Evening all
I am very fortunate that I have private health care from my work and they have approved my oncologist prescribing Ribociclib. This is the only CD4/CD6 inhibitor that had node negative Stage 2 (either grade 3 or high oncotype score) patients in the clinical trial and it has been shown to reduce recurrence.
I just started treatment last week so thought would start this topic. Interested to hear how other people with primary breast cancer who have been prescribed this are getting on and also may be others like me starting on this.
Hopefully it will get approved for the NHS in spring next year.
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Hi @bordercat Iām in a similar situation, I have private healthcare through my job and they approved Ribociclib. I am on cycle 10 now, I started it ~8 weeks after finishing chemo, surgery and radio. I feel lucky to have it so I have persisted with taking the tablets. My main side effects are fatigue and some nausea sometimes. Iāve had a couple of occasions where my neutrophils have dropped very low. I havenāt spoken to any people who are on it for primary breast cancer so looking forward to hearing more stories 
Hi @bordercat
I too am in a similar situation, my healthcare has just approved Ribociclib for my primary breast cancer.
I am due to sign the consent forms next week and start treatment in January.
I am currently taking anastrozole and coping well with few side effects but must say Iām a little worried about starting Ribociclib as the list of possible side effects sounds much too like chemo to me. My oncologist strongly recommends I take it so Iāll give it a go in the hope Iām one of the lucky ones with few side effects.
Hope to hear more from others taking this drug.
At what point in your treatment do you take this ? Ive recently been diagnosed with dcis and idc stage 2 grade 2 triple positive. I am on 6 cycles of chemotherapy and then mastectomy/reconstruction. Is this something you take after ?
@Jess_1 Thanks for replying and good to know how you have found the side effects. Glad you were able to persevere and wish you all the best. That was good you got to start so soon after finishing your main treatment. I just qualified as apparently you have to be no more than 12 months after treatment finished. I finished radiotherapy in November 23, so had to make the decision really quickly. Fortunately, I contacted my oncologist to ask about it.
@Valanne I understand your concerns, I was fortunate not to need chemotherapy, so the possibility of neutropenia and some of the other side effects does concern me. Also, having finished treatment a year ago (other than bisphosphonates) a bit daunting to be starting again. It looks like it is a game changer though, especially for the node negative group with high grade tumour as the other CDK4/6 arenāt an option. So for me sounded like a no brainer not to take it. I feel very lucky to have the option. So far it has been fine, hope you get on ok.
@shannon27 Not sure what current āprotocolā is, it is usually after radiotherapy and may have to have been taking an aromatase Inhibitor for a while. @Jess_1 may have more info. The clinical trial was NATALEE.
Looking forward to hear how everyone gets on.
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This is super interesting
My onco said if I were her private patient I would qualify but as her nhs patient itās not approved
But by āapprovedā it means the cost not the actual medicine
Makes me cross to be missing something that may reduce my chance of reoccurrence simply due to funding -ie not safety issue
I started chemo in June but hit my year anniversary in April (when surgery happened)
I completed active treatment mid Nov (radio) so will ask what is meant by starting within the year
Maybe it gets approved in time for me 
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Hi @shannon27, it is a treatment after you have had chemo and surgery. I started mine at a similar time to when I started the hormone blocking drugs
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@idcand49 Hi, understand your frustration. The oncologist is correct though, it isnāt approved yet in Europe for primary breast cancer (,just metastatic). The US approved in September and European authorities gave a positive recommendation to extend its use for primary breast cancer. Unfortunately, the process takes a long time and so likely will be Spring before final decision made and full approval
Hope you get the opportunity, I do realise I am very lucky to have the opportunity.
