Oh yes of course it is, I’m a dozy bugger, I’m confusing my grades and stages......it’s my medication!! Lol
Stage and grade are different...so we’re both stage 4 ( Incurable) but the grade means how quickly it grows so I would say we were the same grade or you might be grade 1 even! X
No it’s not aggressive.....well it wasn’t, so hoping it still isn’t, she said it’s slow growing as i wouldn’t have been stable for so long. Well I’m assuming I’m grade 4 I always thought once you had secondaries it was classed as grade 4?? I might be wrong though??
Those horrible little buggers!! So sorry you were stable for so long it must be so heartbreaking and that’s my main concern...spread 😢 is your cancer aggressive? I’m grade 2 so slap bang in the middle! I’ve been told bone mets can we well controlled for a long time? But it’s weather it stays in just the bone isn’t it. Every pain I get I literally panic myself half to death about it and it’s exhausting. xx
Hi, no I don’t mind you asking at all, I was dx with mets in my bones in 2014, hips, ribs and spine and in January I was called in to see onc earlier than my appointment date to say something had been seen on the CT in my liver, was sent for a MRI to confirm and yep the little blitters have decided to party on my liver now too! I knew it would eventually come but it’s still an almighty kick in the teeth, I feel like I’m back to square one after being stable for so long.
I have my next scan in April, I’m always scanned 3 monthly.
you’ve really helped with all you’ve told me! I have private nurses come and do my bloods and ecg’s they are also part of the Ribocliclib trial and told me they have had good results from it who I I found so reassuring. I do get nausea but it only lasts maybe half an hour and that’s it...I’ve suffered with a headache on and off since last week I’ve no idea if it’s the meds ( been worrying )!! I thought that about the dose I’m on 600mg but if I get bad side effects I will ask them to reduce mine also. If don’t mind me asking where are you secondaries? I may have asked you but think I still have chemo brain 😅 I will have a scan maybe June/July time which seems ages but I know they need time to work xxx
Hi lollipop, well I start my third box tomorrow, l have found each day my nausea gets a little worse even after taking cyclizine (anti sickness tab) also getting gripping pains and my stomach just feels generally off, I’m back in clinic on Tuesday for bloods so I’m going to mention to her about dropping the dose to 400mg. A few weeks ago when I was first put on this combo I had an excellent secondary breast care nurse (she was also involved in the research of Ribociclib) so was really knowledgable, she said they people off on the highest dose and see how they get on with it then if need be it can be reduced to 400mg or 200mg, she said ladies panic if it’s reduced thinking they are not getting the full benefit but she said that’s not the case, she said it’s what your body needs, if that makes sense.
As for the Fulvestrant yes they do chuffing hurt but I think it depends who does them, I’ve had 3 lots now (load up dose) first was painful second fine then on Friday I had third and it’s been quite painful, I find the higher up they do it the painful.......better lower down where there is more fat on my cheeks lol!!
I don’t really suffer with the sweats etc now because I’ve been having zoladex for 6 years now so I think I’m through all that now thankfully!
Sorry for the long post 😃 but hope it helps!
im on the same combo as you, I only stated it last Thursday so not any side effects as of yet! I do feel a little bit sick after taking the Ribocliclib but it does pass. My god the injections hurt me though and still sore now. I’m also on letrozole and dunosumab. Hot flushes are happening more now 😱 how have you found the combo other than the sickness? Have you had a scan yet? Xx
Hi ladies, I was just wondering how you are getting on with Fulvestrant and Ribociclib??
I have my 3rd Fulvestrant tomorrow and I’m on my second week of Ribociclib (was initialling only on it for 4 days because of the infected finger then low WBC) I’m finding that I’m quite tired on it but it’s nausea that is the biggest problem, feel continuously sickly and my stomach just feels off, has anyone else had this and if so does it improve??
thanks Janette x
Yes good luck with your WBC too!!
I only managed 4 days on it when my finger started, it was over a weekend (typical) so had to ring the hotline, who advised me to stop taking the Ribociclib and go to the on call doctor. I’m hoping my is low because of the infection and being on antibiotics!!
Take care, Janette x
The nurses said to me that people often bounce back as the body gets used to it. I do hope so. I seem to spend my life waiting for the next bit of bad news.
Good luck Jeanette. I hope your WBC is behaving next week!
Hi Rara, the same thing has happened with me. I started on it two weeks ago then got infection in my finger and had to stop, went back on Tuesday my neuts were low so she didn’t want me to restart it yet, got to go back next week and see if it has gone back to normal, like you I was really disappointed because I am eager to get started properly on this new treatment, fortunately I could still have the Fulvestrant injections though.
i have just finished two weeks of the Ribociclib and how low neuts at 0.79 so had to stop and have two weeks off.
The onc team have said my levels should go back up and I can re-start cycle 2 as normal and that hopefully my body will cope better as it will be less of a shock.
