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Trials for Palbociclib (Ibrance) or Ribociclib with UK Locations

57 REPLIES 57
Community Champion

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

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

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

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

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

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

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

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

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

Great news Annrose
Member

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

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

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

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

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

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

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

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

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

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

I think Palbociclib Carolyn

Community Champion

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

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

Community Champion

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

I'm really pleased for all of you that are having palbociclib now. However, what we now need to do is lobby so that those of us who have already had chemo -  and are on this roundabout of drugs which work for a while then fail - can also be given this drug if it's suitable xx it could extend our lives.

 

it does feel as if we are being hung out to dry...it isn't fair...it is discriminatory.

 

Moijan💚💚💚

SML
Member

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

Thank you so much for your reply. This is my first time of using the forum ... and even just hearing another voice really helps me. I will try hard to believe in the treatment working - and in the other options available if it doesn't .... and hope that the scans will get done soon and give me more information. Thanks again and wishing you well.

Member

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

Hallo SML and welcome to the club! It is easy to say but try not to worry until you know what you are dealing with. Your Onc has ordered scans which is exactly the right step, if Palbociclib isn't working for you there are still many other options. Palbociclib is new in UK, as I posted on another thread, but is well used in U.S. and I have read that it sometimes can take several months to show an effect. Be guided by your Onc but make sure he has experience with this new drug as well.

Im on a drug trial with it and after my first 3 weeks I got a throat infection and lost my voice. It's never happened again and I've been on it for 21 cycles. So it could be your body getting used to it but scans will show what is happening and whether you should continue. It doesn't work for everyone but you have many options. Good luck and keep us posted x

SML
Member

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

Hello everyone. This is my first time of posting. I was diagnosed with Stage 4, secondary in the bones and various lymph glands, in September, having found a lump in my neck. I am on Palbociblib, Letrozole and Denosumab. I have just completed my first three weeks of Palbociclib and everything seems to be getting worse... I have gone from being asymptomatic to having some pain in my breast and chestplate area, a cough and breathlessness. My oncologist has ordered another round of scans - to see if the changes are due to the treatment or to the disease progressing. I am very frightened. I wondered if anyone else has had any similar experiences?

Member

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

I have breast cancer and secondary cancer in bones. Also in lymph nodes. In October I was diagnosed with bladder cancer but I had surgery and I am clear of it. For my other cancer I was told that it was not curable but treatable and I am taking Letrozole and Palbociclib 125mg and I am getting on ok with them. I have had a swollen arm for 2 weeks and it hurts, had a scan in case I had a blood clot, thankfully it was not. My oncologist said yesterday that it was lymphodema and is sending me to specialist to get arm moving again. He said it might be the tablets but seems to think it was lymphodema. I am on my 2nd lot of Palbociclib and oncologist said yesterday(when he measured lump in breast) that its not as bad as they first thought. I have to have a scan on chest and pelvis in December, with contrast. Im not frightened of scan but I am scared with the results

Member

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

Fantastic news! NICE have managed to negotiate a good price too by all accounts, well done to them!

Community Champion

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

Thanks bon
That's really good news. ..I think many ladies here will be given the option of it ...
Hugs xc
Member

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

Good news. The National Institute for Health and Care Excellence (NICE) approved palbociclib and ribociclib after negotiating prices for the treatments.

http://www.bbc.co.uk/news/health-42006609

Community Champion

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

Bumping up for Bab

Member

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

Hi. Papillon and Dutchy. This is my first time posting. I'm in Yorkshire. I was diagnosed with secondary liver mets in May this year. I'm currently on ibrance and letrozole. I've just started 5th cycle of ibrance. First 2 cycles were at 125mgs. Struggled on that dose and bloods not good so then went to 100mgs. Initially felt quite panicky when it was reduced to 100mgs and was fretful that it would not be an effective dose. Take a look on the american inspire forum. It's really helped me understand more about this treatment and side effects. I can totally relate to you guys feeling a bit isolated. I'm the same no one else on this treatment where I am.
Since reducing to 100mgs Side effects are bearable but I don't think any of us would choose them would we!? Initially my hair seemed to thin but after 3rd cycle it hasn't got any worse thankfully. I've found that drinking loads of water helps. If I don't I get really bad headaches and nausea. Cyclizine has helped me manage nausea as well. Is any one getting problems with foot pain? That's started in recent weeks. My eyesight seems ok - sorry to hear Papillon that this is troubling you and for you Dutchy with pain of bone mets.
Thanks to both of you for posting it's helped me not feel quite so isolated on this treatment.
Janie xx
Member

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

Hi Dutchy, I'm in Co Durham, I go to see about my eyes week tomorrow, I am getting in such a state, It took about 7 months , before they would look into the fact that my double vision with or without glasses was linked to my breast cancer, sorry have to go, fingers croassed I can get some answers with my eyes, Papillon. xx
Member

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

Hi I am on Ibrance and anastrazole. I also feel a bit alone. Because it is such a new drug.THere is not much feedback from the hospital staff.

 

My oncologist said anastrozole or letrazole shouldnt make much difference. 

I am just starting my third cycle but am already on a lower dose of 100mg. My neutros are very low. 

Also my bone mets hurt. possibly even more. Have others experienced that to.

I do not have more problems with my eyesight. , then I had before.

I do experience some hotflushes that I didnt have before at all.

Fatique en , again, a low neutro count. #

My hair is starting to thin a lot more too. 

BUt my thinking is very much affected. chemobrain??

I am hoping for some positive effect. I was miss diagnosed in November 2016, diagnosed with bone mets in Januari 2017. Then It took till July to go on the Ibrance. All the trials had closed in the meantime ? I was told. 

I live in the Midlands Wolverhampton.

 

HOw are you feeling otherwise? Hope your eyesight is better ?

