Breast Cancer Now Forum

Hi Gillyflower, sorry only just seen your reply, I don’t tend to come on here much anymore. cape stopped working for me and I’m now on my final cycle of paclitaxel, it’s been okay but I’m feeling exhausted now, I have it every Friday and I’m also using the cold cap, the cap has  worked really well for me and I’ve only lost a little bit of hair. my dilemma now though is what comes next, they have said I could do another 6 cycles of pax (18 weeks) or have a treatment break, both options fill me with dread!!!  J x ... View more

Hi Helen, my GP has always filled my DS1500 form, good luck with getting it sorted, we really don’t need the hassle do we, I think it should be awarded indefinitely. J x ... View more

I had mine on Friday and I just had the sore arm, similar to when you have the flu jab, it was all really well organised and was only there 20 minutes (you have to sit for 15 minutes after the vaccine. J x ... View more

Hi Gillyflower, not been on the forum for quite a while but just wanted to congratulate you on your amazing news!! this is just fantastic, I bet you are so unbelievably happy but also a little in disbelief too! I am on my fifth cycle of cape now, had two reductions due to hfs honestly I could hardly walk my feet were that bad, now on 1000 twice a day and they are practically back to normal. I got the results just before Christmas of my first scan since starting cape and my bone mets remain stable and there is a slight reduction in one of the lesions in my liver, it totally made my Christmas, so it looks like cape is doing the job 🤞 You take care and maybe I will bump into you at the Reebok sometime when the shops reopen!!  hugs J xx ... View more

I am genuinely shocked and upset to hear about Nicky passing! She was just such a lovely person, always replied to any questions or worries we had and she was so knowledgable.  I actually sent her a private message a few weeks ago and thought it was odd that she didn’t reply which is not like her! Sending my love and condolences to all her family.......RIP Nicky 💖 xx ... View more

I’m on my third cycle of Capecitabine and I’m having eye problems, sounds weird but they feel really dry tired but they are also watery too plus I have bags under my eyes you could carry your shopping home in! I’ve bought some hypromellose today to see if these help. J x ... View more

Fantastic news Anne, really pleased for you! I have just started Capecitabine this week, sooo hope I get great results like yours too! J x ... View more

Hi Buzzing/Susan, thanks for your reassurance regarding Cape. Its always good to read encouraging news, and I’m really pleased it’s going well for you. I’m feeling a little better now, I rang my SBCN this morning and had a good chat with her and also mentioned the fact that I’m fed up of telephone consultations as you don’t always take in everything over the phone, anyway a few hour’s later I got a call from the hospital with a face to face appointment next Wednesday!!  J x ... View more

Oh really, it’s a fantastic hospital isn’t it, feel very lucky to be having them look after me!  Are you in the Manchester area or do you travel in?  J x ... View more

Hi, I too have had progression from bones now to liver and am waiting to start Capecitabine next week. I asked my SBCN if a glass of wine at the weekend would harm, she said absolutely not and that if anything it would help me relax, she said there isn’t an oncologist in our hospital (the Christie) that would tell you not to have a drink (obviously within reason!!) sh said the liver is a huge organ that is constantly repairing itself and a few glasses of wine won’t make a jot of difference to the mets. I have woke to feeling totally fed up and anxious about starting Capecitabine next week so I think I’ll be having a few glasses this evening 🍷 cheers ladies  J x ... View more

Hi, Nicky/Gillyflower Thank you for your replies. I feel a little better this after an unsurprisingly decent sleep, it’s usually once you get in bed the thinking time starts doesn’t it!! To be honest from day one I didn’t get along with Ribociclib so I think it just wasn’t for me. Hoping Cape will be a more trusted friend!!  hugs J x ... View more

Hi ladies, only just seen this thread, I just started a new thread......should have looked through first!!  I am being changed treatment from Ribociclib to Cape, bone mets have remained stable but it’s not working on my liver. Got to have a blood test DPD blood test first, then should be starting Cape in a week or so.  I feel more confident having read these posts, never felt brilliant on the Ribociclib and had to be reduced to the lowest dose so I’m praying for better results with Cape. I see a few of you were due scans/results, how have you gone on?? hugs J x ... View more

DiJoy, I’ll look forward to reading any tips you get on neutropenia/diet 👍🏻 J x ... View more

Hi Jennie, I’ve only just seen your post ( got a puppy and being kept very busy!!) sorry to hear that you have to change treatment due to slight increase in liver mets, you were doing really well on Fulvestrant and Ribociclib too!! Good luck with your new treatment. J x ... View more

Thanks for that Jennie, I’ll look for that now. I’m down to 200mg due to low white blood count, just praying it finally settles down now! J x ... View more

Lollipop, totally the best news, really pleased for you, I know you have had a tough time since dx.  I also had stable results this week from new treatment same as you Ribociclib and Fulvestrant, like you I’m finding it very doable with no real side effects apart from the pesky white blood count being low so now been reduced to the lowest dose 200mg but have been reassured that I will still be getting the same effects it’s just that’s all my body can tolerate, however if I can’t tolerate this dose it’s chemo next for me 🙈 Hope you are going to be celebrating your excellent news!! J xx ... View more

Thank you for that lovemama, an helpful and interesting read. J x ... View more

Hi Kelliebear, so sorry to read how much you are struggling at the moment.  I just wanted to add my support for you. Regarding diet:  I totally understand what you have said about diet and Super foods, I’ve been down the “guilt” route about what I should and shouldn’t eat and you can drive yourself crazy with it!! Like Nicky I personally  haven’t changed my diet/lifestyle, I’ve always tried to eat a balanced eat and try to stay active (as much as poorly bones will allow) As for your treatment, I was on letrozole for over 5 years and I didn’t lose weight (my weight has always been around 8st) and neither did I lose my hair albeit it did go very slightly thinner but nothing at all noticeable.  I hope this helps a little. J x ... View more

Oh I’m glad you got it sorted. I’m okay thanks, treatment been a bit up and down due to low white blood count, I’m just hoping it’s going to settle down soon! J x ... View more