and they were waiting for the results. Thankfully they received them at 12 and I left at 3:15, it was a long day especially as I’ll be back again on Thursday, but in the big scheme of things there are worse things that can happen!  @noodledoodle I hope you have similar results with your SE’s from this treatment. Did your oncologist mention the high risk of anaemia and blood transfusion? My oncologist likes to give me the worst case scenario on everything! I’m not looking forward to feeling the fatigue but one day and one cycle at a time.  Yes on a plus let’s  hope the carboplatins kick our unwanted breast guests out! I have surgery next and spoke to my oncologist yesterday about a double mastectomy and she said that is definitely an option that needs to be discussed with the surgeons. I want to have it because I just dread the thought of going through this for a third time, but also a double mastectomy is a big decision . I have a few weeks to think about it. They don’t do recon straight away here I think it is at least 18months but I think I might wait even longer.  @TicTok I hope your white blood cells come back thick and fast for you ready for your next cycle. @Karden How nice to get away for a break. When I had BC in 2018 my OH and I went to San Sebastián after my chemo and surgery. We had an unexpected warm day so had the afternoon on the beach.  I remember going for a swim in the sea, it was freezing cold but I just felt so alive after an awful 6months. Also the swimming felt great on my arm after having my nodes removed, I highly recommend if our pools ever open or if it is warm enough for the sea! I am focused on a break in October but will like be closer to home than in 2018! I hope your chemo ran smoothly for you yesterday and that your are not suffering with too many SE’s. Hopefully your trip will have helped boost your white blood cells and although I am a wimp when it comes to the injection and get my daughter to do it for me it actually doesn’t hurt at all.  Take care all Michelle x ... View more

Hi @Love running  thank you for the welcome. I am so impressed that you are still training! I am also a runner but stopped when I was diagnosed. I am walking a lot and as I live in Wales there are lots of hills to climb! How far are you running? Keep it up I’m sure fitness helps you through.  The low that follows steroids is awful isn’t it? Even once you have identified that’s what is causing the downer your emotions still go all over the place. At least you know it will only last a short while.  Michelle xx ... View more

Thanks for such a warm welcome, it’s very much appreciated.  I have had the PICC fitted and it ran pretty smoothly so I start my new regime tomorrow. My oncologist has made it sound like I’m not going to be able to get out of bed due to fatigue caused by the carboplatin over the next few months! I guess I’ll just have to wait and see.  Coffee and cake I had minimal SE’s last time and still had a complete response to chemo so hopefully you will have the same. Just another of the the irrational thoughts that go through our minds these days!!  Thanks for the Limbo recommendation Coastal, i have been given a waterproof sleeve which I will give a go but no one measured my arm so I hope it will be tight enough, if not I will be on Amazon.  Michelle xx ... View more

Hello May Ladies I was wondering if I could join your group as you all seem quite active on the thread and quite honestly I could do with all the support I can get!  This is my story so far. In 2018 I was diagnosed with HER2+ BC in my right breast. It was a devastating shock as it is for everyone but I got on with it. Chemo with herceptin and Perjeta, which gave a complete response, followed by a lumpectomy and rads. It took me a little while to mentally recover but actually I was jogging along nicely, appreciating every second of life, even in lockdown! Then in March I went for my routine annual mammogram and to my complete and utter shock they found cancer in my left breast. This time it is TN.  So I started chemo in April, so far I have had 3 FEC and on Thursday I start weekly paclitaxel with 3 weekly carboplatin. Is anyone else on this regime? I don’t know yet if this is for 9 or 12 weeks but I had a halfway ultrasound and the tumour had stopped growing but hadn’t really shrunk much. I also have node involvement and they had shrunk a bit so that was good news. I am having having a PICC line put in today which I haven’t had before but my veins are starting to ache and as I’m going on to weekly it seems like a good idea, although I’m a bit nervous.  I read comments that a few of you wrote about being scared about the future. I realise I’m not the best example as I’m back here again however I can say that I did move on cancer and really embraced life more than ever. Hopefully I will again and so will everyone here.  Sending love to all  Michelle x ... View more

Hi Shi, unfortunately I’m not eligible for any trials because of having BC in 2018, my oncologist checked that out early on. The carboplatins are a fairly new development in TN treatment and seemed to show good fairly good results in trials so hopefully it will do the trick for me. Thanks for your support Shi it’s really appreciated. xx ... View more