Abemaciclib (Verzenio) NOT approved for use on nhs

[Sunnydrinking]

Very disappointed with this news ....

Jo xx

[Pbsoup]

Why are they not recommending it? Is it an efficacy issue? Although I have read good things about the efficacy of both Verzinio and Kisquali.

I wonder sometimes if the drug companies and insurance companies are in cahoots here in the US. We do get all the so-called newest treatments, but are they actually better? Or is it marketing?

I was just thinking to myself to day that perhaps more women are on Ibrance than Kisquali or Verzinio because Pfizer was first to market and got to the doctors first...

[Wintervt in reply to Pbsoup]

I do believe there is a connection between big pharma, insurance, doctors and marketing.

I’m participating in a clinical trial with a new drug by Eli Lilly and the oncologist who is heading the study had to disclose that he had a interest in the company. I have read that some doctors find clinical trials to be very profitable. In general, companies pay in the $70,000 to $80,000 range for each clinical study.

[Yumibelle]

I understand It does say « provisionally »

[stardust1965]

Jo, me too! It’s sad because it is a drug that is proven to give patients more time but it is a financial decision by NICE.Anyone who was on this drugs trial is encouraged to input their experience. Perhaps NICE will reverse their decision with pressure from patients and would be patients.

I was so grateful that Ibrance was newly available to me when I was diagnosed.

Take care, Vicki

[queeneee]

The Link to NICE about this is here.. you can comment until March 5th.. (you need to open an account ) nice.org.uk/consultations/1...

[queeneee in reply to queeneee]

.. and it costs the NHS just under £3000 a month per person.. this may be the way NICE make them bring the price down...?

[queeneee in reply to queeneee]

also, it says if you are already on it, you can continue..

[Sunnydrinking in reply to queeneee]

Hi

Many thanks for this link. I’ve registered and will be submitting comments in due course...

Jo xx

[Sweeten_1]

I was on ibrance and fulvestrant for 2 years when stopped working then on to xeloda for a year. Now on verzenio with no fulvestrant for a year and keeping things under control.

[Sunnydrinking in reply to Sweeten_1]

Hi I was on palbociclib & letrozole for nearly 2 years. I was then on a clinical trial of an oral SERD for a few months.

I’ve just completed my 4th cycle of Xeloda and I hope I get some longevity out of it.

I’m very fearful of IV chemo so was therefore hoping I could try verzenio as my next treatment line but this may not be an option now,

Like all of us, I just want to live as long as possible but maintain quality of life.

Jo xx

[Teddielottie in reply to Sunnydrinking]

Ladies in the U.K. , some recent good news from NICE about another CDK4/6 inhibitor, Kisqali. NICE has recommended moving Novartis Kisquali ( ribociclib ) from interim funding arrangements to regular NHS reimbursement for certain previously treated breast cancer patients . NICE has approved Kisquali with Fulvestrant for routine use on NHS .This decision comes following data from the phase 3 MONALEESA -3 , a randomised trial in 726 postmenopausal women hormone receptor- positive HER2- negative advanced breast cancer who had previous endocrine therapy . About 60 percent of the participants had visceral metastases and Kisquali plus Fulvestrant demonstrated a statistically significant improvement in overall survival .

[queeneee in reply to Sweeten_1]

Are you in the USA? I was told that Verzenio is not licensed to be used on its own in the UK

[Sweeten_1 in reply to queeneee]

Yes from USA. Go to UPMC in Pittsburgh. I had the testing to see what treatment might work and came back piqray but I had already started verzenio and was working. So oncologist said to save fulvestrant for piqray when I need to switch.

[Hidden]

Money before health. I will never understand this. So sorry Jo x

[kearnan]

I started off on Ibrance (125 mgs.). I was new to breast cancer, let alone MBC and I hated it. Hated it. Plus all the other issues which I wont go into but I would have stopped it myself. My onco then put me on verzenio (twice a day with no break weeks) at 125 mgs. I had severe stomach pain and severe diarrhea and stopped it after a week. Next time I went I told her I stopped it after a week. She lowered me to I think 100 mg. twice a day with no break. The stomach pain would make me cry and again severe diarrhea so again I just stopped it. She said well the least I can give you is 50 mg. twice per day. WHAT A DIFFERENCE. I no longer had to take naps, the diarrhea issue was gone and I felt 100 times better, really normal. Have been on it for about sixteen months now. Plus I get the falsodex injections, percocets for the holes in my spine from the breast cancer and gabapentin plus I take ambien and have been on xanax for years now. It really is just a maintenance dose bc I have been on it for so many years, they say it would be too hard to get me off.

I love the verzenio now. I love not having the fatigue. And quite frankly, although I only told one friend, I stopped about 8 months ago taking two of them. I have only been taking on 50 mg. per day for 8 months. I just got tired of all the pills and my severe dry mouth. And nothing bad happened so I am staying as is.

Sorry, that they will not allow it (I used to think NHS sounded great, but realize now, not so much.) I live in Brooklyn, NY. So Verzenio for me was so much better (after two lowered dosage and then my own lowering of one per day) and so far so good.

I hope they change their mind. It must be frustrating to have others make decisions on what meds you can and cannot take.