Letrozole and Ribociclib

This is both insightful and helpful! From someone who's into their second week of leterozole and will be starting ribociclib soon! Thank-you!

Hello

I have been on letrozole for a year and Ribociclib for 9 months. I had aches and pains for a few cycles of letrozole but this has subsided dramatically. I was reluctant to start Ribociclib when I read the list of side effects but frankly have had very few and now have none! I’m happy that I carried on with both meds . I know it’s different for everyone but it can be worth persevering. I hope your journey goes well. Xx

Thank you Pollyanna - this is really positive to read. I have been on letrozole for over 12 months now but will be starting Ribo in a few months once I am done with Olaparib. 

I am most worried about the potential hair loss/thinning since my hair is only just growing back!  I know it’s relatively early days but do you have any experience with this? 

many thanks 

Kirsty 

This is so good to hear! Thank you for sharing. 

Hi Islander82,

As you say, it’s early days yet for me regarding hair loss/thinning, and, because it was only signed off for people in my situation last October, most of my group of ‘gals’, who I’ve met through MacMillan cancer support, haven’t really heard of Ribo,  let alone taken it!  So I can’t offer any insights from others I have been in contact with either.

All I can say at this point is, my hair has always moulted in Spring and Autumn, (my husband says it’s likely I’m part wolf), and my youngest child was known for saying ’Mummy’s moulding (moulting) again’, whilst picking the loose hairs off my shoulders! I don’t feel this Spring moult has been any worse than normal, but perhaps time will tell.

I’m very grateful to have been given and been able to tolerate this medication, but I completely understand your feelings about hair loss.  For me, the thought of loosing my hair is about people looking at me as ‘the woman with cancer’, which frankly, is ridiculous.  I shouldn’t care how anyone looks at me, it’s my fight, my journey, and my right to do anything that helps me live a long, healthy and cancer free life, by taking medication, regardless of side effects.

Should I experience hair loss in the next few years, do I hope I remember what I’ve posted here regarding not caring!

With my very best wishes to you, Kirsty,

Pollyanna x

Thank you too, Karlou, for such a kind response to my post.  Keeping going if you can, but take a look at the OPTIMA trail results from UCL, (presented in Chicago on Saturday).  Makes interesting reading, for any of us with hormone positive cancer.

With very best wishes,

Pollyanna x

Hi Raimdd5081,

Thank you for your comment on my post, I’m delighted to hear that you’re happy that you carried on with both meds.  I hope our positive posts help others to feel more comfortable in trying these medications.  Given the UCL OPTIMA trail, the data for which has just been released, these medications appear to be the way forward.

I’m doing well and I hope you are too.

Pollyanna x

Thank you so much Pollyanna, I am due to start those after my Radiotherapy. I will freely admit that I felt a little overwhelmed at the thought!

It is very thoughtful of you to share your experience and insights. Reading yours and others experiences has made it less daunting. 

All the best for your treatment

 Schmoodle

Hi there, I'm Fiona and was diagnosed last year with metastatic breast cancer and put onto Letrozole almost immediately. I was then put onto Ribociclib after a lung biopsy and confirmation of the spread. this is my first "jaunt" into breast cancer as all previous mammograms had been negative. I turned 60 in April and as I had the beginnings of arthritis in my fingers, I was already taking Glucosamine for joint stiffness. I have hair thinning and loss sue to the Letrozole but can still go out with just my biohair, but when going "out out" i wear a wig which makes getting ready SO much quicker so I have decided to embrace that side of things. Apart from low neutrophil counts at the end of my cycles, I have no other side effects of the Ribociclib. I was started on 600mg daily but am now on 200mg daily as a result of the neutropenia. I get my bloods checked every fortnight at the moment but CT Scan in January and April showed slight reductions in both tumours.  My next CT scan will be July so we'll find out if the 200mg dose is keeping things in check. Fingers crossed it will be. 
Wishing you luck with your treatment. 

Hi Phoeb Ns26, Fiona,

Thanks for reacting to my post, it’s very interesting to read about the reduction of your Ribociclib dose.  When did they do that (if you don’t mind me asking)?  Was it before you had your January and April scans?

I was started on 400mg, and after the first two weeks of the first cycle, have had to have weekly blood tests, even up to my week ‘off’, but my oncologist has never mentioned reducing the dose.  

My white cell count has not ‘crashed’ as such, but neither does it pick up much on my week off.  I gather this is the reason for repeat blood tests, as it’s always expected your count will rise during your week ‘off’.

Last week, my oncologist reviewed the whole spectrum of blood tests I’ve had, and concluded that, although I’m somewhat under protocol levels, he’s happy I continue at this time and we can now go to blood tests every two weeks.  I can advise that this made me a very happy bunny.

Discussing the above with my GP, he said ‘marvellous, your oncologist is practicing human oncology, not protocol oncology, I’m delighted’.  He’s delighted?  I’m just delighted to go from once weekly blood tests to fortnightly ones!

I love the fact you’re rocking the wig!  You go girl!

All the best for your scan in July, I have my (arthritic) fingers crossed for you already.  Please post here to let us know how it goes.

Pollyanna x