Hi I had primary breast cancer on left breast 2007 and went through the mastectomy, chemotherapy and radiation treatment completed by June 2008. Thought it was all over n faithfully went for check up etc. 2017 April diagnosed with bone metastasis. Started on ribociclib clinical trials in August 2017. Have been on it since. Yes there is the tiredness and I have had mild diarrhea. My blood count did drop but oncologist said it was expected but he’s always saying it’s fine. About 3 months ago I experienced some pain at right hip but when I mentioned it to him, he dismissed it as nothing. CT scans are done every 3 months showing all clear so far. Just wanted to share and know what others are experiencing.
Also wondering if I should do a PET scan as I’ve heard they are more sensitive than CT scans especially for bone mets.
Hi Annmat,
I work on the Policy and Campaigns team at Breast Cancer Care, and I wanted to see if you wouldn’t mind me asking about your ribociclib clinical trial?
Ribociclib in combination with fulvestrant is currently being considered by the National Institute for Health and Care Excellence (NICE) to be made available on the NHS in England for treating advanced hormone-receptor positive, HER2 negative secondary (metastatic) breast cancer. Its use in combination with fulvestrant will offer those who have previously been treated with one line of hormone therapy for their secondary breast cancer the opportunity to benefit from this drug.
We are gathering evidence to contribute to NICE’s patient carer groups submissions and we want to hear from anyone who is being or has been treated with ribociclib in combination with fulvestrant to help us inform our response on what access to this drug would mean to women with hormone-receptor positive, HER2 negative breast cancer.
If you would be happy to contribute then please email campaigns@breastcancercare.org.uk and I can get back to you.
Thanks,
Olivia
Hi Olivia,
I’m not from UK so I’m not sure if my input counts.
Hi Ann mat I am also on Ribociclib with Letrozole This is first line treatment for me; as I was diagnosed with Breast cancer this year…
Have been on it since June of this year.
I have had only one CT scan but am due another Bone scan.
I seem to be tolerating the treatment well so far.
I still have sone bone pain, back and pelvic area, but only if I am in the same position for a long time.
The Zometa infusions help with the discomfort.
So far I feel well and strangely people gave commented on this.
I am in no rush to return to work as I am gaining new interests and i have hope for a future although it will be different from what had anticipated.
But you know what its ok.
Gina x
Hi Gina,
Nice to hear from you. The regular CT scans as cause I’m given these medication as part of a clinical trial. So it’s a requirement of the trial so they can monitor the progress of the medication. I’m also having Zometa injection every 2 months once.
The side effects are minimal for me too and not many people know I’m stage 4 at my work place as I didn’t tell many of them.
I just do my job like usual but my boss was informed so that I could arrange my hospital check up etc.
I’m glad that you are responding well and you sound like you are doing well. Take care and God bless you. Do what makes you happy.
Hey.
How are all you Ribociclib/Palbociclib ladies.
Keep warm.
Keep hydrated.
Don’t push your selves but do what you makes you happy.
Gina xx
Hi, this is the 1st time I’ve posted on here. I was diagnosed in September. Stage 1 , grade 3. Had a lumpectomy in October and just had results from the onco dx test. I scored 24, so 1 point under the need for chemo. Will have radio therapy in January and been prescribed letrozole, calcium supplement and Ribociclib.
I got completely overwhelmed reading all the possible side effects but am trying to keep it in perspective as even paracetamol list so many possible side effects.
I guess I wanted to hear from people who have been on this combination or even just the Ribociclib to see how they are tolerating it.
Sending lots of love to you all on this sunny day.
Elizabeth K
Hi Elizabeth,
I had lumpectomy in January, grade 2 but had gone to 1 lymph node so had oncotype test and scored 26 so have had chemo, radiotherapy and now just started anastrozole and ribociclib. Like you, reading about the side effects of ribociclib really scared me but I have completed my first cycle of it now. I felt awful the first few days - tired and sick - but that has improved and my blood test and ecg have been fine. I am most worried about the risk of infection and still uncertain about how careful I need to be. But overall so far it hasn’t been as bad as I feared!
I wish you well with the next stages of your treatment.
