Ribociclib side effects

Hi, Nello, Iam on Ribociclib along with letrozole, denosumab &zoladex injections. Personally I have coped quite well on these medications. I have found eating before taking Ribociclib helps to keep the nausea at bay. Always have ginger biscuits to hand or a lemon & ginger tea. I do have itchy skin on my hands & legs but I use either an aloe gel or shea body butter to help with that. The combination of medication I have does cause the aches & stiffness in the joints. Keeping mobile helps to ease this. 

I have invasive lobular breast cancer & secondaries to the bones. Ribociclib has shown to have diminished the cancer in the breasts and shows some healing in the bones. It is keeping me stable. I have to have monthly bloods done. Ribociclib is a 21 day medication with 1 week break. I am on 600mg.  If it doesn't agree with you  your oncologist may drop it to 400mg. 

I understand that you want some breathing space and you probably feel overwhelmed with all the information. You have been through so much. I wish you well with your next stage of the treatment plan xx

Thanks Lily, I think today is a bad day and I sometimes find it difficult to sound off to my family and close friends. They don’t understand - and I hope they never have to. It’s also that finishing of one stage and now having to concentrate and absorb all the information that come with the next. 

best wishes and wellness to you x

Hi Lily5 reading your post, it could have been me writing it.  I have invasive lobular breast cancer with mets in bones too.  I am on Ribociclib, Exemastane as did not get on with letrozole and denosumab injections.  I dont have the zoladex injections, I am guessing you are quite young.  I had lobular breast cancer 12 years ago aged 47 and had lumpectomy, chemo and radiotherapy and tamoxifen.  Last year it came back with extensive bone mets.  How long have you been on this treatment for , I am on my sixth cycle and seem to be tolerating it pretty well.  I would try the Ribociclib Nello as I hear they have good results and keep the cancer from reoccurring.  I think the dose is a lot less than the 600mg.  Sending you both hugs.

Lee x

Hi Leelaloo

I was diagnosed a month before my 50th birthday. I have been on my treatment plan for 14 months. Also I was peri menopausal hence the Zoladex injections. 

Due to my mets I was put on first line of treatment rather than having a masectomy. 

I originally was sent for a mammogram as I had what felt like a small lump in my left breast. They couldn't see anything but what they did see was a mass on my right breast. In January this year I could feel two small lumps on my left breast. Breast Mri & biopsies showed cancer cells next to a benign lump & cyst. 4months on after another breast MRI scan the cancer has diminished.  Therfore the sneaky cells were there but not seen from my first diagnosis. That is what lobular is, sneaky and does not always show on scans. I am grateful that the treatment keeps me stable and I am tolerating it. 

Sorry to hear you are back on this road of ILBC. Sending you hugs xx

Hi Nello,   i am in a very similar situation and really nervous to soon be starting Ribociclib after reading all side effects and also to now have lots more hospital visits.   
i have advanced breast cancer which is HER+ which unfortunately spread to 1 spot on my spine.  I am 59. 
I have just completed 6 months chemo in March  (fantastic response and told cancer clear on breast and spine  ).   This was followed 6 weeks later by a bilateral mamoplasty operation.   I have recently started Letrozole (side effects so far - dry mouth and trouble  sleeping) 
  I am starting radiotherapy on breast and spine next week.   Then the plan is straight then onto the ribociclib after radiotherapy.  Thanks to the chemo i now also need to have impacted wisdom teeth removed before i then start Zometa .   

Like you i now just want you be left alone and get my life back to ‘normal’ and time for my body to properly recover,   And if one more persons says how well i look i will scream as i dont feel ‘fine’!  

Wishing you best of luck and that you tolerate it well and sorry i am no help with side effects but your post was so timely to my feelings.    

You are not alone and this drug does have good reviews to keep the cancer from returning.  

Thank you - it’s so hard isn’t it. People mean us such good wishes and remain positive for us - but inside sometimes, we’re just screaming - with a smile on our face xx

Hi Nello I know what you mean, because you don't look ill, people assume you are okay and say how are you?  I just say fine but inside like you say, just screaming.  And if one more person says ' Be positive, you have got to be positive',  I think I will punch them in the face.   Good job we have this safe space we can vent.

Lee x

Definitely. Or we’d be locked up by now. Prisoner haircut already done

Hello Nello I am Ribociclib I have ER breast cancer had a lumpectomy and lymph nodes removed followed by 19 radiotherapy sessions  in 2022 and onco score of 20. Unfortunately a year later I complained of back pain and it was discovered I had mets in my spine and ribs. I had an operation to prop up a vertebrae as it was crumbling, without the op I would have been paralysed  I have been on this med along with fulvestrant and denosumab  since November 23 and everything remains stable. I originally was on 600 mgs daily but this has been cut down to 200mgs as I had lots of upper respiratory infections. On the whole I now tolerate quite well and I do have joint pain but try to keep moving as well as occasional nausea and a hair thinning which is starting to grow in. For me so far so good now I have got used to it. Fingers crossed it remains stable. Best wishes on what you decide next 

Hi Nello

I recently finished my 15 days of radiotherapy and also was somewhat ignorant of the impact the drug regime would have.

My oncologist is prescribing Letrozole and Ribociclib which is a change from the original plan of abemciclib but apparently more effective.   However the Ribociclib initially will be prescribed monthly and I will need a blood test and an ECG each month, so that is two hospital visits.  Ok it's better than the fortnightly chemotherapy and the daily radiotherapy but I'm really fed up with it,  worried about side effects again and feeling like life is still on hold. The Oncologist talking about reoccurrence rates and percentages didn't help me either.

So June will be a total of 8 hospital appointments! ( last 4 radiotherapy,  oncologist,  bloods and ECG, MRI to check spine and Zometa and starting Ribociclib)

Wishing you well and knowing exactly how you feel, sending hugs xxx