Member
Posts: 6
Registered: ‎07-09-2018

Re: Palbociclib

Im 43 and on the same. Hot sweats make me feel like my heads gonna explode lol.
Im positive and i keep tabs on coppafeel founder kris. She is 10 years in with secondary. So there is hope, n medicines keep getting better. Lets stay strong togther. Much love
Member
Posts: 6
Registered: ‎07-09-2018

Re: Palbociclib

Im on imbrance, zoladex n letrozole, hot sweats coming thick n fast feel very tired, n itchy, but so sickness. Secondary breast after 10 years. Such a shock. On the tumeric lemons vit c to keep me bug free, that n garlic n good foods. My white cells are a bit low at 1.98 but higher than the first round, just finishing my second round tomo. Fingers crossed they stay level. PMA all the way ladies. Much love
Member
Posts: 353
Registered: ‎26-07-2014

Re: Palbociclib

Hi Sally, I'm not a big help because I've never been on a different cycle to the 3 on/ 1 off. Luckily, after 33 cycles I haven't had to miss any weeks apart from a bad flu last January.

What I was going to say is that I have read anecdotal evidence on a U.S. Forum that reducing the dose further to 75mg has still given good results. They have been using Palbociclib for much longer than us so it might be worth a discussion with your Onc? 

Member
Posts: 3
Registered: ‎22-11-2017

Re: Palbociclib

Hi. 

I am interested to know if anyone on here is doing a different palbocyclib schedule to the 21 days on 7 days off. I know there is currently a trial in the US seeing if a continual 5 days on 2 days off works better to reduce neutropenia, which will report on its interim findings next year.  I started on Palbo 13 months ago and had the dosage reduced to 100 after about 5 goes, because my neutrophyls were consistently low.  This last cycle I have been feeling grotty nearly all the way through rather than just at the end. I had a FBC blood test (for the dentist) on day15 and they were already only at 1.13.  I will ask my oncologist what she thinks about changing the schedule, but tbh I dont have much faith in her,  so am thinking of trying the 5/2 one for a month anyway to see if it improves things.

 

Thanks

Sally

Member
Posts: 7
Registered: ‎07-06-2012

Re: Palbociclib

Hi feelthefear, I hope you had a cool time in Spain. I decided not to have the flu jab, touchwood still doing ok. When I was at my secondary group pain management palliative nurse said if I've never had flu or bad colds & more important my wife has it not too. So I'll make sure I keep away from hidden dangers as best I can. I think if it was already in my system before my cancer came back I would have had it x
Member
Posts: 526
Registered: ‎15-04-2017

Re: Palbociclib

Hi mags.
I had mine two weeks ago, then three days later flew to Spain. No problems at all. My oncologist advised me to have it on my week off the meds.
Hope you’re doing well.
Member
Posts: 7
Registered: ‎07-06-2012

Re: Palbociclib

Still here ,thanks for that. I've never had a flu jab in my life, so yes I'm worried I could have a reaction. You have been helpful, I went through where I go & how I make sure I have my sanitizer, friends avoid me or tell me to stay away if they aren't well,which is sensible. My wife has had her flu jab, which my oncologist said was more important, because if I was going to catch it from anyone it would be her. My gut feeling is saying not to have it. You said you're on your 33 palbociclib, that's brilliant & encouraging . Thanks for your help it's much appreciated x
Member
Posts: 353
Registered: ‎26-07-2014

Re: Palbociclib

Hi MagsHicks, are you worried that the vaccination or that possible flu might set you back? The flu jab last year wasn't very effective, I had it in November and got flu really badly after Christmas so I'm keen to avoid that this year!

The vaccination itself is safe, it's not a live vaccine but I hope it works this year....I joke that NHS got the economy version that only targeted 1 strain!!

Im on cycle 33 of my Palbo trial, will be having the jab but I'll also avoid crowds, late nights, getting tired and anything else that might hit a weakened immune system. I'm not sure if I've been helpful but I hope so.