Hi Helen, thanks for your reply. Sorry to hear you had to have chemo as well. You really have been through it!
Tgats one of my fears risk of infection! I was so relieved not to need chemo but then read these possible side effects and it sounded just as bad!
Good to hear the symptoms improved. I must say I’m not looking forward to the treatment at all! I’m self employed and single parent to a 24 year old autistic son who is more like a little boy if 10! So it’s xxx all a bit overwhelming!
Hi Elizabeth, please rest assured that you’ll be incredibly unlucky if you get any/all of the side effects.
I’ve been on palbociclib, which is very similar, since December 2020. They told me I’d lose my hair and that had only just happened to me so I was devastated. However I now have hair down to my shoulders. I work a full time job and my children are now 7 and 11 so were quite young at diagnosis. I do have to pace myself so I don’t get too tired. I’m careful with not getting bugs. I don’t socialise in the evenings too much. It is definitely manageable though.
Please just message if you need help with anything.x
Hi Elizabeth,
I am just about to start Ribociclib in the new year - was meant to start this month but after a year of mastectomy surgery, chemo & radiotherapy, I want to go away with my family at Xmas before my immune system drops (if it does - according to the scary side effects leaflet!!).
I am still working ft but luckily with many reasonable adjustments to avoid any viruses or infections.
But I work with kids so this may change. I also run a kids youth club at night twice a week. Plus I go to a drama group & choir. I’m a great believer in social connections & they have carried me through in recovery but I’m worried I may not be able to manage everything in the new year - and for me that will be really difficult.
I obviously cut back a lot during chemo but felt so different to everyone - plus I had nothing to talk about as I wasn’t doing anything. You need to live a life, not just treat it & that’s my biggest fear I suppose.
Anyway, I’m trying & failing badly, to get in shape for starting ribo & cope with lymphedema I go to yoga a few times a week but I really need to swim, do rebounding exercises & stop eating the Xmas quality street!!!
Keep in touch - I don’t really know anyone else on this. It’s only just come out on Scotland this year for non metastasic patients.
Hi Elizabeth
I’m on cycle 2 of Ribociclib. I was scared right from the start about the long list of side effects as well.
Other than some nausea, headaches and fatigue in cycle 1 (all of which I could still manage normally) it seemed to go ok
However day 2 of cycle 2 - I didn’t not feel well. Achey bones, shivery etc. my temperature was rising slowly through the day until it hit the dreaded 38c. Long story short - I ended up on hospital for 3 days with neutropenic sepsis and on IV antibiotics and with white blood cells boosting jabs. The process of the emergency prescription worked very well and I was well looked after.
I had 10 days off the drugs (in addition to the 7 day break) but have restarted cycle 2 now.
I am even more scared now of side effects, the oncologist has reassured me that’s it’s not common for this to happen and I was unlucky but the fear has crept in. They have advised me to take sensible precautions. Wearing a mask in crowded places and avoiding people with viruses/infections where possible. I know this sounds like a minor adjustment but I hadn’t quite anticipated that this would be how things were to be
Yesterday - I started sneezing and feeling full of a cold, so I’m back to taking my temperature almost hourly (rather than daily). The fear it will happen again is high.
They have said if it does happen again they will look to half my dose (currently on 400mg)
I dont know about anyone else but 3 years feels like a long way off. I just hope over the coming months, I settle into the medication and the impact of it becomes much clearer and more manageable.
Angela
Oh Angela, that’s been hard for you & being in hospital must have been quite scary. Thank goodness you/they caught it quickly.
I really hope your body adjusts & tolerates the next cycle, or they adjust the dose to get it right for you. I’m sure I’ve read or listened to a podcast that said lower doses can be just as effective (but don’t quote me - menopause brain doesn’t retain much nowadays!!).
I’m starting my ribo 3 year journey next week & your post has given me the fear a teeny bit, but I will know to keep the batteries in my digital thermometer well stocked! Oh the joys.
Hope you managed to have a nice Xmas.
Fingers crossed no more mishaps
Let us know how you get on - Gayna x
Oh my goodness, you all are doing so amazing. I’ve just had the pathology from surgery - margins clear, which is great. This is my 2nd breast cancer diagnosis with a local recurramce, new primary and also a single tumour mets to lung.
