Breast Cancer Now Forum

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

Hi Kate, sorry only just seen this but I think your questions have been answered. You have the option to give the parcel straight back to the driver (if you manage to catch him!) I haven’t cancelled it on the government website because I don’t want to lose my supermarket delivery slot. Like you I also live in a small cul-de-sac and don’t want my neighbours knowing but like my hubby said it could be a delivery of anything eg amazon?? Take care J x ... View more

Hey Kinden that’s brilliant news for you!!  I bet that is welcomed news for you in these horrible bleak times we are all having, I’m really pleased for you, I’m praying Fulvestrant and Ribociclib has the same effect on the little blitters invading me!!! Had bloods done on Monday and yesterday onc called to say wbc is fine again now so back on the Ribociclib today! J x ... View more

Nicky, maybe you could leave a note on your door to let the driver know??? I think I will do that, I don’t want to change anything on the website in case it messes up my ASDA slot! J x ... View more

Yes Pawsome, that’s what I’m going to do, hand it back to the driver. Hope everyone is keeping well and enjoying the sunshine! J x ... View more

Morning Nicky, yes I’ve done exactly the same thing with the food parcel, it was a lovely surprise getting it yesterday as I really wasn’t expecting it but I said to hubby that we don’t actually need one as we now have a reoccurring delivery slot with Asda, it’s unfair to get get one of those and also a delivery slot, the food parcel would be better going to people who are more vulnerable like you say so I’ve also opted out of this too. J x ... View more

Morning ladies, well I had a knock at the front door this morning, there was a guy dropping off a big box, had no idea what it was, he said it’s your government food parcel!! I was gobsmacked, really wasn’t expecting this, and the stuff that has come is really good and I can use it all, so at the moment I can only praise this government food/shopping scheme! A recurring delivery slot with ASDA and  a food parcel all within 4 days! J x ... View more

Maybe it depends where you live??? I registered on Monday evening and got emails from the supermarkets yesterday, I didn’t try getting a slot at Sainsbury’s or Tesco I only did ASDA, the first available slot was 4th May, so not too bad really. J x ... View more

Hi ladies, to wanted to say thanks for the info re: delivery slots, I got my shielding letter, registered on the government website and had an email from Sainsbury’s, Tesco and ASDA already, I’ve booked a reoccurring delivery slot with ASDA. J x  ... View more

Hi ladies, feeling a little fed up today. just had my telephone consultation with onc, bloods low again, that is with a dose reduction to 400mg too (Ribociclib) got to go back next week to get them repeated. Also given scan results (first one since starting this new treatment) slight increase in size but only by about 2mm she didn’t seem overly concerned because I’ve not been on this treatment very long plus the hiccups with the low WBC and having to keep stopping them. She did say if it carries on dropping we might have to look at chemo which scares the life out of me!! Has anyone else had a similar experience on Fulvestrant and Ribociclib?? J x ... View more

Thank you pawsome, I’ve just done, it’s pretty quick and easy isn’t it. J x ... View more