Breast Cancer Now Forum

I forgot to say the really good benefit is weight loss! I am a large lady with no will power and no particular desire to exercise and I've managed to lose just under 2 stone since August. All without watching the calories or exercising - brilliant! The oncologist is keeping an eye on it but I'm delighted! 🤣 Its happened because my appetite has decreased and I'm just not eating as much. I could have done that without the Abe,, but I didn't have the willpower! ... View more

Hi I am on the fourth cycle of Abe. No hair loss, but it does seem to have slowed down hair growth. I can live with that, although I can't wait for it to get longer and to have a proper fringe.. I do get very tired, but I think that is more to do with the Letrozole that I also take. When I first started taking them my liver function went down and I had to stop for 10 days or so and then restart. It was fine after that though. The big thing is the state of my bowel movements - I've got obsessed with them! The diarrhoea and stomach cramps were really bad at first but during the second cycle they started to settle a bit. Now I find that I'll get just a few episodes in a month. The issue I have is the notice I get of needing to go. Basically there is none - when I realise I need the loo, I'd better get there straight away, which has resulted in a couple of accidents (sorry if that's TMI!), hence the obsession with the state of my bowels! I keep well topped up with loperamide. Obviously I take it when diarrhoea threatens, but I also take a couple of tablets every few days, just to keep myself nicely bunged up, so to speak! That seems to do the trick. I have also found that cutting back on dairy has helped. I have switched to oat milk in my drinks. I do still use butter, but I have cut back on creamy things. I'll have a little bit of cheese every now and then, but I've found that really rich, creamy ones, like le roulé, will start me off. Sometimes I'll think sod it, I'll take the consequences though! I don't mind the taste of oat milk, the drawback to it is sounding like a pretentious idiot when asking for an oat milk latte in Costa! ... View more

I find that putting on something from BBC Sounds or a podcast on my tablet helps. I focus on that and it stops my mind whizzing round and I relax whilst I listen. I have to be careful what I listen to though - if its too interesting I start getting too involved and stay awake to listen. Not the desired effect at all! I find Round Britain Quiz is perfect.. Its pretty dull so I don't get involved, I never get the answers to the clues, but my body does relax whilst I think about them and I invariably drift off part way through.. There is also a website called Podquiz which works well because each quiz has 4 rounds and then a piece of music before the answers are given.. I find if I'm going to drift off it will often be during the music. I have noise cancelling headphones so I don't disturb my husband. I also have a pillow with a speaker in that I often use instead of the headphones. ... View more

I'd just like to say thank you oh wise women in my computer - this thread has been really enlightening! I sailed through menopause years ago (I'm 63 now) with just a few hot flushes. I thought I was sailing though taking Letrozole too. I started taking it in August, I had a lot of hot flushes to start with, but that settled down and I just have the occasional one now. I have had some other niggles that I was ascribing to age and not having recovered fully from chemo and radiotherapy. Now I realize it could be the Letrozole. I feel a chat with the breast care nurse coming on! I get the ache around my collar bone, luckily only from time to time. I still get really tired, especially if I go out and about. Despite being tired I struggle to sleep at night. The brain fog is so bad my husband has been concerned about Alzheimers! And I have started with the vulval itching. None of these things are as yet so debilitating that they are ruining my quality of life, but I'd rather not get to that point! I don't know why I didn't join the dots and realise what was happening, but thank you all of you! ... View more

Hi Sorry you're having such an uncomfortable time. I think you need to discuss this with your medical team because they will know what to do for the best. My hospital has a cancer care helpline that you can phone for advice, do you have similar? ... View more

Hi @mun4o  Yes, I think you're right about the benefits of abemaciclib alongside letrizole outweighing the downsides. I think I will probably need to be a bit more proactive in finding a combination that works for me. I've tended to just let the hospital get on with it in regards to the chemo. The radiotherapy seems to be starting a bit quicker than the oncologist said that it would. I have my CT assessment tomorrow, I wasn't expecting it until the end of next week. Its probably a good thing though. Good tip about the moisturising. I have Cerave at the moment, but might switch to Aveeno which I know a lot of breast care nurses recommend. I also have some lovely Boots No 7 stuff that my husband got me for Christmas. Its no better than any other moisturiser, but it smells gorgeous! So I slather it on other body parts that don't matter so much! Hope all goes well for you on Thursday. ... View more

Its been helpful reading this thread as I will be starting Letrozole and abemaciclib at some point. I've just finished 5 months of chemo - I sailed through the First half but the last part was tough. Radiotherapy will start in the next 4 weeks and then at some point the letrozole and abemaciclib. I've managed to escape Covid, even though my husband got it and I have been out and about, but I have been careful and mostly avoided large gatherings. Best wishes to everyone. ... View more