Hi @idcand49, my oncologist said within a year of treatment would be a year from my last day of radiotherapy (I had chemo, surgery, radio in that order) so my understanding is that it is within a year of finishing all treatment (apart from hormone blocking tablets). I hope your oncologist confirms the same for you, all the best x
Dear all,
Yes, my oncologist said the same. One year from end of treatment, (apart from hormone tablets etc). So last radiotherapy for me
All the best
@idcand49 what is approved is Abemaciclib which is very similar from my understanding to this drug. There are still criteria to be met but treatment now is to prevent recurrence. The side effects reported are similar however I have experienced very little side effects.
Good point @sl255. Only thing to add is that I donāt think Abemaciclib is approved for node negative disease.
It was officially approved by the EC early Dec:
The European Commission has approved Ribociclib (Kislaqi) in combination with an aromatase inhibitor as an adjuvant treatment for patients with hormone-receptorāpositive (HR-positive) HER2-negative early breast cancer at high risk of recurrence, according to a press release from Novartis, the developer.1
Itās on a cancer network site so may ask my onco what that means re NICE approval (at my appt it hadnāt been approved by the EC so maybe that changes thing)
Will defo ask about the yearly deadline again as everyone here seems to have it based from LAST active treatment not first
I know these drugs come with consequences but I also know the risk reduction is a lot too
I didnāt qualify for the other -Abemaciclib
I was node + but has to have:
Tumour over 5cm (mine was 3.2)
Grade 3 (mine was grade 2)
X
Hi
Thanks for the info, sounds encouraging.
Good luck
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Oh yes thatās correct.
Hi ladies, I have just returned from my oncology appointment and was expecting to start chemo at the beginning of January. I found out today I am starting Ribociclib intwo weeks instead. Unfortunately my cancer has spread to my lymph nodes and has wrapped around vessels so currently inoperable. I am expecting to be on this for at least nine months, then hopefully op, chemo and radiotherapy. I start my hormone treatment in a couple of days. Oncologist is hoping it will be available for me to start again post surgery etc.
Glad to have found thread with others on this medication 
This conversation is so interesting. I too am in the lucky position of having private health cover through work.
I am on Letrozole and start Abemaciclib in a weeks time (primary grade 3 (now 2) limited nodes) and dreading it because the side effects are said to be worse than Ribociclib mainly due to the dose that we start on (no studies have been done on the efficacy of starting on a lower dose even though it had the same efficacy if you move to a lower dose subsequently).
I have been holding on to the hope that Ribociclib would be licensed for use in the UK in April and then I would be able to move to this. I am wondering how your insurers and have cleared this and whether I would have the same option.
Thank you
Hi jbb, Ribociclib is already licensed for private use in the UK, my understanding is that the April date suggested is likely to be when it will be approved for use on the NHS for primary beast cancer. My oncologist applied to my private health company (BUPA) who have approved it.
I only started taking it 4 days ago (400mg, 2 tables daily) - so early days yet, the only side effect so far is a bit of heartburn/indigestion. Wondering how long into taking it any other side effects might start?
I have been taking anastrozole for just over a year - with minimal side effects, so Iām hoping that adding the ribociclib in wonāt cause too many additions.
Iād go back to your oncologist and ask them to request approval for ribociclib from your private health company.
Best wishes
@Valanne @jbb
Hi, good to hear from you both and glad all going well @valanne.
@jbb as valanne says you need to ask your oncologist to contact insurer and ask them for approval. The fact the drug is approved by the regulators helps and the 4 year trial data is very positive. My oncologist filled out a form then insurers (BUPA) came back to her via email asking for further info, then they approved.
I have now completed the drug part of cycle 1 and cycle 2 starts on Thursday. Fortunately not many side effects, all minor and may not even be related. For day 2-4 had a headache but only took ibuprofen once and then one day mid cycle. Family had colds so picked that up and whilst it lingered a bit longer, was no worse than colds had before. Oddly day after stopped taking it, got itchy knuckles and slight rash. Other than that all good and mid cycle ECG and bloods all fine.
@Valanne interesting you mention indigestion, I had that a couple of times but hadnāt twigged might be related, good to know. Hope rest of cycle 1 goes well.
@jbb hope you get approval.
All the best.