 

Member

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

Hi , just a quick message, I have seen on here somewere last night that there are 15 on the trial drug irance, in the north east . My eyes won't let me stay on here long before they are staying enough. How can I find out more info of others in my area. I am on cycle 3 irance /letresol, & feel very alone, as I can't drive since Jan , & until I get the eyes sorted I can't stop on here for long.I will check back later, please exsuse any spelling trying to rush it. Love & Hugs to you all Papillon

 

 

 

 

Community Champion

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

Hi Lindyloo, one of the criteria for the trial was that you were on Letrozole and had not started anything else. There are 15 of us in the north on it, and it is to collect results of efficacy. It has good results in the U.S. X 

Member

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

Morning Annie
Pleased u managed to get on trial. I live in the Washington Tyne & Wear. We may even have the same oncologist.

I mentioned the last time I saw oncologist if I could be given that treatment when the E/E combo I was on had failed after about 4 years.

I have been on Letrozole from 2010 till 2014 maybe that is why I could not be given that treatment. I have now started on Cap.

Hope your treatment goes well.

Linda
Community Champion

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

I've been accepted onto an Eames (?)trial of Palbociclib following Pfizer open access. Paperwork had to be submitted by end of September, and my Onco was very on the ball getting it done. There are 15 in the NE on the trial which is large for this type. No placebos, I understand , just mapping the efficacy of the treatment. I have lung mets, small but measurable , and was diagnosed after a second CT scan before my radiotherapy finished. I was placed on Letrozole before I started my rads. The Palbociclib works very well with Letrozole, apparently, and extends the shelf life of the Letrozole - so hopefully more than five years if I can tolerate it all.I fit all the criteria - chemo, rads, Letrozole .  The results in the states have been very good, so here's hoping! X

Member

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

Sorry for typos .. Fat fingers old eyes little phone
Member

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

Hi from across the big drink. I pray pfizer comes down on costs and others can get this stuff. I did notice a drop in price here in the US the past month. I've been on Ibrance Letrazol and xometa ..about to start round 7. Was diagnosed stage 2 june 2016 December "remission" January they dis a scan on shoulder thought nerve damage feom mastectomy.. Nope it hit my bones. Stage 4 . Had my scans past week. One is showing healing the other 2 no change or growth . no new tumors. I will say as I havent seen any about. One additional thing. Melatonin. There are some studies with the letrazol.. It helps block the cancer. Haven't slept well in months added it after checking with dr. Take vitamins. My blood work has been surprisingly good. Low b12 and folic acid thats about it thou.
It does mess with the appetite.. Does anyone else get cravings ? They are worse than the pregnancy type cravings! !! Fatigue and hot flashes are about the only problems I have.
This cocktail of meds really seems to be a miracle for us. Thank God and those who figured it out ! I just hope greed doesnt stop folks from getting it.
Much love from the US. We are strong we are Amazon! ... Blessed be all.
(Amazons would cut the breast off upon reaching warrior status.. Anyone fighting this is a warrior)
Member

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

Hello, I've just been told today I'm going to be on ribociclib and letrozole after I have my oopherectomy. It's not a trial as such as there are no placebos, and the trials have already been conducted. I'm having it as my first line for secondary bc bone mets xx

Member

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

I am due to start the Pipa trial this Weds.. Palbociclib, Lettrozole and Taselicib.. just wondering if anyone else is on it and what to expect.
Member

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

Hi Carabel,
Noticed you mentioned you are in Glasgow. I attend a hospital in central Scotland but the oncologists come through from the Beatson to treat us and we get radiotherapy there too. So effectively we get the same treatment as you do in Glasgow.
Anyway, hope everything is going OK with you. I'm not Triple Negative but I do notice there are a few trials for your type of cancer at moment including METRIC. I wish you all the best with that. I haven't been able to find any trials for me at moment but hope some will come through.
Please feel free to PM me if you ever want a chat.
waffles xxx

Community Champion

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

http://clincancerres.aacrjournals.org/content/21/16/3591.short

My understanding carabel is that it IS for oestrogen pos, as usually they include an aromatise inhibitor, but maybe someone else has mor info
moijanxx
Community Champion

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

The other thing Saltee is, one can often register on a trial at another hospital, attend there initially and be accepted, but not necessarily have to trek there every month. It doesn't necessarily mean you have to change hospitals, although there would usually be a need to attend some appointments, depending upon the trial.
Member

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

Hi there can I just check - is palbociclib for ER positive breast cancer only? I am triple negative and am currently considering going on the METRIC trial. I have had recent progression on Taxol (first chemo tried). Waffles I am also in Glasgow. .
Community Champion

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

Well, I'm lucky to be at a hospital where trials are regularly reviwed. My onc is pretty on the ball. However I also dip into the link you gave us for all sorts of things on a regular basis as I used to work in public health...... but I do think it's a good thing to raise the issue with/remind everyone and to draw attention to the link... so thank you. moijanxx
Community Champion

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

Now this is an excellent idea. Well done

moijanx
Member

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

Thanks Saltee,
That would be great. You are doing everyone a great service by doing all this research. Waffles xxx
Member

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

Hi Waffles,

Sorry there isn't anything there that suits you yet. I'm in Edinburgh (not too far from you I imagine). I'll let you know if I hear of anything in this part of the country.

saltee x

Community Champion

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

Thank you Saltee
For doing all the "leg work" ..I'm going to make a cuppa and look at all these in detail.
Xxxx
Member

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

Hello there StillHere! Happy to help Smiley Happy

 

Yes, I can imagine it must be hard for even the oncs to keep up with everything going on so it definitely helps to prompt. I would expect most oncs are more than happy to advise on eligibility and provide help enlisting where appropriate once presented with details of a trial.

 

saltee x