I just started a new job so please post how you get on.
I start 12 Sep (would have been next week but we are now on holiday)
X
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I am on day 15 of my first cycle. First week or so was fine, mouth very slightly tender but nothing major.
After 10 days I developed a lot of crampy tummy pains, not sure if that was related to a very spicy curry that I had! Itās gradually improving now.
I do feel slightly less energetic than I did before starting, but am keeping an open mind as I think side effects of most medicines reduce with time as your body gets used to the drug.
Iām planning my return to work (hospital doctor) and my consultant suggested not going back til Iād done the first two cycles. Based on my experience this week I may extend that to three, just to be sure. I couldnāt have worked this week, and donāt want to go off sick again as soon as I start back!
Time will tell.
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Iām due to have the blood tests etc on 1 Sept then start taking it. Also nervous about side effects and hoping it will be manageable round work, kids etc so very interested in how everyone is finding it.
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Can I ask what made you feel you couldnāt work?
And how long ago was active treatment?
If Iām being too nosy sorry in advance
I really canāt take time off
I finished chemo in Oct, radio late Nov & starter Letrozole / Zoladex then
Iām hoping as itās been a while & I feel a bit more like me in the last few weeks that the break btw active & this will help
Or is it wishful thinking ? Xx
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No problem, I had one day in bed feeling really wiped out with bad abdominal pains, but it could have been the combination of the ribo and a spicey meal. Iām hoping this is a one off as Iām much better today, just a bit more tired.
I finished chemo at Christmas and radio in March and was feeling pretty good on Tamoxifen, doing lots of exercise and running around after my three teenagers!
Just getting my two week ECG and blood tests done this afternoon 
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Hi All,
Just to reassure those starting soon or recently started. I was diagnosed May 2024 started 5.5 months of chemo (plus zoladex) followed by surgery and then radiotherapy - i finished active treatment in December last year.
Started Letrozole & Ribo in January this year and have just finished cycle 8. First two months I was a bit more tired as my body got used to everything but for me keeping active, eating and keeping really well hydrated is doing wonders - it relieves any joint pain and keeps fatigue right away. I do find in week three of Ribo I can feel Iām a little more tired but nothing to the extent that it stops me from doing anything.
I am working full time - and did through active treatment too - this certainly hasnāt got in the way for me. Travelling, being social and enjoying holidays and life generally as much as I can!
Donāt get me wrong - itās no picnic all the time, but for me personally so manageable, not stopping me from anything and so positive given the recurrence risk reduction!
Love to all xx
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Keep us posted
Hopefully the tummy upset was a one off
You mention tamoxifen ā¦ I was told it has to be an AI? Iām on that with ovarian suppression - if I can switch I might
And know what you mean re 3 teens
We are moving the middle one to uni late Sep so no rest for the wicked
lol
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needed to hear this x
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Quick q
How often are you blood tests now? X
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I switched to Letrozole from Tamoxifen, also on ovarian suppression, although chemo stopped my periods (Iām 52)
Definitely loads better today.
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This is so good to know, thanks for sharing. I really want to be able to take this for the 2-3 years recommended xx
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Hi, interesting to hear of your side effects, as Iām on Day 2 of Cycle 1 and have not noticed anything in particularā¦ did you get any nausea? What were your blood results two weeks into your first cycle?
By the way, I donāt believe we should take ibuprofen whilst on Ribociclib, just paracetamol.
I stupidly read the side effects yesterday and sat waiting for one of them to hit me 
in a state of panic!! 
I have to come off my nightly amitriptyline, which is a bit of a pain, as it helps me sleep. Hey ho!
Good luck to everyone and I hope I can get this prescribed through my GP soon, as it has been approved for the NHS, which might help to keep out BUPA premium lowerā¦ fingers crossed 
m xxx
Hi 
I got my BUPA approval and started the Ribociclib yesterday, the same day I stupidly sat and read all the side effects in a state of rising panic waiting for any of them to hit me (which they didnāt, not even nausea)! I must remain cynical in the face of the cancer diagnosis, in the knowledge that medicine manufacturers MUST put every little pain and pop in their list, in case it misses one and gets sued and so, not be too worried.
Itās Day 2 today and I feel no different at all. Iām 62 and found it amazingly easy to come off my beloved HRT and had pretty much no real problems with the Anastrozole. So Iām hoping the Ribociclib recognises that, I am probably brain dead and not bother to utterupt my state of la la la la la by giving me side effects. 
I donāt like the idea of all the blood 
tests we have to have, she took SOOOO much on Monday!?!! But, at least it ensures the dosage is correct and all levels are safe. I was low in potassium, so theyāve topped me up on that.
I just want it all over really, at which point I will be 67ā¦ but hopefully with several healthy years ahead of me, with less of the spectre of cancer hovering over me. Then there are the buses 
I need to look out for ā¦.
Good luck and I hope too to move over to NHS prescriptions. M xxx
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Great to see so many people starting Ribo and some on the NHS too. Thatās great and wishing you all the best.
Just wanted to echo/agree with comments from @hikera
I started in December 2024. I am on Cycle 7 now. Had issues with liver enzymes and now on the lower 200mg dose and 5 week cycle (2 weeks off after doses). Just had 1, 5 week cycle but hoping that does the job moving forward. Monitoring has been quite intense, but in a routine now and I work while waiting for my results. Any side effects have been manageable, likewise get a bit more tired in week 3. Working full time, travelling and not stopping me doing anything. Only major change in routine is I am lot more aware about washing hands/food, bit like COVID times. I always have my hand sanitiser with me at all times.
Hope all goes smoothly and all keep well
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Iāll echo everything that has been said by the others who have been taking it for a while.
Cycle 7 for me. Have worked throughout - if you read our old posts you may get a feel for our experiences.
Blood tests are a pain but youāll soon move on to bi monthly.
Letrozole was more of an issue for me but that has been partly resolved with a change in brand.
Hope all goes well for the new starters. A friend of mine had to discontinue due to side effects but really most patients are absolutely fine apart from the occasional blip.
Iāve increased my exercise and that may have have helped. I have fingers crossed that it continues to go like this and I donāt develop an intolerance or side effects like the hayfever feeling described above.
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Iām also a prospective NHS ribo starter. Was due to have abemaciclib but still having problems with slight diarrhoea, so my oncologist seemed eager to put me on ribo instead.
Iād love to find a solution to my aching muscles and joints. What brand of letrozole did you switch to, please?
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Hey jbb - Iām on cycle 6. Itās worked great for me. Diagnosed with Her2+ stage 4 metastatic with disease in my liver, chest wall and lung. Most everything is considered too small to measure and I am feeling great. Iām on Letrozole since I wasnāt quite in menopause yet and doing fulvesterant. My one complaint is that my finger tips are peeling. This has been a constant thing since March. Trying not to get too bummed about it since Iāve been doing well otherwise. Anyone else having that issue? What have you done? I feel like I have tried almost everything.
Trista
mels - totally with you on this. I was diagnosed in January with Stage 4 metastatic Her2+ with disease in my liver. My doctor is amazing and Iām doing really well on Kisqali (ribociclib) and fulvesterant. After the initial WTF - I chose to look at this as a chronic disease. Iāve been warned that this is a lifetime illness. Turning 51 next Friday and just trying to embrace the blessing of doing well when so many arenāt.
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I am using Femara, but it is expensive. Ā£130 a month if you have a private prescription.
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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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