I’ve got radio to be done to breast, then to move forward with lung with SABR, ablation or resection. I was previously in tamoxifen (only) and so now will be moving onto another hormone/endocrine and my surgeon has mentioned me to be a possible/good candidate for CDK 4/6 inhibitors. I’ve done a bit of research, but don’t know exactly which concoction that will be yet. Safe to say I’m pretty apprehensive about the whole thing, whilst knowing that the ‘fight’ must be fought. M non-cancer friends don’t really understand the future for me, their assumption that ‘the treatments are so much improved and people live for years…’ is from a good place, but it feels quite lonely at times.
It’s good to read your experiences here and I’m sorry for all that you are all going through.
I just wanted to put out my feelings, feeling quite low this evening xx
Fight on and best wishes to you all this new year x
Hi Gaynor (and everyone else!)
Pleased to report I weathered a stinking cold without ending up back in hospital. Am so pleased as I can start to understand what to worry about and what not to worry about (as much)
Oncology team were very good (again) and just asked me to watch and wait to see how symptoms developed, my temperature remained good and I got a quick check over by the GP. Feels like the cold probably lingered a bit longer than normal but good to know my body can fight it. Especially as I’m 2 weeks into cycle 2 so my neutrophils are not likely to be great.
Had another blood test this morning so am curious to see what my results are.
Am still at the start of this 3 year journey but learning bit by bit.
Be good to keep in touch with others on the same path as despite having close family and friends who’ve had breast cancer I don’t know anyone on this drug !
Angela
Yay to the common cold not bringing you down Angela 
That’s a real boost for the new year, and you sound much brighter & very relieved (if not a bit snotty).
Tbh, after reading your post Ive been really worried about starting this (next week). But maybe not so much now.
Had my pre start blood test a couple of days ago - 4 attempts, eventually took it from my wrist which turned my stomach. I’m more worried about the continual blood tests than the side effects of Ribo just now, as my veins are shot to pieces & I want to protect my lymphie arm. Plus I want to avoid being back on the picc line (which will make me feel too medicalised again) so will drink litres & litres of water, wrap myself in hot water bottles & wear a huge tena lady on the day of bloods!!!
But, glad to know that our bodies can withstand a cold. Bet it feels like a huge win.
Hope you all had a good new year - I went up Cairngorm mountain (as far as car would take me) to watch the sunset on this quite crappy year. Was quite cathartic. Am now housebound due to snow, so nothing for it but catching up on festive telly.
But here’s to a peaceful, healthy & happier year for us all. We have got this 
Good to have you on here Eve. I’m sorry you’re having to go through all this again. I can’t even begin to understand your worries.
But use us for a vent, some light relief or to ask Qs - agree that even really good friends who don’t have cancer just don’t get it. Or, we hide things from them to appear normal.
But no hiding here. Just try not to think about it all the time, it drags you down. I like to listen to podcasts while walking (I love desert island discs just now, I’m intrinsically nosey about others lives). And I do paint by numbers listening to nice music. It gives me at least an hour or so every now & then of pure escapism. It’s so important.
Just wanted to say hi & I hear you. Take care x
Thank you for the reply Mabel, these chat groups are a lifeline, you are right about not going down the rabbit hole for sure…I find it really hard to ‘turn off and relax’ fo all sorts of reasons, but it is something that I need to learn to do xx
Best wishes for the year ahead too…and why not put up one of your paintings some time too 
Morning
Getting out is so important isn’t it. Have just come back from a lovely snowy walk with the dog. I really want to start doing more but conscious I need to take it slowly!
Sorry to hear about your blood test drama - really hoping that doesn’t carry on being a problem for you. My understanding is - it will be blood test every 4 weeks (unless they are concerned about you) so hopefully water and heat will do its job!
I do feel very lucky that I didn’t have to have chemo and feel for all you ladies who had to go through it - hopefully this phase in your journey will be straightforward.
My blood results came back at 1.4 neutrophils. I’m so pleased as it’s a big improvement on where I was this time on cycle 1. So am hoping my body is starting to adjust (if it’s not too early to think that?)
Wishing you all the best best for the week ahead. Let me know how you get on x