28-11-2017 11:11 PM
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.
23-11-2017 10:32 AM
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.
22-11-2017 04:13 PM
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
22-11-2017 09:44 AM
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?
18-11-2017 08:44 PM
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
16-11-2017 07:09 AM - edited 16-11-2017 07:13 AM
Good news. The National Institute for Health and Care Excellence (NICE) approved palbociclib and ribociclib after negotiating prices for the treatments.
17-10-2017 11:50 PM
17-10-2017 06:24 PM
16-10-2017 11:17 PM
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 ?
14-10-2017 11:40 AM
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
12-10-2017 04:44 AM
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
08-10-2017 11:49 AM
07-10-2017 06:37 AM
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
06-08-2017 04:07 PM
07-06-2017 08:35 PM
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
20-02-2017 10:03 PM