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Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hi Tiny tears, I am on a trial with 19 others, with Letrozole and Palbociclib and started October last year. NICE signed off on it early this year, so it is still very new , only a year, and I think the best answer you will get. I have success with the combination as my mets have all shrunk, X

Member
Posts: 1
Registered: ‎23-10-2018

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hi This is my first post Smiley HappyI have dx with secondary with small nodes in both my lungs following a PET Scan. I'm on the third cycle of Ibrance, and feel really good. Only bad at night when I stay still for too long, I get severe joint pains. Love to hear of ladies been on the cycle of letrozole and Ibrance for a number of years, and what their experience has been?

Member
Posts: 8
Registered: ‎07-06-2018

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hello everyone,

 

I work on the Policy and Campaigns team at Breast Cancer Care, and I wanted to ask if anyone has been treated with ribociclib in combination with fulvestrant?

 

This combination 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.

 

Ribociclib in combination with an aromatase inhibitor is currently available as a first-line treatment on the NHS in England for hormone-receptor positive, HER2 negative locally advanced or secondary breast cancer. However, its use in combination with fulvestrant will also 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.

 

Your answers will be collated and presented to NICE and any quotes or information you supply will be anonymised in our evidence. The questions we’d like you to feedback on are:

 

  • Are there any advantages of ribociclib and how have these affected you?
  • Are there any disadvantages of ribociclib and how have these affected you?
  • Is there anything else you would like us to tell NICE about ribociclib or the current availability of treatments for metastatic breast cancer?

We are looking for responses by Wednesday 19 September.

 

If you have any questions about our work in this area, please email campaigns@breastcancercare.org.uk.

 

Thanks,

Olivia

 

Member
Posts: 4
Registered: ‎26-07-2018

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hi I have been on 125mgs palbociclib take it at night only side effect was abdo pain and nausea now take lanzoprazole 15mgs which helps . Read on American and Canadian websites about using astragalus for white cells which I started after second month as white cells were very low have been good since then got it at Holland and Barret . I take letrezole at lunchtime. Had scan results today tumours in chest breast and pelvis all smaller after 3 months. Hope you are doing ok

 

Member
Posts: 526
Registered: ‎15-04-2017

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Morning riversidedawn, it’s great that this new combo seems to be working for you. 🥂👍😀

I’m also on zoladex injections. I started letrozole last Friday and I start Ibrance this Monday, so I’m very keen to hear from anyone who is having success.

Especially anyone with liver mets please.
Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Thanks stillhere, I think it's nice to post a good news story to give a positive boost to those embarking or treatment or feeling overwhelmed with side effects. Hopefully a little positivity from me helps some to keep on track.
Member
Posts: 353
Registered: ‎26-07-2014

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

I'm so pleased for you, River, that is a great result! It's lovely to relax again for a few months isn't it? I never know whether to keep reporting my trial results as so many of us haven't had the chance to try Palbociclib, but I have been taking it in my trial for nearly 2 1/2 years. I have had side effects as I'm still on a high dose but it's worked for me, I'm so grateful to my team at the drug development unit.

Im sure you will have continued success now it is working for you x

Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Little good news story. I was diagnosed with bone mets Christmas 2017 and have been on Palbociclib / Letrazole plus Zometa and Zoladex since January.

 

Had my first 3 month MRI scan end of March which showed reduction in all three tumours (vertebra, sacrum and pubic bone) and the larger vetebra one has started to re-build itself. 

 

Well, just had the results from my 6 month MRI which shows stable although there is some activity, but no growth and no new tumours. 