Hi I will be starting cycle four on Monday. I feel quite lucky because it hasn't been too bad. I feel really tired while I'm injecting the filgrastin and I can't eat much. I find soup is easiest, so hubby has been busy creating nutritious soups and freezing them so we have a supply in. At the moment, we have roast tomato and red pepper, fennel, celeriac and scotch broth all sitting in the freezer. My skin is very dry on my face and hands, so I spent an enjoyable morning going around the high end beauty concessions collecting moisturiser samples. Its amazing how generous people can be when they see some one who clearly has no hair and is in a bandana - I even got a creme de la mer sample. I then went to Boots and got the Aveeno moisturiser recommended by my breast care nurse for just a few quid! It does the job - and whilst the creme de la mer is very nice, I don't think its worth the £150 price tag! Usually I can reckon on about 10 days of feeling not too bad, so I try to schedule nice things to do during that time. I have to make sure not to overdo it though, I did a say trip to France in cycle 2 and that was way too much. I learned my lesson! Its nice to see this thread becoming more active and I hope everyone else is doing well. ... View more

Aagh! So this coming week is the big week with hospital appointments for various things every day, leading up to my first round of chemo on Friday, and I've just noticed that the site of my mastectomy feels swollen. Ive already had to delay starting the chemo because my husband had covid and then I had a rash. I really hope this doesn't delay it again, but I have a nasty feeling it will. ... View more

@Jaynie23 I'm sure that was a difficult decision to make, but it sounds like the right one for you. You know your body best. I really send you heartfelt best wishes for your journey. @whyte I hope all went well today. Thank you for the tip on wigs from Shein, i shall check them out. @AnnieBee I hope the bone pain and feeling wiped out improve as you go on. I am so much further behind than all of you! My husband having Covid really delayed things. I've had my initial appointment with the oncologist now and I start my first round the week after next. The oncologist was nice, but perhaps shared too much info. He started talking about my prognosis for a 10 year + survival and I wish he hadn't really. I had very deliberately not asked the question up until then and was doing quite a successful job of not thinking about it. Once I knew, even though the figures were not too bad, I couldn't stop thinking about it. My next appointment is to choose a wig, that's next week. I'm quite looking forward to that! I've already had my hair cut short. My hairdresser managed to cut 10 inches off and I've donated that to the Little Princess Trust along with a money donation from my brothers who dared me £100 to have a short back and sides! ... View more

At last! I have my appointment for my initial meeting with the oncologist. Its on Friday. I'm loving the cold cap photographs! I've decided not to use it. I don't really want to deal with the discomfort, even if its only for a bit. I'm going to get my hair cut short and as it is quite long, I'm going to donate the lengths to the Little Princess Trust. @Jaynie23 I would definitely talk to the hospital. @princessleia29 and @whyte  I know this sounds a bit like an old wives tale, but have you tried Refreshers sweets for reflux? I don't know about reflux caused by chemo, but it definitely works for ordinary reflux! @LMH Keep your chin up and look after yourself. ... View more

Oh @Rolene you really have been through the mill! I hope things go a bit more smoothly from here onwards! @LMH I hope you manage to avoid Covid! My husband has just got over it and it wasn't easy arranging separate parts of the house to be in! I've been anxious because I still haven't had my initial consultation with the oncologist yet, let alone actually starting chemo, but I ended up being grateful because at least I didn't have to worry about having a suppressed immune system! I'm hoping the long awaited appointment will be arranged soon. I know my case is being discussed in the Oncology team meeting tomorrow. I was feeling a bit forgotten about, but I asked my GP to contact them to ask what was happening and within 15 minutes of that phone call, the hospital were in touch to ask me to come in today for a quick check up. The redness I had last week turned out to be an infection in the wound site. I've had double strength antibiotics and its more pink than red today. The breast care nurse seemed happy with how its healing and said that she would tell the Oncology team meeting that it was sorted. So I'm feeling much happier now. @louby_lou69 I'm glad all was well last week. Onwards and upwards! ... View more

Hi Had a frustrating day today. I went out in the car and it packed up right in the middle of nowhere, on a small road across moorland, just as it was dusk. I had to wait 3 1/2 hours for the RAC man. I've been finding it hard to cope when things go wrong. But this time I was fine! I've just got back. My husband is now being all sympathetic and concerned and wanting to look after me. I'm lapping it up ... No need to tell him I'm alright really!  Really why I'm posting is because I have a question. The skin around the edge of my scar, the cleavage end, has reddened. I'd say the whole reddened area is maybe 2 or 3 inches across and 2 inches high. Every now and again I get a sharp pain there, but not all the time. The pain feels as if it is inside rather than on the surface. I happened to mention it this morning when I called into my GP's surgery to pick up a prescription and they made an appointment for this evening to see one of the doctors. Of course I had to cancel the appointment because I was stuck with my broken down car. So my question is, I have an appointment with the breast care nurse on Thursday morning, so shall I leave it to be checked then, or shall I ask my GP to check it tomorrow? Opinions welcome! I had forgotten about the Look Good workshops. I'll check those out again. Also, there is a charity called Cancer Support UK, who send out free cancer care kits for cancer patients. I sent off for one and it arrived just before Christmas. I had forgotten about it, so it was a lovely surprise. I got a cloth bag, a well being journal, lip salve, a bottle of hand sanitiser, some sleep spray, a puzzle book, a pen, some tissues, an eye mask and some lemon and ginger herbal tea bags. You'll need the name of your surgeon or oncologist. Go and have a look! ... View more

