Forgot to say Ribo gives me the opposite of diarrhoea especially towards the end of the cycle. And sometimes stomach ache
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Thatās my biggest problemā¦ painful muscles in my legs and bottom and joints just aching all the timeā¦ and Iām only Cycle One!!
Iām on anastrozole and Iāve been fine so farā¦ good luck everyone. We will get through this !! M xx
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I think the joint pain is from the lack of oestrogen in our bodies. Iāve been on Letrozole since my appointment after last chemo. I had a two week break while I was recovering from radiotherapy as the painful joints were disturbing my sleep.
Youāre right though - we will get through this!
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I had my blood tests, ECG etc done today and am due to pick up the tablets for cycle 1 tomorrow. The nurse flagged some things my oncologist hadnt (even tho I asked if I just take ribociclib (yes) or have to take any other tablets too to counter the ribociclib side effects (no) which I wondered if anyoneās experienced on the 400mg/200mg dose?
- if blood count goes really low, need a blood/platelets transfusion
- diarrhoea so bad it needs medication (Iāll get some to have at home)
- nausea that needs anti sickness medication (also provided if needed)
- dietician appointment bcs Iām taking ribociclib, not sure what to discuss.
Any tips from those whoāve taken a few cycles would be great, thank you!
Hi Lola, Iām now starting cycle 20. I havenāt needed a transfusion so far, but neutrophils have been low a few times. They prescribed me diarrhea meds for the first couple of cycles, but I never needed to take them as I didnāt have that as a side effect. I sometimes take an anti sickness tablet, metoclopramide because I sometimes have nausea, but most of the time I manage it with eating small meals, ginger tea and acupuncture. I havenāt been referred for a dietician appointment, but if you are underweight perhaps it would be helpful? Could also ask the dietician for advice on eating if you are nauseous? The only foods I was told not to eat are grapefruit and pomegranate as this can interfere with the medication. Hope your first few cycles go well 
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Thank you Jess, thatās reassuring, especially as youāre so many cycles in. I started today so now just need to see how it all goesš¤
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So glad Iāve found this thread Iāve just been for my pre assessment today and Iām due to start Ribociclib on Friday with Letrozole and Goserlin. Iāve just been diagnosed with a local recurrence on the chest wall and in a lymph node and was dreading the thought of chemo all over again but they have put me on a Ribociclib path instead to see if they can shrink and remove the tumour.
I had a mastectomy and chemo followed by 5 years of tamoxifen in 2017. Finding stories about peopleās experiences so far is really helpful so thank you all for sharing.
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Hi all
I am due to start Ribociclib next week and have found this thread very helpful. I have had surgery, chemo and radiotherapy in that order , finishing in July this year. I am now on Letrozole and am tolerating it well especially the brand Iām on now. I am a bit apprehensive about ribo as I wasnāt expecting to be put on it but because Iām at higher risk of a recurrence my oncologist highly recommends it. Im getting it on the NHS , with fortnightly monitoring to start with. The list of side effects is daunting but have felt reassured after reading all the comments. Fingers crossed side effects are minor and blood tests ok !
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So sorry you are having to face this yet again - itās what we all dread, but so pleased it may help you avoid chemo.
I presume that most of us are taking this for three years. My fear wlll be coming off it rather than the side effects during that time.
While I take it I feel I have extra protection. I need to understand why we stop after three years eg long term effect of taking the medication. I know the studies did 3 years
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Thanks no one wants to be here Iām sure, I have been told 6 -12 months of Ribo in my case (I know Iām in a bit of a different situation to most of you but Iām lucky (if thatās the word) itās a local recurrence thatās it seems has not spread anywhere else) they just want to try and shrink the tumour and remove if they can then hormone therapy for life if I can tolerate it. I have had the most amazing 7 years since I last finished treatment travelling all over and I intend to continue- if cancer gives anyone anything positive itās a kick up the backside to enjoy every minute of life xx
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I think that is a completely normal feeling whilst you are being monitored yo ufeel safe - when I finished chemo last time it felt like Iād been left to kind of drift on without any safety net if that makes sense.
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Iām on 7 day break of first cycle of nhs ribo and happy to report that Iāve experienced no side effects as yet. Bloods have been normal.
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I start this Fri!
Well, I collect the tabs. When do you take ir to avoid nausea/ fatigue ?
The nurses have said itās not like chemo.
Side effects donāt build so that seems like good news x
Iām on day 7 of cycle 1 and take mine in the evening as thatās when Iāve been taking letrozole. They suggested morning was preferable but when I asked why it was just as people remember better to take tablets in the morning rather than bcs of the medication.
My only side effect so far is a nettle like rash on part of my hand that started on day 4 which Iām now taking an anti histamine tablet for, which seems to be working. Will see if that clears or not. I havent taken the anti sickness tablets as I wanted to see if I felt sick first (I havent).
Hope it goes well for you too.
Like @lola25 I take mine at night when i take my letrazole. It has not made me feel ill at all. I had an ulcer but it went with mouthwash and coukd gave been unrelated. I know some people do get some side effects, and there is a lot of blood monitoring, but my dr reassured me that it is well tolerated by most.