Breast Cancer Now Forum

Hi carolyn i hope your platelets and blood spots recover before next round. Thanks for confirmation it’s not just me who spends half the day in the loo! Are you ok when on the peachy pills as for me it’s everyday on or off pills! I too eat bland food, soup, oven chips and baked potatoes, I don’t eat dairy but my OH has found lovely puddings for me made from coconut milk. They are a treat all from Sainsbury’s! Scan booked for Monday 7.20 in the evening, I’m usually heading for bed soon after that so will be excited for a trip out in the dark. results the 6th Feb. Hoping for stabilisation or improvement in liver as new oncologist described it as extensive liver lesions of all sizes.  Trying to stay positive. Good luck to all on cape. Xx ... View more

Hi All I've had good news my tumour markers are now down to 1600 from 2900 3 weeks ago so going in the right direction. I’m on my third cycle of cape, I’m finding it quite hard to manage, I eat and then 2 hours later I’m on the loo. Every meal!! I’ve tried the Imodium given to me by chemo nurses but this just gives me worse stomach ache. I’m not sure what to do, it really restricts what you can do, I spend the majority of my time at home because of the tummy problems, just wondered how others managed it! i have also had my dose reduced for 3rd round from 2150 to 1650. But no change to tummy or fatigue. any suggestions welcome!  Good luck to all cape crusaders!    Bel xx ... View more

Hi Carolyn and George just back from oncologist appointment, reduction of cape by 20% not sure what that brings it down too, maths was never my strong point!  Apparentley tumour markers are down from 2900 to 2600. Not sure what this means but he said it shows it’s working. Does anyone else have tumour markers recorded my last oncologist never used them, so I’m in the dark a bit. Feeling more positive today, scan on 28th Jan, results 7th February. Hoping it’s good news then and will then continue on 3 more cycles. well it’s my 38th wedding anniversary today so going to have relaxing day with hubby. Film watching and chilling I think.  Hope all well with everyone else.   Bel xx ... View more

Hi All  Big day tomorrow see oncologist to discuss level of cape and side effects! I’ve spent the day snuggled up in bed  with a hot water bottle as felt really unwell and it’s my week off!  Tomorrow is also our wedding Anniversary 38 years can’t believe it, not sure there’ll. be much celebrating going on. Never mind hope I’ll feel better.  No scan results as that’s not till after 3rd round.  Keep up the good work cape crusaders, it really helps me to hear about others experiences! And I don’t feel so isolated.   Bel xx ... View more

Hi Bon and everyone else   i was very poorly before going on the peachy pills(as Carolyn calls them) but once into them felt better. I’m just about to finish second round, whilst I feel better than I did before taking Cape, the side effects can take a bit of getting used too and managing. worst for me is fatigue, and dodgy tummy!!! I think it’s a case of getting dose right from what I’ve read on here. However I started on 2150 twice a day, but have lost a lot of weight so hoping that the dose will be reduced and I will find more manageable this week after seeing onc.    im not sure what others think but I far preferred having one dose of chemo every 3 weeks intravenously than all this pill taking!  Im on to 17-18 pills a day  now and can’t get my head round it all. Luckily my OH is brilliant and managing me.   Hoping for a nice day today as we are expecting 2 new goats next week, pandora and Tiffany, so need to complete there house today.   Hope everyone has a happy Sunday.    Bel. Xx     ... View more

Hi Ramade and everyone else. We have rescue animals too. We rescued 5 Alpacas, and 2 rather large pot bellied pigs, called Arthur and Bramble. We also have 15 rescued chickens! Alongside these rescued animals we have 15 runner ducks, 3 geese, and two goats called Pandora and Tiffany. We also have a small flock of 22 sheep. 2 rams called Barry and Kevin who we hand reared and now think they are dogs!    Animals are therapeutic but hard work, my OH works very hard looking after them, as I’m all but useless now as I get worn out so quickly. I do partipate in the growing of the veg, as we’ve set up a reclining sun lounger in the poly tunnel so I can take a break any time in there.   The last few days have been a bit up and down, tummy not coping very well and I’ve had to resort to Imodium, hoping that next week my dose will be reduced and things will settle down a bit. I’ve also lost 10kg, so I’m sure this will mean my dose can be lowered.   Interestingly I get the runny nose side effect in the 2nd week of cape! Hoping that everyone is well and side effects in 2019 are more manageable.   Definitley feeling more positive today!   Bel xx   ... View more

