Thank you Lola, that is reassuring. My main concern of course is that my levels won’t go down and I won’t be able to have any ribociclib at all, which would be devastating. I find that I panic very easily these days x
Hi Sammy
Not drinking is one of the things I find hardest- at a time when I could really do with a drink! Every so often now I buy a can of wine - instead of sharing a bottle- just to limit my intake. I had a can of Rose at the cinema last night - which was stupid because my liver results are high. But I was just so frustrated/angry/sad about not getting my ribociclib. Enjoyed every drop x
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How to your find your day to @agathac do you carry on as normalx
I am currently having chemo. Did you have chemo as well if you dony ming me asking. Taking cdk adds an additonal 3 to 4% after chemo so deciding if its worth it. I dont want to live at the hospital and need to return to work full time and not take time off as will have been off for 10 monyhs by the time I go back
I am just reposting a response I added a while ago.
My ALT was over 200 and when I dropped to 200mg dose initially my ALT was higher than on 400mg! It took about 10 months to settle and for my liver to stop being angry 
@sammy75 With regard to alcohol, like @lola25 I was told to try and drink no more than 5 units a week to minimise recurrence. I didn’t drink a lot but like others have said, wine at the weekend is nice (and haven’t found anything that has the taste of a full bodies red). So post radiotherapy I more or less stuck to a g&t and a large glass of wine at the weekend. When I had my ALT issues, I then stopped drinking for 6 or 7 months.
Now it has settled, I enjoy some wine the first weekend of of treatment but avoid the rest of the time. I will probably start to increase a little but stick within the 5 units and avoid the 3rd week of treatment as that is when levels are likely to be highest. I have missed my glass of red, but not as much as I thought and only 3 years. Likewise will be glad when done but important to me to give myself the best chance of it not recurring.
@sammy75 will contact one to one later to chat.
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It didn’t work so copy and pasted instead
Don’t worry about dropping to 200mg. I have been on ribociclib since last December and had issues with ALT. I had to drop to 200 and like you was worried. The clinical trial data showed it was effective, but still concerned so asked my oncologist. Essentially, you are either a fast or slow metaboliser and if you are a slow metaboliser, it takes longer to metabolise (process) and excrete (get rid) of the drug. The way I think of it is that as slow metaboliser, effectively getting a higher dose (as it takes longer to get rid of it), hence why effects on liver, blood etc. So, 200 for me, is the same effective dose as 400 for fast metaboliser.
Liver may take some time to settle, even after dropping to 200, it took a bit of time tfor me and only in the last couple of cycles has it been 'normal/close to normal. For me, I avoided alcohol, drank a lot of water/squash and try to get as much exercise
Thank you Bordercat. I’m just at the beginning of high ALT after 3 months of being ok. So know that there are options. Feel better now about the 200mg. I’d much rather have that than nothing which is my biggest concern.
How long did you have breaks for before your liver results came down? I’m only missing one week so far - next bloods on Tuesday x
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@bordercat that would be really nice thank you 
Hi Sammy
I was oncotype 26 so offered chemotherapy but said no because I was so borderline. And the ribociclib seemed a very good alternative. I’ve had no side effects at all. Xx
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@agathac Don’t beat yourself up. It has to be a balance, no point living for ever if miserable. Shortly after I was having my. ALT issues I was in Italy with family. It was a sunny day, at a bar by the sea and they were having beer. I was very envious, decided stuff it and had a small one. I figured that if that small amount was going to cause issues then not feasible over 3 years to take it!
Cancer treatment is as much a mental battle as a physical one and so tough to know what to do sometimes.
Hugs
O wasnt given an onco score I did ask about it but dont think my area did them them.
They have said I dont have to have it like you turned down chemo. Chemo added 5% to my 10 year survival and cdk add 3 to may 4%. Im already at 90% after surgery chemo and radiation and hormone so rather strong anyway. This is just an extra layer.
Im struggling with chemo so he said i could stop and go onto this. So im worried how bloodly strong is it. But you guys are living normal lives
Everyone seems to have different experiences with side effects. I’ve had nothing at all which is why my liver results were such a shock. I’m also on letrozole with no side effects but have friends who’ve had to come off it because the headaches were so bad.
I’ve heard that there can be up to a 28% improved chance of non-recurrence with ribociclib which is huge.
I would definitely recommend getting it and trying. Could be an absolute life changer. Love to all x
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Thank you Bordercat. Your words are always wise x
@agathac my oncologist said it would add just 3 to 4% to my survival rate over 10 years. Maybe im goung to far ahead. My anxiety in chemo alone is throuth the roof x
@agathac Cancer has been a good teacher, especially with regard to mental health!
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No body has gone through reaccurrence with me!!! Just survival rate. Is this the same @agathac
As I understand the percentages, ribociclib reduces recurrence in absolute terms by 3-4%. The 28% reduction is of the risk of recurrence. So the trial data shows 12-13% of people having recurrence out of 100% when they just took letrozole, 9% having a recurrence with letrozole and ribociclib, so the 28% reduction is of the 13% recurrence rate to 9% recurrence, if that makes sense?
I specifically asked about my recurrence risk (rather than the trial data) but my oncologist only wanted to talk about the survival rate. I went down a bit of a rabbit hole with all the numbers tbh before deciding to just try it and see how it goes…
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And how are you finding it @lola25 . Do you mind me asking did you have chemo as well like me??.
I am losing control. Only done one chemo and in a mess. I just cant do 2 to 3 years of not having a life.
Hi Sammy75, I didnt have chemo as onco score was 16 so was told I wouldnt benefit from it. Cycles 1-3 of ribociclib were ok, cycles 4-6 werent very settled with different side effects/aches popping up so I tried 200mg dose last cycle but it didnt make much difference tbh so went back to 400mg this week. Bloods have generally been fine except at the end.of Dec when the lfts went high for a week so I had a 2 week break when I felt really well.
I’m glad I’m on it, just hoping it settles more into the background now.
@lola25 thank you for reply. So you live your life as normal then. I just think after chemo and radiation and hormone plus i had a full mascetomy enough is enough. But will i kick myself. Think im worrying too much ive got to try and get throigh chemo first xx
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I was stage 2 with a grade 3 tumour and micro-mets in one node. They gave me a lumpectomy and after an oncotype test, recommended chemo.
Chemo is tough but hopefully you’ll get through it like I did. It’s good that you’re aware of what comes next, as I stuck my head in the sand a bit and was shocked to realise that I’d be on a cdk inhibitor. However, I found that trying to focus on one thing at a time helped me cope. I followed a few previous chemotherapy monthly threads which gives you a heads up on what to expect.
My experience of Ribociclib has been varied, but I’ve worked throughout. It’s nowhere near as bad as chemo.
Best wishes for your treatment.
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