Ribo

Hi

I had a double mastectomy and diep flap reconstruction in September and radiotherapy in Jan, all of my clinic letters state to have letrozole and an also eligible for cdk 4 inhibitors, my oncologist said about it at my first consultation when he was discussing radiotherapy, he told me to research it which I have. At my last appointment he told me I was brave to have it due to side effects, amount of appointments required and said the research isn’t clear about benefits, I am left wondering what to do now, I just wanted to give myself the best chance and he made me feel stupid, any advice would be welcome. Thanks

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Hmm sounds like your oncologist needs help with his bedside manner. Radiotherapy is really no big deal and it is worth it for the extra protection. Letrozole is another matter, side effects can be ghastly. I gave up after a year and switched to anastrozole which I found marginally more tolerable but I abandoned it after a further year. Best advice I can give is research the hell out of it and decide what works best for you. Knowledge is power. And always try the tablets - some people find them trouble free.

You are not stupid at all he should know better. These lines of treatment are challenging all we expect from being in the Metastatic Cancer club. I had a life expectancy of 12 months without it. I now hope to have years. I am on my first line of treatment this time around

Palboclib oral

Fulvestrant injections

Densunab injection

Yes I had / have some fatigue and tummy upsets early on but 3 month in and it’s calmed down and very doable.

I’m having my first scan in 10 days to see how I’m responding to it so fingers crossed.

A little info here

CDK4/6 inhibitors are targeted cancer therapies (palbociclib, ribociclib, abemaciclib) that block enzymes regulating cell division, primarily used alongside hormone therapy for HR+/HER2- breast cancer. By inhibiting CDK4/6, they prevent cancer cells from growing and dividing, effectively stopping disease progression. These oral medications have revolutionized treatment, particularly for advanced metastatic breast

This info is readily available so I’m really surprised at your consultant.

I wish you all the best. X

Hi there. I am sorry your oncologist has said that. My experience of ribociclib has been fine. It hasn’t affected me at all with any major side effects. The extra appointments at the start were not that bad, just monthly. I’m on 3 monthly now. My bloods have not been affected at all. I am so happy to be on it as it can reduce my risk of recurrence. Speak to him again. You need to decide if the risks are less than the benefits but for me they were. Good luck.

Hi lizzie206,

Thank you for your post.

It’s understandable you are wondering whether to a take a cdk 4/6 inhibitor (cyclin dependent kinase) such as abemaciclib and ribociclib as part of your treatment for primary breast cancer.

Research has shown that for some people, taking a CDK4/6 inhibitor along side an aromatase inhibitor such as letrozole can help reduce the risk of the breast cancer coming back (recurrence). If you do not get the answers you need, it might be helpful to speak to another oncologist as it’s important you feel supported. Do talk to your breast care nurse about this.

Like any treatment, CDK 4/6 inhibitors can cause side effects. Everyone reacts differently to drugs, and some people have more side effects than others. As @bluesatsuma shares, her experience of ribociclib has been fine and she hasn’t been affected by any major side effects. And @teddy271 says, some people find them trouble free.

It’s difficult to say how you how you would get on with it, but it’s important to know that a lot of side effects can be managed. Some people are offered a reduced dose of their treatment which helps them manage the side effects but also gain the benefit of treatment. For some people, the side effects impact their quality of life and they decide the treatment is not beneficial for them. It’s very individual.

It can be very difficult to decide what to do in situations like yours and as @unity states, you are not stupid for wanting to know more. We would suggest as @bluesatsuma says, to talk to your oncologist again and talk through the benefits of this treatment and how any side effects you experience might be managed. It can often help taking someone with you to the appointment together with a list of questions you want to ask.

Talking to someone who has had a similar experience can often be helpful and our Someone Like Me service could be a useful support for you.

The service offers you the opportunity to talk with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to help answer your questions, offer support and listen to how you are feeling.

You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

It can often help talking things through and you are very welcome to call our helpline.. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

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Best wishes,

Helen

Breast Care Nurse

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