 

It is really reassuring to have these regular scans as it makes the stress of living with the diagnosis and hardship of the side effects so worthwhile. x

Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Great news Annrose
Member
Posts: 8
Registered: ‎09-01-2018

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

CT scan last month showed stable mets yaaaaaaa still sickly and dizzy (stable mets)
So good to read
Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hi Annrose, my Onco doesn't mind when I take the two drugs, but my experience with nausea and dizziness taking both together has caused me to split them. I take Letrozole in the evening, then sweats occur overnight and they're out of the way. Teva brand has fewer SE for me. The Palbo I take in the morning with my breakfast. I haven't tolerated it very well, so am now on the lowest dose with a two week rest period. It will be interesting to get the results of my CT scan tomorrow. Hope this helps. X

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hello annrose
I'm not on the same treatment as you but take exmestance and everomus. .I found taking both together made me very sicky, dizzy and headache. I split them now. Exmestance mornings and everminus evenings which as really helped. Not sure if it's recommended but if it helps. .try it.
Xxx
Member
Posts: 306
Registered: ‎30-09-2017

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

[ Edited ]

https://www.telegraph.co.uk/science/2018/01/11/breakthrough-breast-cancer-drug-thwarted-chemical-fou...

 

I first posted this a couple of months or so ago but there seems to be 3 threads on Palbociclib. It’s been mentioned on the Inspire forum too. I’m fully aware research about diet isn’t always welcome here but this seems reputable enough and may be of interest to some who haven’t seen it. 

 

Just to add there was more information on the Body Soul Nutrition fb page/website along with comment from Cancer Research here in Oxford.

Member
Posts: 8
Registered: ‎09-01-2018

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Good morning ... Riversidedawn

i was diagnosed with breast mets stage 4 September 17. Letrozole taken from September PALBOCICLIB taken from December 17. I have had to come off twice due to low white blood count. Now on lower dose 100mg still have a lot of side effects. Last ct scan showed no improvement. 

I will persevere until next ct scan then take advice. Mets in my spine pelvic area legs shoulders and upper arms. Maybe quality of life would be better without PALBOCICLIB who knows? 

Can anyone tell me is it better to take both latrozole and PALBOCICLIB at the same time or an hour later 4 hours later, I have asked my oncologist to no avail.

Member
Posts: 230
Registered: ‎01-05-2012

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hi. The NICE guidelines say it is first line for secondary breast cancer. Any chemo you have had as part of a primary diagnosis does not count.
I do not think your onc is alone in bending the rules for you. I have recently started Ibrance and letrozole after other treatments. First marker indications are that it is working....
Community Champion
Posts: 1,242
Registered: ‎24-11-2014

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Hi ladies, quick update from me, I have posted on bone mets thread but thought I'd add it here too.

I was dx with bone mets in November, started zoladex and exemestane in December and first zometa booked for Wednesday (tomorrow).

I saw my oncologist yesterday and he is keen to get me on letrazole/palbociclib (ibrance) combo asap and is confident that I can pick up the drugs on Wednesday when I go for my zometa infusion.

It is interesting that my onc said it was approved in November for first line defence against secondaries but did not say that you only qualify if you haven't previously had chemo. I had 6 months of chemo in 2014/15 and he is going to "cheat the system" and say that I didn't take the zoladex/exem as that would preclude me even though it was just one month.

Also everything else I've read about ibrance says it's for post menopausal women, but he's giving it to me with zoladex because I'm pre-menopausal.

May be I'm lucky and have a good oncologist? He is a leading clinical oncologist in our area and heavily involved with trials. He also wants to get me on the cyberknife trial.

I'd be interested to hear how you are getting on fellow ibrance buddies (Susan, Dutch, Jamie, Anniej ... anyone I've missed!) - some of the SEs look as bad as chemo and I want to keep working, dog walking, fitness/yoga and ferrying my kids about!

Xx
Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Have written to Nice, telling them how we feel. Maybe we should all write to nice.

 

Moijanxx

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

I think Palbociclib Carolyn

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

Today when I saw oncologist he said that he's happy for me to continue with letrozole as it's doing well but if I get any progress will have to add something else ..I asked what and he said we have new things coming along now so can hold back on chemo more these days ...

So I don't know quite what he was hinting at .
Hugs xx
Member
Posts: 353
Registered: ‎26-07-2014

Re: Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

I'm right with you, Moijan, much as I am delighted that Palbociclib has been approved for first line metastatic treatment I am surprised that NICE hasn't considered it for pre-treated patients who need another lifeline. It does come with side effects so a pure hormonal would seem a better first step with a secondary diagnosis as it is more easily tolerated.

Still, who am I to know? x