I am on my third week of ribociclib and letrozole.
anyone else on ribociclib? I’m strughling to know what is a side effect and what is everyday aches and pains! Just wondered what people’s experiences are.
Good luck with the lower dose. Is that 2 x a day for 21 days? I'm on a lower dose but did manage 8 months on 3 a day. I'm having a meds break at the moment because I was ill last week but haven't told anyone and I'm really anxious because it feels negative.
I'm not seeing the consultant until 21 February so will start again soon. I'm caught between very poor tolerance and the need to keep the cancer at bay. The hospital offers counselling for patients with cancer so I'm seeing the therapist on Friday to explain.
I'll climb back on board HMS Ribociclib next week and brace myself for the rough ride.
I'm still waiting for the medical cannabis prescription but it is due next Friday. I'll let you know if it helps. I'm off all meds until it turns up because the headaches have been so bad, from the symptoms they're neuropathic. How are yours?
I Am brand new to this group I'm pretty new to the diagnosis. (2 mos)Yours was the first one that I happen to come across and I believe that was for a reason. You addressed so many things that I'm feeling. And put them in a way that I hadn't thought of before. I just thought it was so important to be strong people expect that. And I hadn't thought of it as a grieving process because you're no longer who you were. But when I read that I realize that's exactly where all the tears come from. , I too struggle with family as well as friends who just don't contact me and I realized they don't know what to say or do. Some days I just CAN'T.
Thank you for your insight. May God bless and keep you in your journey.
I am on day 16 of my second lot of ribociclib and letrozole. Main side effect for me is really itchy sore eyes but drops help, as long as I remember to use them regularly. My bloods were slightly affected after first cycle but are back to normal now. Will have scan in May to see how it compares to one done in Feb, after 2 months with no treatment since paclitaxol chemo stopped working. Fingers crossed. If itchy eyes is the worst side effect then I can cope!
Just to echo what has been said about friends and relatives, so many people are just inept or frightened when it comes to talking about cancer, and can act in ways which seem insensitive, rude and uncaring. We have to talk about it, and deal with all that comes with it as we have no choice. We have to be grateful for the ones who stick with us through thick and thin, they are the ones to hold onto.
You really learn a lot about friends and family with a life limiting illness and sometimes have to manage people's emotions, especially family. I've just re-read all the posts on this thread and can't tell you how reassuring they are. I hope everyone's Ribociclib treatment is going well. I'm on and off it depending on side effects but have done 17 months now. Two scans have been completely clear.
Am still waiting on some medical cannabis for neuropathic headaches. Does anyone else have neuropathic pain from nerve damage by the cancer?
I’m on Ribocliclib, I’ve been on it 2 weeks and so far had zero side effects other than a headache and a few sleepless nights and sweats! I can handle all that!! I’m also on letrozole, dunosumab and fluvestrant. This if going to sound silly but I’m worrying I have no side effects and that it’s not working. I’m sure it is and maybe dire effects will kick in and it’s early days still xx
Hi , I think your thoughts are normal - why isnt this hurting me more? It must not be working! I just think we are all very different and bodies react in their own way. I had 74 paclitaxol chemos and apart from extreme tiredness on the day of treatment, I had no other side effects and it worked for 2 years. Sometimes side effects do appear later, but I think with tablets, it is often in the early days as the body get used to this new chemical. Anyway, hope your non side effects continue and scans prove it is working.
I suffered terribly on paclitaxel and I only had one!! You’re right our bodies do react differently but I’m still not getting my hopes up for no side effects as it’s so early. I’m very anxious all the time and that really doesn’t help my mood at all, this is such a hard thing to come to terms with isn’t it. I am a single parent with 2 boys aged 10 and 14 so I do get very lonely and it gives me to much time to think xx
