Breast Cancer Now Forum

Hi All It's interesting to hear your thoughts on Capecitabine, as I may be on that next. I'm TNBC with liver mets, and had 7 cycles of Gemcarbo as first line defence.  They stopped in February and my two CT scans during this period had shown reductions in breast and liver tumours.  However, since stopping GemCarbo, I can feel it's all starting to grow again and it's extremely upsetting, as you all know. I'm taking painkillers at the moment as I seem to be getting constant pain in my upper back.  It never ends, does it?  You need a rest from the chemo but then your body says "Oh no, I'm going to make you suffer" so when you think you can have a rest and recuperate a bit and feel "normal", it just doesn't happen. I don't get to see my onc until mid April and I'm hoping she'll put me onto Cape tablets straight away.  She says she's got several ladies who have been on this for years, so fingers crossed  🤞   I just want to be well enough to go away in a couple of weeks time with my family. I've read that the most common side effects with Cape seem to be issues with the feet and hands, but is there anything else?  I had hair thinning on GemCarbo but very little else. Wishing you all the very best with your scan results, ladies. Fiona x ... View more

Evening ladies Well this is the first time I've looked at this thread and I'm encouraged by your optimism.  I have secondary tnbc which has recurred in the same place as primary diagnosis in 2018 and now spread to the liver.  Options for me are limited because I'm triple negative but reading your posts has given me a little ray of hope, if not necessarily for me,but for others.  This cancer sh*t really is crap, isn't it? But knowing you're all there to help is amazing I've had 6 rounds of GemCarbo since my secondary DX, which started in July. My wbc/neutrophils take at least 4 weeks to recover hence why its taken so much longer to complete 6 cycles (I never had this problem first time round so is that an indication of something?). But my last cycle I tolerated fairly well so I'm choosing to do a 7th cycle if my onc says it's OK. I feel fine.other than I tire easily, but is that chemo or cancer I just don't know. What happens next? I can only have 8 cycles of Gemcarbo and have decided I only want 1 more max. I know each hospital trust has a different approach. I want to go on holiday with family in April but am scared that I won't be able to. It seems that a lot of women go onto Capecetibine as Stage 2 and I'd be interested to hear where you're all at. God, this cancer sh*t is rubbish, isn't it. Most of the time I just deal with the thoughts myself. Sometimes I talk to my husband about it, but rarely do i come to the Forum. Daft really when  you all know better than anyone what I'm feeling. I'm scared for the long (?) term future but can only deal with the immediate future. When I read your posts it gives me hope so thank you. Apologies for the ramblings of a scared woman. Xxx 💜 ... View more

Ruby  that is great news that you've been ae to access Trodelvy and please do keep us up to date with your progress on it.  I'm just coming to the end of my first line treatment,  cycle 6 of GemCarbo due on 4 Jan. I'll have had a 5 week break this cycle as my neutrophils take at least 4 weeks to come back to an acceptable level for chemo and I wanted to enjoy Christmas with not having to worry about it all. Take care everyone and have a lovely Christmas 🎄 xx ... View more

Hi Lancashire Lass I know what you mean - very few people understand about TNBC.  Even my family struggle to grasp the concept of it all. I've had one cycle of GemCarbo so far, and am due for No 2 tomorrow.  How long are you taking the steroids for?  I only take mine for a couple of days and in fact my onc said I could drop the last one if I was having problems sleeping.  (I was admitted to hospital with an infection on the day I was due to start chemo and was prescribed a 2 week course of steroids and just couldn't sleep - it was a nightmare, and I need a good 8 hours every night - you should have seen the dark circles under my eyes!) Yes, I do seem to have a touch of neuropathy, which I didn't really get when I was diagnosed with Primary BC in 2018 (I was on FEC-T then).  But I am tired most of the time, and like you struggle to do much that is energetic.  The only other noticeable side effects are hair thinning - I seem to be losing a bit each day, but no bald patches - and I had oral thrush for which my onc will give me Difflam for my next cycle and the usual bowel concerns. Cycle 2 was delayed a week because my neutrophils were low - they had been 1.29 on the Friday, then on the Monday when I was due for Cycle 2, they had gone up to 1.47, the target being 1.5 so the consultant on duty that day wouldn't authorise chemo.  I fully understand they have their own guidelines to work to, but 0.03 off!  I don't have a week to waste waiting for my bloods to go up.  And what can you do to increase them?  It seems like nothing - I was told to eat good home cooked food, wash all fruit and veg, don't eat anything raw.  That was it.  My dose will be reduced tomorrow and if my bloods are low next cycle they will consider the GCSF injections.   Best of luck to you Lancashire Lass xx ... View more