@Jaynie23 He's not too bad luckily, like having a very bad cold and he gets incredibly tired. I'm keeping my fingers crossed that I don't get it, which sounds a bit selfish! To be honest, I'm a bit annoyed with myself. We've been so careful, but New Years Eve we went to our neighbours' house to celebrate. There were only 3 households there, but while they are not reckless, I know my neighbours are not as careful as we are - they hug people a lot!! ... View more

Just when I thought it couldn't get any worse -  my husband has just tested positive for Covid. I'm negative but I suspect its only a matter of time. I've no idea what the implications are for my treatment. I have a hospital appointment at 9.30 tomorrow morning at the breast clinic to get my seroma drained. The clinic is 45 minutes away so there's no point ringing before we leave to warn them. I think I'll go over and ring them from the car park and ask what they want to do. The seroma was very sore yesterday but it feels a little better today, so if needed I could hang on I think. I would hate to go in and find I had developed it and infected women who are so vulnerable. Despite this set back, I'm feeling more positive today. I'll take that! Somebody mentioned a Tangle Teeze brush and it definitely is more gentle on your hair. My hairdresser also recommended a Wet Brush, I have one of these at the moment and that's good too. Over the last couple of years I seem to shed more hair than I used to, so i do try to be kind to it. I've also found that using sulphate free shampoo helps. @whyte your oncologist sounds brutal! I hope your parents are OK. It must be an additional worry. You are right though, its great to be able to message here when you're feeling down. @Jaynie23 keep messaging and let us know how you're getting on. We can do this!  @princessleia29 thanks for the info about the cold cap. More thinking to do! I've been looking at various  cropped hairstyles and got quite excited about cutting my hair short! What rotten luck having to change your Xmas plans at the last minute. I hope you managed to enjoy it anyway.  @bayleaf I'm glad you're feeling better about the chemo. Fingers crossed for you! ... View more

@NI mum as some one else said earlier on, welcome to the group no one wants to join! @whyte I'm glad I'm not the only one unsure of what to do! Having been slightly more positive yesterday, I've plunged back down today and ended up having a good old cry. I think what's happening is that I can cope and be strong and positive until something goes wrong or not as expected and then it seems as if that one thing is the final straw. So today it was the damn parking ticket machine in town not working properly. I was doing fine until I tried to get my ticket and then I just went to pieces. Tomorrow is my art day - I go to an Art group run by MIND. I've been going for 3 or 4 years now and I love it. I always find that I'm calmer and less stressed when I go, so I'm hoping it will work its magic tomorrow! ... View more

@princessleia29 glad the first one went OK. I'm also glad the cold cap wasn't too bad. I had just about made up my mind not to have it, now I'm wondering. Did it give you a headache? I feel a little bit more positive today. I drove into town by myself for the first time since the operation. It was nice to have a bit of independence! On the other hand, I was at a neighbours house on New Years Eve. Their daughter (who was also there)  tested positive for Covid yesterday and they did today. So now I'm worrying about that. Hubby has a cold but so far we're both testing negative. Fingers crossed! ... View more

Feeling really fed up today. I'm growing another seroma and its sore. I have an appointment for it to be drained on Thursday but it just seems to be coming back all the time. Its nearly a month since the operation and I still feel uncomfortable. I didn't expect to feel right as rain but I thought I would be better than this. And I still don't have a date for my oncologist appointment. Well, ok, I know its only the 2nd of January but I'm feeling unreasonable!  Sorry for the whinging, I needed to vent, ill be more cheerful next time I post, promise! ... View more

Hi @taffytor , it does sound as if we are a bit similar. I finally saw the breast care nurse today. It was a seroma and she drained off 800ml! She said it'll come back so I have another appointment for next Thursday. My surgery was on the 6th, mastectomy and full node clearance. I'm still waiting to see the oncologist too. @louby_lou69 it sounds like you are really going through the mill at the moment trying to get the PICC line in. I love the title of your blog by the way! @Rolene that sounds very handy, living so close to the hospital! We have a 40 minute drive, but most of the way is quite scenic, so I don't mind too much. Quite often we spot wild ponies along the route! Well, I say wild, they are in that they are free range and live out on the hills, but they are quite tame and if you stop they will come to see if you have a treat or snack for them and will usually allow you to stroke them. We quite often stop on the return journey if I am feeling a bit down! ... View more

@Rolene I hope having the line fitted went ok. I'm feeling a bit discombobulated. I know I will be starting the chemo sometime in January, but I don't have any dates yet. I haven't met the oncologist yet either. Id really like to have some sort of plan in my head. On top of that, my chest is feeling very swollen and the skin is tight. I noticed it on Christmas day, but I wasn't sure whether I was imagining it. On Boxing Day I knew I wasn't. I couldn't get hold of the breast care nurse because of it being Christmas. I finally managed to talk to somebody in surgical admissions yesterday, they basically said not to worry if I was feeling fine in myself, which I am, and to talk to the breast care nurse today. @lexy I've pretty much decided against the cold cap as well. I'm not sure I want the extra discomfort. I think your plan to enjoy Christmas and not think about chemo too much was absolutely the right one!  xx ... View more