Rico

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Hello,

I was diagnosed in January with HER2 breast cancer grade 2 which spread to a sentinel node. I had an operation in May and took Letrozole from the start.

a sample was sent to the US for oncotyping and the chances of this cancer spreading are almost null.

I'm also a candidate for Ribociclib for the next 3 years 

I've strong misgivings about it, it looks to me the side effects outweigh the benefits.

Anyone on it who could tell me what the benefits are.

Thans

  • Hi there.  I wonder why they suggested Ribociclib if the chance of spread is nil?  Also I thought Ribociclib was for ER and PR+ cancer and not HER2+ cancer also the same for letrazole.  Have you asked your oncologist why they recommend Ribo?  I have been on it for coming up 2 years and it does have plenty of side effects.

    Lee x

  • Hi Lee,

    Thanks, good to know. Something doesn't sit right with me, that's why i didn't sign the consent form and ask some more time. 

    Take care of yourself 

    x

  • It doesn't sound right, maybe there is more to it.

  • Either i misunderstood something, you know how it is, they throw info, data etc at you but my partner was with me and he hasn't got foggy brain, or it's a funding issue.

  • From the drugs you have been offered and the fact you have had an oncotype test, I would think your cancer is oestrogen responsive (ER+) not human growth hormone responsive (HER2+). Letrolzole and pablociclib is a standard combination treatment for this type of cancer and very effective. Your oncotype score is presumably lower than the cutoff for recommending chemo. All treatment decisions are a question of risks and benefits. The benefit of this combo is generally a reduction in the risk of it coming back. Your oncologist is the best person to help you decide whether it’s worth it in your particular case. 

    A funding issue wouldn’t cause them to recommend a treatment! 

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  • Thank you for the support. The breast cancer was 18mm grade 2 NST, ER8 PR8 HER2 negative (score 1+). ER8 in the sentinel node.

    It's difficult to decide as the benefits are speculative but the 3 years side effects very real. 

    Take care 

  • Hi  

    In saying ER8 in the sentinel node, does that mean there was cancer in your sentinel node? If so, have your team quantified the risk from that? 

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  • Yes there was, the all chain 1 to 3 was removed but only the sentinel was affected.

    I've asked to talk to my cancer nurses, i'll ask them, it's good to narrow the issue down thanks.

  • So it is hormone positive not protein positive, that is why you are on Letrazole and they have offered you ribociclib.  My cancer is hormone positive as well that is why I am on ribociclib.  Also they will probably offer you a dose of 400mg which has less side effects than the full dose of 600mg.   Hard decision as you say.  Good luck.

    Lee x

  • Thank you. I naively thought that after all the tests, the op, the radiotherapy and taking the hormone treatment for 7 years, it will be the end. Having gone so far, i suppose i should put all the chances on my side.

    Take care

    x