Kar I know exactly how you feel.  That was why I had a stay in hospital prior to chemo starting.  But everything seems to be back to normal now (whatever normal is these days).  I even think that after just one cycle of GemCarbo my breast tumour has shrunk so hopefully the liver mets are doing the same.   My 2nd cycle was delayed last week due to low neutrophils but it's on for tomorrow. I don't know whether to be happy or sad about it.  I'm happy because hopefully it will give me a bit more time but sad because I know I'm going to feel rubbish for days afterwards and wonder if it's all worth it.  I'm already tired the majority of time and breathless going uphill or upstairs and we live in a beautiful part of Derbyshire where our favourite walks all start off up a hill.  I'm too scared to try them but desperately want to go out and be normal. Take care xx   ... View more

Gillyflower - thank you for your kind words. I'm trying to turn my thought process around and be more positive, but it's so hard, isn't it, when you know what the outcome will be?  I decided a couple of days ago that I was going to fight this disease and I will, as much as I can.   Chemo is on for me on Monday, just as I'm starting to feel quite well again.  I'm on GemCarbo and they're reducing the dose this time as my neutrophils were too low and very slow to recover.  However, on reading various other posts of ladies also on GemCarbo, it seems that this is a regular occurrence.  Let's hope the reduced dosage works for me.   Thanks again xxx     ... View more

Hi Debi  Don't worry about the breath hold.  I had to do this and at most you have to hold your breath for 20 seconds.  It does sound hard and you will be asked to practice for a few days before you start 😉 I had a meeting with the rads team a few days before I was due to start so had about 5 days to practice.  If you can't manage 20 seconds just let them know because they can do it in shorter bursts 👍🏻 I think of the 5 of us from Oct 18 I was the only breath hold. It purely depends on where the tumour was, and is a precautionary measure to protect the heart from any damage by raising the chest wall away from the heart. Please don't worry about it, you may not need to do the breath hold. Just focus on your surgery first, and recovering from that 🤗 Feel free to ask more questions as and when. 💜 Fiona xxx  ... View more

Sending you big hugs lisaloo 🤗 🤗 We've all been there and had those exact same thoughts I'm afraid. I wish there was a guarantee so instead you have to make that guarantee for yourself, that your team will do everything they can and you WILL get through this 💪 💪 Be strong and be beautiful 😚 💜 Fiona xxx  ... View more

Lisaloo, what everyone has said here is right - once you know your treatment plan and have a start date, you'll feel a lot better emotionally (daft as that sounds) because you know then that you and your team are fighting this disease.  Just take it one day at a time and use the forum as much as you can.  Nobody wants to find themselves in the situation that we are in, and triple negative is rubbish.  But just look to the success stories  - Shi, for instance, has been an inspiration for the Oct 18 chemo ladies and myself in particular as I was TN too and am now in remission.   No-one will deny that it is a hard journey, but just deal with one day at a time and try to stay positive.   My husband came to every appointment with me and he took notes so I would advise you to take someone with you to every appointment with the oncologist, consultant, etc whenever possible.  I couldn't always concentrate so having him there helped me mentally because I knew he could take in the information while I became a pile of jelly 😉 I know how you feel, this waiting is pants and your mind can't think of anything else other than BC and the what ifs. Have faith in yourself and in your team.  Positivity really is the key.  And a strong support team too, family and friends. I was in a daze for weeks, just going from scan to scan to consultant until I got into the first round of chemo, then it all becomes routine and safe. Oh, I'd also advise you to take note of your reactions to the chemo so that you know what to expect the next time, even if it's something simple as a headache, runny nose, watery eyes. I got through chemo by having post-it notes on my fridge and crossed off every day and every week - it helped me to look forward.  And a jar of joy, where I'd put a note on a piece of paper of something that made me happy or smile that day. You will find your own little ways of getting through, but you will get through, a lot stronger emotionally, and we'll be there waiting for you to celebrate the end of treatment. We're all with you, Lisaloo, holding your hand. FiMIllan xx ... View more

lisaloo I'm so sorry that you find yourself on this forum but please believe me you really are among friends here, and the best sort you can find.  We've all been there or are going through it so can fully understand what you're feeling. My husband found my lump on 31 August last year, my birthday - some birthday present, eh?  I had to get through the weekend before I could go to the GP then waiting for the referral and all the tests.  The waiting is always the hardest part but trust me, you need to do all the scans and tests so that your team can work out the best course of treatment for you.  It was almost 2 months before I started chemo and I was terrified about how much it would grow in the meantime.  My team were excellent and yours will be too.  Trust in them.  I had neo-adjuvant chemo, in order to try to shrink it, then surgery then radiotherapy.  I finished my treatment on 20 June this year.  When I saw the oncologist before chemo no 2 they asked me if I thought the chemo had done anything and when I said I thought it had shrunk they wouldn't believe me.  So they measured it.  And yes, it had shrunk    And by the end of 6 sessions of chemo, the lump in my breast had gone and 3 out of the 6 affected lymph nodes had been "cured" too.  So please look on the positive side, talk to us as much as you want.  I too am in remission, like Shi.  Positive attitude, trust in your team and support from us and your family and friends are so important. We're here for you, Lisaloo xx Fixxx       ... View more

