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

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
Posts: 13
Registered: ‎23-10-2017

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
Posts: 353
Registered: ‎26-07-2014

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
Posts: 13
Registered: ‎23-10-2017

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
Posts: 2
Registered: ‎18-11-2017

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
Posts: 353
Registered: ‎26-07-2014

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
Posts: 8,325
Registered: ‎26-10-2015

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
Posts: 1,589
Registered: ‎01-05-2012

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

[ Edited ]

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
Posts: 4,507
Registered: ‎01-05-2012

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

Bumping up for Bab

Member
Posts: 1
Registered: ‎01-07-2017

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
Posts: 15
Registered: ‎01-05-2012

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
Posts: 64
Registered: ‎01-05-2012

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
Posts: 15
Registered: ‎01-05-2012

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
Posts: 1,046
Registered: ‎21-01-2017

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
Posts: 498
Registered: ‎01-05-2012

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
Posts: 1,046
Registered: ‎21-01-2017

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
Posts: 2
Registered: ‎06-08-2017

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

Sorry for typos .. Fat fingers old eyes little phone
Member
Posts: 2
Registered: ‎06-08-2017

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
Posts: 355
Registered: ‎23-06-2012

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
Posts: 5
Registered: ‎20-02-2017

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.