Hi,
I’m in a bit of a quandary and don’t know where else to turn! Since diagnosis of secondary bone mets in November I have been on ribociclib and letrozole.
I had my first staging CT scan about a month ago and got the results about 2 weeks ago. Although my tumour markers are way down and some of the bone mets haven’t changed, a couple of the bone mets have progressed. My oncologist took it to MDT and they decided to move me from ribo to chemo. I was ok with this but then a day or so later realised I’d forgot to mention that in the 4 months I’ve been taking ribo, I’ve had in total 5 weeks off of treatment for various reasons so haven’t had a full straight run of 3 months medication.
The oncologist responded by asking me what treatment I’d like to go ahead with… as if I knew?
My amazing breast nurse finally pinned him down and got him to re-review my case and he has now gone back to recommending chemo but… the doubt has set in. Why did the doctor not review the evidence properly to begin with? Have we actually given ribo long enough to be effective? Can I trust his decision now that he’s changed his mind back and forth?
I don’t know where to go with this. I don’t have time to go and get a second opinion as chemo is scheduled for less than 2 weeks time and he’s the most experienced oncologist in the hospital. And there are no medical studies that provide evidence on this.
Could I contact Novartis (the drug company) and ask them or is it unrealistic?
Am I in denial that this “miracle treatment” hasn’t worked for me?
Any ideas or suggestions gratefully received! Thanks x
Sorry to hear that you’re not getting the definitive answers you need regarding ongoing treatment. Just thought I’d share my experience with you. I’ve been on palbo/ letrozole combo for eighteen months now. First year was great and scans showed great improvement of spine mets. However, over the pasts six months my bloods have been very erratic. I’ve had to have extra weeks off the treatment because of low neutrophils and most recently because of low haemoglobin levels, resulting in a blood transfusion. Last week’s scan results showed progression but my oncologist is putting it down to all the breaks in treatment. He’s decided to switch me to abemaciclib, a different CKD inhibitor, which is kinder on the blood apparently. Don’t know if that was a discussion you have had with your oncologist? I really hope you get a treatment plan sorted soon.
I think that’s a tricky one for us to answer on here as it’s quite medical. I think you need to be really sure about your next step though and you still have a bit time. Can you contact your oncologist’s secretary and ask for another appointment, even if it is a phone call? Or ask your nurses to set this up? It sounds to me like you need to ask if continuing on the ribo or another ciclib drug is an option or why they feel the chemo is best for you. Until you’ve heard all this then I’m not sure your mind will be at rest.
I hope you get the answers you need and soon. Sending love.x
I would say go to chemo I had much same with but after 2 years or great results with ribo and letrazole , u can always come back to it my consultant says so it’s not never just not right for u right now xx
Thé letrazole and ribociclib didnt work for me, so I am now on oral chemo twice daily, xeloda waiting for a scan in a month but definitely can’t feel the lymph node big lumps that I could… and it’s much more gentle than the IV chemo I had before…
Hello, please don’t be afraid. There are many of us on those drugs for a year or so. Best to take it easy when you first start. I made sure I wasn’t very busy and hadn’t committed to much as I wasn’t sure how I would feel. The more tired I am the more I feel nauseated. That tactic really helped me. I started on letrozole and palbociclib (which is similar) in December 2020. Good to do a little exercise as well as that helps you to feel a bit better. The biggest problem I had was the mental side of it all.
I hope this helps a little. Is there one thing you’re most worried about? You can always call the lovely Breast Cancer Now nurses to talk it through as well.