I think, as ever, it depends where you are. When I asked at Derby they said 1 year after surgery, but Chesterfield say 1 year after the end of treatment. Why can't all hospital trusts adopt the same policy? It really can't be that difficult, can it? Oh well, I'll just carry on with the daily checks (hubby wants to join in that too, and seeing as he actually found Humphrey in the first place, I think k I might let go. 🤣 ). Ellies mum, hope you had a fantastic holiday and not too much jetlag. Sorry for being a moaning Minnie today, it's just one of those days. Being sick in the park this morning was the start of a 💩 day. Good news though, my fibroids don't appear to have grown 👍🏻 in fact she said if anything they look smaller than 6 months ago 😁 Love to you all 🤗 💜 Fiona xxx  ... View more

At last something positive for you then.  That sounds interesting about the armpit laser. I've not heard about that or been offered it. I spoke to the bcn and she said it's too early to worry about anything. Radiotherapy gives se' s for up to a year. She said to just keep moisturizing and massaging it but just keep an eye on it.  And I asked her about my next mammogram, she said it's a year after the end of treatment 😲 so not til next June. Oh joy 🤔 As for the flax seeds, I don't know if they help. I'm going to go without for a bit and see if the sickness disappears first and just cope with the flushes.  Stay 💪 💜 Fiona xxx  ... View more

Oh Aneeebel, I'm sorry to hear that but good that it can be managed. You really have had every thing thrown at you haven't you 🤗 What will the laser treatment do for your scar? My armpit scar is still not right. It's inverted after those 2 humongous seromas I had. But it is improving 😉 .  I'm not sure if the change of brand of my ibandronic tablets is making me sick or the flaxseed I'm eating to help the flushes. I've been feeling sick most mornings but manageable. However today I went for my run but didn't make it back in time 🤢 so when I'm at the hospital later I'll see if I can make an appt with the bcn. Just when you think you're getting somewhere, cancer throws it back in your face 😢 Gosh, where has this month gone? I can't believe it's just s few days to go before we meet up 😁 🤗 💜 Fiona xxx  ... View more

Morning Aneeebel, fingers crossed for your lymphodema clinic this week. I really hope it's not, you don't deserve that on top of everything else. I think i might see if I can get in to see the bcn. I'm a bit concerned about my armpit. I'm sure it's only scar tissue but it's hard and aches a bit. I've got an ultrasound today on my pelvis to check out my fibroids, woohoo 🙄 💜 Fiona xxx  ... View more

That was beautiful. I can't imagine what it feels like emotionally to lose such a part of yourself but that was just heart wrenching. 💔 😢 🎀 💜 Fiona xxx  ... View more

It was just a cheap one from eBay, Aneeebel 🤣 I gave it to my nieces for their dressing up box 👠 💍 👗 💜 Fiona xxx  ... View more

I had a similar experience at our works Christmas do, Badboob. The barmaid asked me if I was the designated driver as I was drinking water, so I replied yes but also because I was on chemo. She nearly fell through the floor. I did have my purple wig on though! Aneeebel, I have bad pains in my feet too but I can't blame letrozole. My ankles don't work when I get up out of bed or off the settee, and my heels hurt most of the time. I know I need to lose weight (I got side traced by the rads and holiday) but this is quite painful, a throbbing most of the time. My flushes weren't too bad before hols but now they're terrible. At least 3 a night. I'm trying all sorts to deal with them but it's a slow old process. Cotton sheets, fan, chill pillow, special mightier, flaxseed, water, etc etc. If anyone has the magic cure please let me know 🤞🏻 Glad to hear the lottie's doing well. I've eaten my raspberries and one lot of peas, the dean's are flowering so not too long for those 🤣 Hope you're all well, and enjoying your holidays (those of you still away). I'm off to work in a bit, back on the diet and exercise, having just done a run 🏃‍ ♀️ .  Have a great day, ladies, whatever you're up to 🤗 😍 💜 Fiona xxx  ... View more

Now that I'd love to see Aneeebel! Do you ever sleep? I see you're still posting early in the morning 😴 My slèeping pattern is way off track this week. Is anyone else suffering with hot flushes and night sweats? Mine have been really bad this week. Mind you, my diet has relaxed quite a bit so if I cut down on the sugar and alcohol the flushes should lessen 🤞🏻 Good job we've had a hot tub this week for me to jump in 🤣 If anybody has the miracle cure for hot flushes can you let me know please 😍 Hope you're all well 🤗 🤗 💜 Fiona xxx  ... View more

Hi ElliesMum, I know it's after the event but in future you could try Skin So Soft dry oil spray by Avon which is supposed to keep the insects away. You can get it through Amazon. My hubby uses it and my stepmum, who lives in Scotland (home of the midges).  💜 Fiona xxx  ... View more