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Ribociclib

10 REPLIES 10
Member

Re: Ribociclib

HI

I have just started Ribociclib 200 mg with Fulvestrant and will start on bone strengtheners after I have had a dental extraction done. Just to tell you about mysefl,   I had a pathological fracture in my spine at L2 caused by a bony met and had to have a big operation, spinal decompression and fixation, in early July followed by cyber knife radiotherapy in August.  PET scan showed nothing anywhere else although they want me to have a brain scan which is freaking me out a bit.    My main problem is ongoing pain from the surgery but the pain nurse from the local hospice is advising me on how to get more control of it.  So far on the Ribociclib I have nausea and some vomiting and had to go on Saturday for IV rehydration and a change of antisickness to Cyclizine which seems to have controlled the sickness although I still feel a bit queasy but am eating small amounts okay.    I am walking with a stick and my mobility outdoors is very limited.   I am trying to be positive and think of one positive thing I can do every day but it is hard going.   I was inspired today by the woman who has swum the Channel four times and dedicated it to all breast cancer sufferers.   I don't take any supplements.    I am lucky to have the support of a specialist nurse at the Kingston Hospital satellite of the Royal Marsden.  I know many people don't and it is a postcode lottery.   Gina you are so right! Life is  happening now.   Best wishes to all of us.

Member

Re: Ribociclib

Hi folks. 

I have been on Ribociclib since June 2018.  I have stage 4 Breast Cancer (bony mets). 

So far so good, although I don't take this for granted and treat the taking of my medications as some kind of ritual every morning.

I take no extra supplements or follow any particular diet.

As a previous oncology/Chemotherapy nurse I had always been sceptical of this anyway.

I am currently working as a nurse in practice and development and function pretty well, I even help out in the oncology dept occasionally, with inserting cannulas and taking blood.

Not sure of the future but life is happening tight now, so join in. 

 

I hope this helps.

Gina 

 

Community Champion

Re: Ribociclib

Hi Ramade, I believe that the use of  Palbociclib has been agreed by NICE, but it’s newer and gentler sister drug Ribociclib is a first line only drug, so will not be available if you have had  other treatments. Once it’s proven effective I’m sure it will be signed off for general use, as Palbociclib has been. X

Member

Re: Ribociclib

Hi there,

 

my wife is about to start Ribociclib with letrozole.  She also has Denusomab injections for bone strength.  Just wondering if there's anyone out there taking this combination (or anyone you know taking it) and how you (they) are coping with it?  Any info gratefully received.

 

Thanks

 

Member

Re: Ribociclib

Hi Olivier, does this mean that people like myself who have been treated at stage 4 with most other things might be able to access this treatment. i believe that funding for it's availablity to all has been agreed in Scotland recently. i wait hopefully as i know many many others are.

thanks

Ramade

Member

Re: Ribociclib

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
Highlighted
Member

Re: Ribociclib

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.
Member

Re: Ribociclib

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




Member

Re: Ribociclib

Hi Olivia,
I’m not from UK so I’m not sure if my input counts.
Member

Re: Ribociclib

 

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

Member

Ribociclib

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.