Thank you for your lovely supportive replies. I had my bloods done yesterday and they were ok, my tumour markers were better than they had been, my liver function was slightly worse than before.  Anyhow I feel a lot better, I’ve decided to go dairy free again as I wonder whether that’s making me feel so poorly. I started eating dairy after a 5 year break when I started cape because my calcium levels were so low and I can’t tolerate any calcium pills. so today I’m hoping for a good day, no anti sickness and less morphine and I hope to be able to go for a walk around our small holding to chat with the animals!  Again thanks for your support, I’m really appreciate it, particularly as I don’t know anyone else on the same treatment as me. Have a good day everyone.    Bel xx   ... View more

Happy New Year to everyone. im on my second round of cape day 8 but have felt really rubbish the last few days, I’m not sure what to do seeing onc on the 10th Jan after second round completed and scan after 3rd. I’m on 2150 twice a day plus morphine, antisickness, and vitamins.Side effects I’ve expereinced are sore cracked thumbs and feet, even with applying creams, sore mouth and poor appetite and nausea. I feel so fed up as if I stand up to do anything I feel very wobbly, and unwell. I’m more or less housebound as I don’t ever seem to feel well enough to go out. Energy is nil!i look appalling, I looked at photos taken over Christmas and couldn’t believe what I looked like. My skin, particularly my face is a horrible shade of grey and yellow! Any advice on what to do would help, I see on here a lot of ladies continue on cape for years, but I’m not sure I could stay on it as I feel it is dominating my life, I feel so fed up and worn out I don’t know what to do. We have no secondary BC nurse in our area but I have a good palliative care nurse. The chemo nurses are brill too but never really sure when to ring them, as I don’t want to end up in hospital. sorry for the long post, but felt I just need some friendly advice. xx ... View more

Hi All i often read that ladies have problems with needles, bloods taken etc, , which is what I had for several years, however earlier this year I had a port a cath fitted, its brilliant and I don’t get problems at all.  A lot of hospitals don’t offer the option unless you asked, which I did and they arranged to have fitted quite quick. (I only learnt about it from a fellow chemotherapy patient) Contrast for scans go in, bloods out and chemo in. Once used a small plaster on and off I go. over the summer I as able to swim etc as  all that’s visible is a small bump on my chest and no external tubes. The last straw for me was when they had to take bloods from my feet, very painful and slow and bruises horrendous. im sorry if you already know about this but I didn’t so thought might be worth a mention here and help someone else having similar problems that I had.   good health to all. X     ... View more

I’m a week in on first round of peachy pills and apart from feeling slightly nauseous in the morning, I’ve not been too bad. Liver pain has started to ease off as oramorph kicks in. Nurse said to maintain pain relief not try too get on top of it once too bad, so at the moment that’s what I’m trying to do. still waiting for biopsy result. Is this normal, whatever is normal, start to cape. I’m not sure what to expect! good luck to all and stay well. X ... View more