Has anyone else experienced this? Other than some hair thinning I have been ok on the drug so I am gutted
Hi Nicky/Mermaid, thanks for your input.
Totally agree with everything you have said, it’s getting that happy medium isn’t it, at the end of the day we can’t wrap ourselves up in cotton wool it’s just about being sensible and listening to our body!!
Like you Nicky all my friends work full time as does hubby so I think I would go stir crazy being at home all the time especially through the winter months, we’re actually talking about getting a dog now too for company (children are 27 and 30 and have their own homes) I think it would be good for us, hubby worries so much about me and mollycoddles me (which drives me insane!) I think a dog would be a nice distraction!
hugs Janette xx
Just replying to your question about working.
When I was diagnosed with bone mets 12 years ago I continued to work as I enjoyed the job, it was office based and my hours were part time but very flexible. Roll on several years and my contract ended when the company was sold so I had to find a new job. I found at the time I also wanted to continue with the normality of it and not have too much thinking time. It worked well for me for several years. Later on, in my new job which I also enjoyed and was completely different to the previous one I had to give it up as I was visiting lots of health institutions and the risk of infection was too great to continue. I was on Capecitabine plus I had side effects that meant I couldn’t get back into a routine in terms of hours I could work until they settled. Since then I haven’t worked and although it was lonely and boring at first (most of my friends, who luckily for them have no health problems to deal with were working as was my husband) I managed to fill my days. With working 2 days a week it sounds like you have a happy medium so if you love your job it may be worth continuing as long as you feel you want to. If they are also understanding about having time off until side effects settle down then that’s a bonus. If though at any time you have to give up work or reduce your hours mire you should look at claiming ESA which is there for cancer patients such as ourselves who can no longer work because we are on chemo (it’s also there for lots of other conditions but we are classed as a separate case and should get fast tracked/not assessed). It has helped us financially, it’s not means tested, when I had to give up work and any form of chemo, tablet or IV, should support your claim. It’s not going to replace your salary but it does help ease the financial burden just when you need it.
Good luck with your decision, you need to do what’s right for you.
Im taking Faslodex Denosumab and Abemaciclib so a similar regime. I’ve continued to work but have just taken partial retirement so down to 3 days a week. It’s an office environment. I think as long as we feel well enough to work and we want to then we should! I think what most of us crave is a sense of normality and not so much free time that we get “ inside our heads” too much. It’s about balance. Hopefully we will all be “ living” with this disease for a long time. Xxx
Hi Kinden, thanks for your reply, I totally agree with everything that you have said, we do need that “normality” work gives us don’t we! I have discussed the work situation with my hubby and he is happy for me to do whatever I feel is right for me.
I’m going to see how things go in the next few months, I don’t want to rush into doing something I might later regret, like you I do enjoy my job and the structure to my week that it gives me and I know that I would also be crawling the walls with boredom and too much “thinking time” I’ve worked there for 15 years and my boss is very good and understanding of my situation.
Also I don’t want to put any financial pressure on my husband, he worries far too much about me anyway without having the financial worries too.
Anyway thank you for your input Kinden.
hugs Janette xx
I work full time, I have only had 4 days off sick since my diagnosis of secondaries in October last year. I believe it really helps my mental health remain stable if I carry on as much normally as I can.
I am 50 and have children aged 13 and 15 when I was diagnosed this time (my primary diagnosis was in 2008 when I was 38 and they were very little). My husband is the homemaker, hasn't worked since I was pregnant with the eldest. So, in my circumstances I couldn't imagine not working, not least because I have mouths to feed, but also because I don't know what I would do otherwise except crawl the walls with worry!
The side effects from Ribociclib, fulvestrant and denosumab are manageable, I just have to go to bed earlier than I used to.
Some people are astonished that I haven't immediately stopped working, but for me that would be like giving up on myself. I have worked hard to get where I am in my career, and I really enjoy my job too.
We are all different and affected differently, we just have to do what we consider is right for ourselves, there isn't a right or wrong answer.....wouldn't life be simple if there was!
Anyway, it sounds like your work is being sympathetic so far, giving you time to come to a decision.
All the best, Kinden x
Just a quick question ladies, can I ask your views on continuing to work??
I have phone work today to say I won’t be back in until I know my white blood count is up and I’m back on the Ribociclib, I work in a pharmacy (albeit just two days a week) I just don’t want to be coming into contact with people coming in with coughs and colds etc while it’s low.
I’m getting mixed opinions though from friends and family saying they think I should give up working all together.
I now feel torn on what I should do for the best?? I’m only 52 and enjoy my job and the independence it gives me and also the normality! However if it is going to impact on my health is that really worth it?
hugs Janette xx
Nice to hear from you . Sorry you are not able to start treatment again. It must certainly effect white blood cells as you had not taken very many. Hope it all gets sorted soon so you can start treatment again .
