I’ve been prescribed Ribociclib after Stage 2 breast cancer and ‘may’ be starting it next week but… although I had my diagnosis and lumpectomy under the NHS, I was advised by two cancer surgeons to ‘have the radiotherapy privately if you can…’ not because the treatment is any different, but you can for the most part, pick a time which suits you, which you can’t on the nHS.
So I had 15 days of radiotherapy, which was easy ( for me) and thankfully did not need chemo. I’m 62.
But, I was prescribed Ribociclib two weeks ago… a week before it had been approved for the NHS and NICE. It is a HUGELY expensive targeted treatment (don’t feel I’m worth it…) but my husband says that’s “why he pays for private insurance…”
Has anyone had any experience of taking this new treatment? Does anyone know how it will pan out on the NHS , or will it essentially remain in the private insurance market for the foreseeable until the NHS/Government can negotiate a lower price tag…? M x
For your question about Ribociclib on the NHS, our specialist nurses may be able to give you more insight into that. You can get in touch with them here on the forum on the Ask our Nurses your questions board or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
There is a chat about Ribo that has been ongoing since lt December and a lot of good info/how people are getting on. Can answer your questions and discussion on NHS. The link is
Ribo has just been approved by Nice for NHS in England for early breast cancer (with same requirements as privately). Being reviewed by Wales, Scotland and NI
I have started the ribociclib today. I had hormone positive cancer spread to lymph nodes. I had surgery and 5 weeks of radiotherapy. I am on anastrazole as well
Gosh!! You had FIVE WEEKS of radiotherapy??!! What stage were you at when you were diagnosed? How do you feel now… ?
So are you in Cycle One of Ribociclib, if ao, how are you feeling? Mouth ulcers? Glandular neck pain? Constipation? Nausea? Muscle and joint pains? Teeth hurting? Fatigue? Insomnia?
I have just in the last two weeks come OFF anastrozole and have gone on to Exmestane (sp ) in the hope that my neck, muscle and joint pains might recede, as my oncologist believes it will be the anastrozole causing those side effects, not the Ribociclib.
Let me know how you are feeling and whether you are coping?
Thank you so much for taking the time to reply to my introduction all those months ago. I’m so sorry I never replied at the time. Shortly after joining, the fatigue, brain fog and my existing lower back pain became overwhelming, and I completely lost track of the forum.
I’ve only just come back properly and was really touched to see your kind message waiting for me.
I’m still taking Ribociclib alongside Anastrozole. Thankfully, I haven’t had any problems with my blood tests, but the fatigue has become quite severe. I also have a persistently high heart rate, my chronic dry cough seems worse, and I’ve had very watery eyes for the last few months. My breast cancer nurse has said that if the side effects become too difficult, I could reduce my Ribociclib dose from 400 mg to 200 mg, so I’m trying to find out about other people’s experiences before I make any decisions.
I hope you’re doing much better now and that changing to Exemestane has helped with your neck, muscle and joint pain.
I’ve actually just posted a new thread with more details about my diagnosis and treatment, as I’d really like to hear from other people who have had similar experiences with Ribociclib. Hopefully you’ll come across it.
Thank you again for your kindness, and sorry again for such a very late reply!
I’ve been on Ribociclib since December, alongside Anastrozole. So far my blood tests have been fine, but I’ve found the fatigue quite difficult, along with a few other side effects. I’ve just posted a new thread with more details about my experience, as I’m hoping to hear from others who have been on Ribociclib and may have had their dose reduced.
I hope you got on well with starting Ribociclib. How have you been finding it, and how are you getting on with the Letrozole?
I totally understand how you have been affected by the Ribo and hormone blockers, but also having the lower back pain is simply awful for you.
I am all sympathy for that, having had L3, L4 and L5 vertebrae replaced with my hip bones. The pain was terrible for years.
It has now as often happens, transferred to my upper back, not helped by the 15 rounds of radiotherapy.
It never rains eh?!
But wonderful that you are back up and running and I am going to look for your latest thread. I know it seems obvious, but it is helpful to hear that others are experiencing the same side effects, it doesn’t feel so lonely.
Wishing you easing of your pain and lessening side effects.
Hi Newby, I am ok on the Ribociclub, I do have some fatigue but managable.. I have been struggling with Joint pain in my hands and knees but the Onco thinks its the Letrazole not the Ribo so has decided not to reduce the dose for now as overall my bloods have been ok. I have just swtiched from Accord to Femera and I am hoping this helps the joint paint as my hands and wrists and Knees in the morning are so painful. How are u feeling? x
Ooh, that’s funny that you have mentioned knee pain specifically, as I have been having that recently, a year into my Ribociclib and Exemestane journey..! I am so fed up with the pain.
Does anyone get pain in their intercostals? Mine really hurt when I breathe in, or yawn whatever.
Very upset to read of the actress from The Office having terminal breast cancer how utterly devastating to be so young and so close to the End. M x
It’s amazing how all our bodies handle these meds in different ways… some with severe side effects, others not so bad, some have had hair fall out, others like me now have very coarse hair… but the main point is that, these meds will keep us clear of further cancers,
Are there any men on this forum who are going through breast cancer? It would be interesting to hear how these meds affect men.
Foxgem I hope your cancer path stays clear and you settle into the rhythm of the meds. m x
did not need chemo. I’m 62.
) in the hope that my neck, muscle and joint pains might recede, as my oncologist believes it will be the anastrozole causing those side effects, not the Ribociclib.
! Melanie xxx