Hi All   After my initial melt down that having spent the whole Summer on Docetaxel for a splattering of liver mets (onc’s words!) only to find by 1st October liver Mets had spread extensively through my liver, I am at last calming down! ( well a bit anyway). I also requested a Chang ego oncologist as I’d been with same one since primary in 2005. for the last couple of months I’ve felt so lethargic and unwell, on so many pills and potions I haven’t managed to do much but today I’ve turned the corner. LOTS OF POSITIVE thoughts from my lovely family and friends as I join n the CAPE CRUSADE! so this morning ive popped my first “peachy pills” as Carolyn calls them. im hoping for not too many side effects but I seem to be having quite a biggish dose. 2150g x 2 a day? I weigh about 10 stone. So not sure if that’s why!  Im also waiting for the results of liver biopsy from last Thursday. Very surprisingly I found this quite painless! A night in hospital to recover but no discomfort from site. Please any advice help on cape would be appreciated, Ive been booked for 3 cycles then scan, so hopeing  that it works well for me.  Good luck to all other cape crusaders. I’m going to be busy today wrapping all those internet xmas presents that it’s all to easy to buy when your sat at home!  Fairies and elves seem to have decorated my house already!!  Xx   ... View more

Hi all  good to see so many positives around cape chemo. I have heard this morning that I can’t start cape till I’ve had liver biopsy with is now scheduled for 30th. Cape to start on 10thDec! thanks for info on biopsy still a bit nervous but just want to get it started. ive now had 7 weeks where I’ve been shaky, lightheaded and wobbly so not been able to do much without a place to lie down very nearby! I’m hoping that Cape will sort me out and make me able to get out and about more. In our area we don’t have a SBC Nurse so I do feel very isolated. We so need one but no money! Apparently!!  Mad when your support so well with primaries then bang once you get secondaries you’re on your own! Hoping to get some further support from palliative care team at hospice. Keep well everyone Bel x   ... View more

Hello everyone I’m just joining this thread as I’ve been on Docetaxel 6 rounds which finished in July for liver mets, all ok for about six weeks then felt really poorly, GP thought it could  be flu, amongst other things, but eventually after a CT scan last week, was told by oncologist that I now have extensive mets to liver and also in lungs too. On the plus side bones stable! I’m rather gutted, waiting now for start date for capecitabine. He also wants to do a liver biopsy to check it’s still the same as my primaries from 2005. Can anyone give me any info on liver biopsy, bit scared! Im hoping that Cape is easier than docetaxel as I found that really hard and disappointed that it didn’t really work!  reading though post it seems that lots of ladies find it easier if the dose is right. I’m starting on full dose so a bit worried. Any advice would be very much appreciated. keep well everyone     ... View more

Thank you for the quick reply, even more frustrated with my care now, received letter in post today to say onc not available in December, so now appointment Jan 12th, that’s 8 weeks after my scan and 5 1/2 months since last appointment! I can’t believe it, I don’t think they realise how stressful life is for us ladies!  Will insist that I get new onc with appointment at end November!  Well that’s my rant over, no wonder they send these letters to arrive at weekends when no one available to phone!  Have a good weekend, very wet here, and another update next week. Xx ... View more

Hi All   I hope you don’t mind me joining  in this thread. I was diagnosed with Bone Mets 2 years ago and was on faslodex and denosumab. However, in March this year I had 2 large mets and a splattering of small ones through my liver, nodes in my lungs, a pelvic adnexal mass and a further lump in my left breast. (Which was my good one!)  As a result, I stopped hormone therapy and went onto Docetaxel 6 rounds, all now complete,CT  scan says I’m stable.  But im feeling very scared, I’m now only on Denosumab, nothing else, next onc appointment December. i am seeing my GP this week as I want to change consultant, as my current one is not very forthcoming with information, so much so I only learnt about new breast lump and lung nodes from the letter he wrote to GP, he hadn’t ever mentioned to me! for the last 2 weeks I’ve been experiencing bad head aches, flashing lights, some giddiness and nausea. I’m terrified that it’s now spread to brain. I’ve not had any scans on my head. I think I will mention to GP this week. sadly in our area we don’t have a SBC Nurse, and the other nurses are reluctant to talk to Secondary ladies, Although I suppose headaches could be stress,! sorry for long post just would like to hear others thoughts as I don’t know anyone in the same position as me. thanks   x ... View more