Hi ladies, well I’ve been back to the see onc this morning, she really doesn’t think it was a reaction that effected my finger and that it was infection and is happy for me to restart the Ribociclib however my white blood count is low so unfortunately I wasn’t able to start today and have got to go back next Tuesday to get bloods checked again.....fingers crossed 🤞 it will be a better reading. Really fed up because I am eager to get started with this treatment!!
hugs Janette x
Hi Linda/Nicky, it’s slowly improving thank you. It’s really bizarre, I’ve never seen anything like it and the doctors that have seen it have also not been 100% sure it’s infection but have treated it for infection. Spoke with bcn and I am still to lay off the Ribociclib until next Tuesday when I see onc in clinic just in case it is infection, apparently taking Ribociclib while you have infection can make you quite poorly?? Really fed up about it because I was really keen to get started on this new treatment and I’m just praying that it hasn’t been a reaction!!
Hope you are both keeping well.
hugs Janette x
Thank you for asking. Only had 2 so far going OK. Back at oncologist Monday 10 Feb. Think that will be just to ask how I feel and if I have any problems but you never know.
How are you doing? Think I read you are due your next scan March.
Shame we are to far down line in treatments we are not eligible for any of the new treatments never know things might change.
Nice hearing from you.
Only just seen you post and the phots of your finger. I do hope it got sorted out as it’s always worrying when something suddenly happens that you have no idea about. I have had tiny blisters on my fingers but only one or two spread over several fingers. Although I’ve not had ribociclib I have had fulvestrant and did have a few tender areas on my fingers occasionally whilst on it, but nothing like you have.
Linda, I hope you are doing OK on gemcarb, thinking of you.
Thinking about you how you getting on regarding your swollen finger? Hope it is all sorted and you are able to carry on with your treatment .
Sorry to read this Janette, hope you get to the bottom of it very soon and your treatment can resume. As Linda said, always at weekends! Thinking about you, Kate xx
It looks so painful . Hope A&E can get to the bottom of what is causing it. Why is it if something is going to happen it always happens on weekend when no one's about.
Sending a hug.
Well I’m currently sat in A&E at the moment.
I started with a weird looking rash on one of my fingers which has got progressively worse, rang the Christie hotline and was advised to get it looked at by a doctor, as it’s the weekend I had to go to the walk in centre, he was baffled but gave me antibiotics and some cream but this morning it is even worse, I have never seen anything like it, it’s really painful and I can’t bend my finger, it looks like lots of mini blisters all over my finger. Rang Christie’s again and was told to stop taking Ribociclib and go to A&E......beyond fed! Has anyone else experienced this??
I am doing OK thank you although it is early days. Due second one Monday.
I tend to get my hair coloured every 6 weeks with a semi permanent which is less harsh on the hair.
Nothing worse than feeling sickly hope it settles down.
Hi Linda, I got my hair coloured on Friday before my treatment started but I think I will still carry on getting it coloured, I’ll just make sure I take extra care with it, I don’t use straighteners etc just a good old hairdryer.
So far I haven’t felt too bad apart from the tiredness and a little sickly, around the area where they did the Fulvestrant injections has been really quite sore and uncomfortable though. And today I’ve started with a weird like prickly rash but it’s only on one finger!!
Hope you’re doing okay Linda.
hugs Janette xx
So young to be diagnoised with breast cancer 45 going on this horrible journey for 7 years.
Well as you say you did notice regarding your tablet. When you used to taking just 1 then you are taking a few. I found same on cape. Had 8 of them to take a day for 2 weeks.
You mentioned your hair the other day on you planning carrying on colouring it? I kept colouring mine during EE Cape, The chemo I am on can cause hair thinning. Depending how it goes might try getting it dyed. Was on Vinorelbine for 3 months middle of last year dyed it then no problem at all.
Well what a numpty I am!!! I just went to get my next Ribociclib tab and for some reason I decided to read the instructions again and it’s 3 tabs once daily, for some reason I thought it was 1 three times a day!! So glad I read it again fortunately today is my first day, the most annoying thing is that I actually work in a pharmacy!!! Think I need to give myself a kick up the rear end 🤦♀️
I hope the chemo goes well and is easy going for you, yes I am a bit younger Linda 52.
Hi Kate, thank you, I’m feeling very positive about this treatment and hoping it will stop the little uggers in their tracks. Yes I believe 3 monthly Denosumab is just as beneficial. Hope you’re keeping well.
hugs Janette x
Good to hear you’ve started your treatment, I hope it’s kind to you.
