Hi I had primary breast cancer on left breast 2007 and went through the mastectomy, chemotherapy and radiation treatment completed by June 2008. Thought it was all over n faithfully went for check up etc. 2017 April diagnosed with bone metastasis. Started on ribociclib clinical trials in August 2017. Have been on it since. Yes there is the tiredness and I have had mild diarrhea. My blood count did drop but oncologist said it was expected but he’s always saying it’s fine. About 3 months ago I experienced some pain at right hip but when I mentioned it to him, he dismissed it as nothing. CT scans are done every 3 months showing all clear so far. Just wanted to share and know what others are experiencing.
Also wondering if I should do a PET scan as I’ve heard they are more sensitive than CT scans especially for bone mets.
Hi Annmat,
I work on the Policy and Campaigns team at Breast Cancer Care, and I wanted to see if you wouldn’t mind me asking about your ribociclib clinical trial?
Ribociclib in combination with fulvestrant is currently being considered by the National Institute for Health and Care Excellence (NICE) to be made available on the NHS in England for treating advanced hormone-receptor positive, HER2 negative secondary (metastatic) breast cancer. Its use in combination with fulvestrant will offer those who have previously been treated with one line of hormone therapy for their secondary breast cancer the opportunity to benefit from this drug.
We are gathering evidence to contribute to NICE’s patient carer groups submissions and we want to hear from anyone who is being or has been treated with ribociclib in combination with fulvestrant to help us inform our response on what access to this drug would mean to women with hormone-receptor positive, HER2 negative breast cancer.
If you would be happy to contribute then please email campaigns@breastcancercare.org.uk and I can get back to you.
Thanks,
Olivia
Hi Olivia,
I’m not from UK so I’m not sure if my input counts.
Hi Ann mat I am also on Ribociclib with Letrozole This is first line treatment for me; as I was diagnosed with Breast cancer this year…
Have been on it since June of this year.
I have had only one CT scan but am due another Bone scan.
I seem to be tolerating the treatment well so far.
I still have sone bone pain, back and pelvic area, but only if I am in the same position for a long time.
The Zometa infusions help with the discomfort.
So far I feel well and strangely people gave commented on this.
I am in no rush to return to work as I am gaining new interests and i have hope for a future although it will be different from what had anticipated.
But you know what its ok.
Gina x
Hi Gina,
Nice to hear from you. The regular CT scans as cause I’m given these medication as part of a clinical trial. So it’s a requirement of the trial so they can monitor the progress of the medication. I’m also having Zometa injection every 2 months once.
The side effects are minimal for me too and not many people know I’m stage 4 at my work place as I didn’t tell many of them.
I just do my job like usual but my boss was informed so that I could arrange my hospital check up etc.
I’m glad that you are responding well and you sound like you are doing well. Take care and God bless you. Do what makes you happy.
Hey.
How are all you Ribociclib/Palbociclib ladies.
Keep warm.
Keep hydrated.
Don’t push your selves but do what you makes you happy.
Gina xx