Hi Nicky thank you for the reply. That does make me feel much better knowing that you had a reduced dose and it helped to shrink them. I had third chemo last Friday and now await the scan next Monday to see if it's working. we live out in the sticks so I'm sure our local hospital will not do liver resection but it's something to think about for the future. thank you for the information too about RFA I've now heard of this either so I will definitely remembering this for future.  I hope you continyue to make a good recover from your op and have enjoyed relaxing in the sunshine this lovely bank holiday weekend! Bel xx ... View more

Hi All i haven't posted for sometime as all was going well, but as there has been some changes I thought after reading this thread I would do a post. i had faslodex and denosumab 21 times and really had very few SE's so was lucky had scan every 3 months and bone mets remained stable so onc decided to leave me 6 months! Well at the onc appointment 3 months ago I saw onc for results he said that whilst bone mets remain stable but I now have liver mets, 2 a couple of centimetres and splattering throughout liver! Immediately put on taxatare 3 weekly, bad reaction to first dose, in hospital, then onc reduced dose for next dose, coped much better and was given figrastin injections for 7 days. 3rd dose today, then scan to see if it's working 14th.  Im very scared that having the reduced dose means it won't be so effective, has anyone else had experience of this. My onc was very vague! Bit gutted he also left me 6 months between scans! I'm no longer on faslodex but remain on denosumab.  Im also interested to read on here about liver resection. I haven't ask my onc about this but have noted as a question for next time, is this a common treatment for liver mets? i go to a local primary BC support group, but don't have any one else to chat too about liver mets!  Thank you in advance for any advice you can give.  ... View more

Hi dragoncarine So sorry to here your feeling so fed up, its a difficult time for you, but you are receiving good advice from ladies here who have been through similiar.  I am relatively new to all this to and like you can't understand why they only do a mammo after primary! Nothing was ever discovered on mine and I had a recurrence in my breast, which I found a couple of weeks after a mammo!  Anyhow that was 5 years ago and now I have bone mets, which were discovered after 6 months of scans and waiting for results. Mine were only confirmed with pet scan, but like you I only have CT to monitor. When questioned my onc said that they know what they are looking at now it's been confirmed and are just looking at changes.  Whilst I think it's difficult to understand this, I think we do have to put our trust in them, I have had several long chats with the cancer nurse at the chemo unit about my concerns and this has helped, she is much more informative than the BCN who seem to be only interested in supporting people with primaries. Perhaps it would help you to talk to a nurse, they do seem to have more time to explain things in more detail to you. Anyhow please keep reading and ranting these posts have helped me enormously, even if you don't post.  Im perhaps one of the "lucky" ones at the moment, faslodex and denosumab has kept me stable for early a year. Keep positive. Love and support to you Bel.  ... View more

Hi weeme I'm on faslodex and denosumab, and have been since sept 16. All well and 3 stable scans. Side effects with me are hot flushes!! Manageable,  and I get very tired 10-14 days after jabs! Apart from that I work around 30 hours a week and try to carry on as "normal." So I find it ok. I do get a bit depressed but I think that's the condition not the treatment!  Hope you find treatment ok too,  Bel x ... View more

Hi there. Reading your post about  your mum sounds very familiar to me, I am in a very similar situation but a nearly a year on. My primary was in 2005 with a recurrence in 2011, feeling very positive that I'd beat it but was diagnosed with bone mets in 2016. My thoughts were like your mums, I'm not going to see my grand child, who was due a few months after my secondary diagnosis, however I'm here now and my mets are stable. it is all very daunting at first but once your mum gets a treatment plan and you get your head round it, things will improve. I'm not saying it's easy, my family and I have our up and down days but we are all more positive. Like me it sounds as though your mum has a very supportive family, which is important, I am determined to see my grand daughter, and hopefully more grandchildren ( I have 4 grown up children) grow up. It's important to be positive, ask lots of questions to medical team, and live for today. all the best, hope this helps. Xx ... View more