I’m on Denusomab three monthly and have been for over a year now. Initially I had it monthly then I had to have a break, almost a year off it, as I got a really bad infection in my jaw following dental work, it initially healed and my jaw was fine, then 10 months after I’d had the work done it just suddenly broke down! Luckily it eventually healed but my Oncologist thought it would develop into ONJ, have never been so relieved! When I went back on Denusomab the hospital policy had changed, because a couple of other ladies had had problems too and the latest research said it was just as effective. I’m still under the Max Fax team and that consultant had already told me she thought three monthly was more than adequate because it stays in the system for such a long time.
I am on steroids at the moment so eating like a horse. Always had a good appetite now can't stop thinking about food. Due to go for next chemo on Monday 3rd Feb. It is week on week off.
I remember now you are at a great hospital. Chemo brain. Shame all the hospitals are not the same. I do live in the North East of England. Oncologist are from the Freeman so can't complain but would be nice not to travel though. Never mind I have been on this journey for 11 years in August.
I am 67 now. Think you are a fair bit younger.
How many times a day do you take tablets? The tablet you are was mentioned to me but with my liver not been great I could not have it.
Hi Linda, yes I will also get the Denosumab at home too, I know I very lucky to be under the Christie hospital they’re are fantastic. I also saw a new breast care nurse yesterday, she is actually a secondary nurse and she was beyond helpful.
How are you getting on Linda?
hugs Janette x
Pleased your treatment has now started. Hopefully the sickness settles. Nothing worse than feeling sick or being sick.
It is great once you are settled on this treatment a nurse comes to your home. Will they be given you bone injection at home then? It is such good hospital you attend.
Thank you Kinden, good to know you are doing well with both treatments.
I am also on Denosumab 6 weekly but was told today that If I am happy enough to do so that I can go to 3 monthly, apparently it has been found that it is just as affective so long as your bone pain isn’t too bad.
Yes, I felt very nauseous after my first fulvestrant, but it passed after 36 hours and I wasn't actually sick. I started the Ribociclib 2 days later then was sick, but I think that was because I had also had some GTN spray at A&E due to chest pain, and it didn't agree with me. Chemo unit prescribed Cyclizine and it worked like a charm, straightaway.
I was a bit nauseous after the fulvestrant 2 weeks later, but Cyclizine sorted me out.
I have now completed 3 cycles of fulvestrant and Ribociclib (and denosumab as have bone mets as well as lymph nodes) and the side effects, which were never that bad, seem to get easier each cycles. Find out next Monday if all of this is doing any good.
All the best
Hi ladies, well I signed up for my new treatment today, I have had the Fulvestrant injections and I am going to start the Ribociclib tomorrow because I didn’t get home until after lunch so thought best to start in the morning.
So at first I felt fine but as the day as gone on I have started to feel quite sickly, has anyone else had nausea with Fulvestrant??
I was happy with all the info I got about both treatments, I have the Fulvestrant every 2 weeks for the first three doses then it goes to monthly and as long as my bloods and ECG stay good the nurses will then come to my house and do it so I don’t have to travel there which is a massive help!!
Hope everyone is keeping well.
hugs Janette x
Hope the new treatment goes really well with few side effects. Think more and more people do seem to be on it
Thank you Nellie, yes I also take Adcal, I usually have mine in the afternoon because for some reason it always makes me feel sickly if I take it in the morning. I’m also on Denosumab (bone infection) and Zoladex.
hugs Janette x
Hi I'm doing OK on the ribiciclib and fulvestant. I'm on week 3 of cycle 2. No real side effects as yet so hopefully it will be OK for a while. I also take ad cal for bones every day and have bone injection each month too. Bloods so far have been good. I do have a weird appetite. Sometimes I'm hungry but other times I just can't be bothered with food. If you take adcal I've been told to take it 3 hrs before or after other meds as it stops absorption of other meds. Scary as I'd been taking it for one whole cycle prior to being told this! Enjoy the hairdresses. Nothing like a good hair treatment to lift the spirits. Love Nellie x
Morning ladies, only just seen this thread!
Well I start this treatment next week and suddenly reality has kicked in. Having been stable with bone mets for 6 years on letrozole I was told last week that they have now decided to pay my liver a visit too, although I was gutted to hear this I felt quite positive about starting this new treatment, but today I am feeling really scared and worried about the future.
I believe it is a fairly new treatment so there doesn’t seem to be much info regarding side effects and success, any information/advice would be really appreciated, I’m pretty much okay living with this horrible disease as long as I am feeling well it’s when I feel rough with side effects or bone pain that brings my mood down as it is a constant reminder of what is happening if that makes sense.
Off to the hairdressers this morning for a good cut and colour as I believe that it will make my hair thinner??
thanks hugs Janette xx
The pulmonary embolism developed after my secondary diagnosis but before I started Ribociclib. I didn't know until my diagnosis with the embolism that those of us with cancer are more likely to get blood clots, I think they should tell us that. So, it is not a side effect of treatment but of cancer.
All the best