Hello,
I’ve been taking Ribociclib and letrozole for secondary breast cancer since June and thankfully my first scan showed some shrinkage. I’ve been told by my oncologist that most people plateau on this treatment at some point although they were vague regarding when this typically happens. I realise this is because everyone will be different and it’s impossible to make any predictions but I’ve been wondering if there’s any information on the optimum time for shrinkage before things usually plateau? I guess I keep wondering how realistic it is to hope for further shrinkage in coming months. Many thanks for any help you can give.
I’ve been told (twice) my my oncologist that the average time on Ribociclib before progression is two years but don’t know if that was just for bone mets which I have . This means therefore that some people will have several years on it without progression though some of course less .
I think go with the flow and live assuming it’s keeping things stable until proved otherwise - I hope for you it’s a good long time. By all accounts it’s a good treatment . All the best
Hello there, thanks for your reply. That’s helpful to know as I couldn’t stop wondering. It’s been going okay so far and likewise I hope it continues to work for you for a long time too. X
Hello ,
I am also on Ribo and letrozole, have been for around a year and a half and there has been improvement ( some shrinkage), the most was after the third round, i go every three months. Secondary in left lung and 5 in spine. The last appointment it stayed the same as before, no better, no worse and I guess that is a positive. But, we are all different and I am told a lot not to compare myself to other people. I have had my scans a week or two ago and got another appointment with oncology team end of the month get results from that. I have also heard that there is a plateau. My friends Mum was on this treatment also and she hit the plateau at around 2 years and is now on chemo tabs which is doing wonders for her, I am sooo glad about that as it is a worry when meds stop being effective and you wonder if thats the end of the road.
i agree withj Gillmary, go with the flow and focus on now …easier said than done I know!!!
Wishing you all the very best
Jacqui
Hi Jacqui,
Thanks for your reply. I’m very glad you’re still stable on it, long may that continue. It’s still fairly early days for me (diagnosed in May) and as much as I try not to think too much about the future it can be easier said than done. It’s so hard coming to terms with the fact my life isn’t going to be as I’d have hoped even a few months ago but going with the flow and the here and now is good advice! It’s also reassuring there are still options when the ribo stops working. It’s horrendous we are in this situation but atleast we have treatment options which once would not have been available. All the very best x
Do you mind if I ask where your mets are? Horrendous is spot on. Before this I have only been ill once in 2020 with flu, was healthy as a horse! Never even had any childhood diseases. It really is a shock to the system.
Healthy as a horse before this horror show sums it up nicely! Mine are in my lungs and I was diagnosed de nuvo in May. Throughout the initial horror of my diagnosis people kept asking me when my primary cancer was and I didn’t have the foggiest what they were on about! I was a very healthy 53 year old at the start of the year (so I thought) and developed a chronic cough in February which I thought I should get checked out. Friends still tell me how shocked they were as I had a healthy diet, do yoga etc and was never sick x
Crikey…same here. All friends and family shocked. I have always been a non smoker and virtually teetotal. Fit enough to climb mountains, climbed Snowdon only 8 months prior diagnosis.
I had a change in my skin and texture on breast but the doctor at the time only glanced at me and said “not cancer”. Here i am a year and a half later stage 4. Sometimes it feels like I am in someone else’s bad dream.
How are you coping with side effects?
I get shockingly bad hot flushes, insomnia and pain in hands and feet.
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That is so frustrating to have been told ‘not cancer’. I’ve found the medication has helped a lot with my breathlessness although I also get hot flushes, just at the point in life I thought I was over the menopause! The worst side effects for me though are very stiff joints, especially my hands and knees. I used to be very flexible but no longer! X
Hi mumofarchiedog
Thanks for your post.
You’ve started treatment with ribociclib and letrozole for secondary breast cancer in the past few months and it’s understandable that you have some concerns around the idea of a treatment plateau.
Treatment for secondary breast cancer is aimed at controlling and slowing down the cancer, relieving symptoms and giving you the best quality of life for as long as possible.
Shrinkage may be seen on a scan, but the treatment would continue as long as the disease remains stable even if there is no further reduction in the size of the tumours. Stable disease is a term used to describe a tumour that is not growing or shrinking, and no new tumours are developing. This would still be seen as a response to treatment. The length of the time the secondary cancer remains stable varies from person to person, but you will be having regular scans to monitor this and help your treatment team decide if a change of treatment is needed.
As @gillmay and @jackbaz have said it’s about trying to live life as much as possible although that can be difficult at times with a diagnosis of secondary breast cancer, particularly as it sounds as though your diagnosis came as a shock to you.
We provide a number of different services for people living with secondary breast cancer aimed at providing both information and support online and face-to-face. These include Our Living with Secondary Breast Cancer Online groups facilitated by trained counsellors and speakers live sessions. Our face to face Living with Secondary Breast Cancer groups meet up monthly and also give you the chance to connect with and share experiences with other people who understand what you’re going through.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000. If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
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Best wishes
Julie
Breast Care Nurse
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