Kisqali and letrozole

Sorry that should have read diagnosed, not discussing,, 

I have stiff joints but have found that the more I exercise the more I can exercise. In other words keeping mobile really helps even if you don’t want to get out of bed and walk. It tops up my energy levels if I go for a brisk walk. 

Fatigue is an ongoing problem. I’m ready to fall asleep early in the evening but not too bad first thing and throughout the day. 

Hair loss was a real issue at first but seems to have lessened over the 18 months I’ve been on the drug cocktail.

It seems as though everyone has different side effects and of different severity. I hope you have no or minimal issues. 

1. Thank you so much for coming back to me. It is much appreciated. 

It is supposed to be a very powerful drug combo if you can tolerate it. My oncologist started me on both at the same time in early Jan and it’s been really tough - I had a recent review appointment with the pharmacist and she said I should have been asked to start on the letrazole and settle with this for a few months before starting the ribociclib. Are you already taking the letrozole? The two drugs together have really affected my emotional wellbeing with really bad mood swings / anxiety and low depressive mood so I’m having a break from the Ribociclib while they work out what to do with me. Everyone is different though, I have suffered less with joint pain (it’s minimal) but I do a lot of exercise, walking, Pilates and yoga. The fatigue is worse the first 2 cycles of Ribo - some days I couldn’t get out of bed but I understand this can settle after the first few cycles. Might be worth trying and see how you get on? 

Hello Suelarue. 
I am also new to this forum and your journey is very similar to mine. I was diagnosed with Lobular last year too - Dec 23rd to be exact so it was an unusual Christmas. I had my mastectomy in January and my oncologist has also advised to take Letrozole and Ribociclib. I started Letrozole just 2 days ago so very early days. I had an ecg and due to have bloods next week both needed to start Ribociclib. As long as both ok then will start on a low dose of Rib.. 

Sorry I can’t comment on any side effects but it will be interesting to see how we both get on with the combination of these 2 drugs together. 

Hi I have lobular too.  I have been on exemastane (as didn't get on with Letrozole) and ribociclib for about 14 months.  Hair thinning has been quite distressing for me but it seems to have stopped now so hopefully it will start to thicken up now (fingers crossed).  Also as See says keeping active really helps and I walk every day.  I started them both at the same time and no real problems.  I had to reduce the dose from 600mg to 400mg as I had a bad skin reaction but otherwise okay.

Lee x

Thank you for your feedback - I have been taking Letroze for around 7 months so body has adjusted. Just wanted to hear how others had been getting on before I decide, so I appreciate your response.

Hi Louloub,

thank you for coming back to me, and sharing your story… i can only imagine what sort Christmas you had, scary isn’t it?

Well, maybe we should keep in touch and support each other through this next stage of Lerltrozole - which I have had no issues with at all and Ribo??

take care! 

Thank you so much for getting back to me. I think I will probably start the combined dose as on the whole the side effects are tolerable, and even if it offers 5% chance of being successful at slowing the cancer down thats 5% more than not taking it - right!!

Take care! 

Yes, it is definitely scary! The last few months have been an absolute whirlwind for me and my family.
It would lovely to stay in touch to see how be both get on with the drug combo.