Member
Posts: 7
Registered: ‎07-06-2012

Re: Palbociclib

Hi again sorry to keep picking your brain. But I have just finished my 8th cycle of treatment, touchwood still doing ok. I'm in a bit of a quandary, I've been offered a flu jab, I'm not sure whether to have it. My oncologist said my choice, it might give some protection, but might give none. I have a fear of undoing the good work so far. Help, thoughts please x
Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: Palbociclib

Hi Mary Anne, the chief Onco in my hospital exhorts us secondary girls to get our flu jabs ASAP every year. Too easy to end up really really poorly, he says. However, just check it is a dead vaccine being used ( which it is in uk) What country are you from? X

Member
Posts: 5
Registered: ‎01-10-2018

Re: Palbociclib

Hello ladies, I am new to this group. I was diagnosed with stage 4 breast cancer nearly 3 years ago. My original treatment consisted of radiation treatment followed by letrozole and Denosumab for my bones. After 2 years the letrozole stopped working and I developed anothe 2 tumours ( already have 2 in my spine) . Because I am a private patient I have been put on a combination of Palbociclib and Flasodex. For those on this treatment you know that means your white and red blood count I will be lowered. 

Niw this is the point of this email and I would be interested to hear from those UK residence on this point. I am 64 my white blood count has been too low on one occasion that my treatment has been delayed once but my GP said I don qualify for a flu jab. Has anyone else experience this . 

‘Good luck ladies , it isn’t easy but there is life in this old dog yet 

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

Re: Palbociclib

I was put on zoladex, palbociclib and Ibrance all on the same day and zometa infusion a month later.
Member
Posts: 526
Registered: ‎15-04-2017

Re: Palbociclib

P.s. I was given a zoladex injection, then a week later I started letrozole and two weeks after that palbociclib.
Member
Posts: 526
Registered: ‎15-04-2017

Re: Palbociclib

Hi Amy. So sorry you’ve had to join us.

I had a year after my initial diagnosis before I found out it had spread to my liver. I can’t inagine how difficult it must be to find out your stage 4 straight off.
However you’re feeling now, I can promise you it does get easier.
There are ladies living very very long lives with bone mets.
I’m on the same combo as you. I’m 44 now. I’m half way through my 3rd cycle of palbociclib and honestly I’m tolerating it very well. The worst thing for me seems to be the zoladex and letrozole. The hot flushes are a nightmare. I’m also very tired around lunchtime.
I haven’t changed anything. I’m still going about my normal business, socialising etc.
My wbc has been low since cycle 1 but I’ve still been able to have my meds. First scan to check if it’s working is next month.
Let me know if you have any questions. X
Member
Posts: 4
Registered: ‎07-10-2018

Re: Palbociclib

Hi, I'm Amy and have just starting out on this journey, 39 and straight to stage 4 with bone mets. I had 1 cycle of FEC and lost most of my hair but now the receptor status is back the plan is zoladex, letrozole and palbociclib. I had the first zoladex 10 days ago. I've been told to start letrazole and palbociclib 4 weeks after the zoladex- was this the same for you ladies?
Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: Palbociclib

[ Edited ]

Mags, definitely try to stay germ free while on Palbo, especially at the end of your cycle when your neutrophils will be low. I don't tolerate the drug well, so I can tell you all about raised temps and snotty colds and hospital admissions! I go from sniffly to hospital in 48 hours if I'm not careful. I have my GP on speed dial for anti biotics!  Stay away from crowds, use hand wash, and stay warm and well wrapped up out of doors - these are my top tips. X

P.S forgot about the Manuka honey which is ace for sore throats , and the tea tree toothpaste which gets rid of mouth ulcers. Just little side effects for me of low neutrophils. 

Member
Posts: 7
Registered: ‎07-06-2012

Re: Palbociclib

Ok back again, hopefully sorted login problem.
First thing want to say is,thanks to you all for helping the process that has allowed me to have palbociclib without having to pay for it.
What concerns me is if I catch a cold or virus from anyone, can it knock me for six quite quickly. Touchwood managing to stay bug free at mo😊
Member
Posts: 7
Registered: ‎07-06-2012

Re: Palbociclib

Hi thanks for comments,when I can figure out how to stay logged in, I will be back. Using a temporary login at mo.
xx
Member
Posts: 7
Registered: ‎07-06-2012

Re: Palbociclib

Thanks for this, I'm having problems which I'm trying to sort with logging into the website. I have to get on with temp one from breast cancer care,waiting for someone to ring back 🙄
Member
Posts: 526
Registered: ‎15-04-2017

Re: Palbociclib

Well explained Kate. Thanks. X