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Member
Posts: 34
Registered: ‎20-03-2013

Re: Palbociclib

Hi Sarah

 

I had my first scan just after my third treatment. I don't want to speak to soon but my hair seems to have stayed the same over the last few weeks . I have been using nioxin which is what Nicky from this site suggested. 

 

With regard to markers, my onc says they're only a guide and the main thing is, as Annie said, what the scans say. I did use to obsess a bit over them when I was first diagnosed with SBC and it has taken me really until this last year or so to realise that that's adding to the stress of living with it. I now only ask for my marker just before I have a scan. Still not sure if that's the right thing to do but so far it has helped. 

 

Xxx

 

Member
Posts: 15
Registered: ‎17-07-2016

Re: Palbociclib

Thank you AnnieJ for the reply and I need to take a leaf out if your book and not worry about these tumour markers and just get on with life.

 

I wish you all the best with your treatent.

 

Sarah x

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

Re: Palbociclib

[ Edited ]

Hi Sarah, just jumping in here. I get a CT scan every 12 weeks. My experience with Palbo hasn't been wonderful as my body doesn't tolerate it well. I am currently on 75mcgs, on a 2week on, 2 week off cycle. (Which is why I'm talking weeks and not cycles.)

I'm pleased my Onco doesn't go much on tumour markers as I would worry if they fluctuated. He's very clear that there are lots of other things to take into account, and so long as my scans show the tumours are shrinking I can get on with life. I would be a basket case worrying about tm's. My hair has thinned but it's still ok. I suppose a plus is I don't have to shave my legs so much! X

Member
Posts: 15
Registered: ‎17-07-2016

Re: Palbociclib

Hi Coolgirl,

 

I have just completed my second cyle nd like you my hair is thinning although it was only really recovering from my initial chemo...I wondered from others who experienced this if the thinning slowed down or am I likley to end up lossing it again.

 

I alos wondred if you had exeprence of how your tumour markers respinded in teh initial stages of this treatment as mine have risen again and sadly my oncologist s on leave at present so am unabe to discuss this issue with him.

 

I am also having my first scan tomorrow to see how I am responding to treatment depite the fact that I was initialy told that the first scan would be following the third cycle. 

I just wondered if you recalled how many cycles you had before your first scan.

 

 

Member
Posts: 34
Registered: ‎20-03-2013

Re: Palbociclib

Hi, I have just had my thirteenth cycle this week. My bloods (neutrophils) have been slightly lower than normal from the start of this treatment but have remained level enough for me to keep having the drug. I have felt fine so far...touchwood. The side effect I have had which has affected me the most (mentally) is hair thinning. I have now just about got used to this. I have had two stable scans on this and have another in November so fingers crossed. xxx

Member
Posts: 224
Registered: ‎14-03-2018

Re: Palbociclib

I have been on Ibrance since April. No side effects to speak of yet apart from the white cell count which keeps going too low and I have to have a break. My tummy can be a little upset but that passes. Doable I’d say so far!
Member
Posts: 1
Registered: ‎19-10-2018

Re: Palbociclib

Hi Anne30

 

How are you getting on with Palbociclib?

 

I've just started and would be keen to hear from someone who is futher on

Member
Posts: 224
Registered: ‎14-03-2018

Re: Palbociclib

Thank you. That’s very informative x
Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Palbociclib

Hello Anne
That's good that you have access to this new drug as it's only available for first line treatment at the moment. It's producing some very good results especially in the US which have had it for several years now.
My oncologist says they are all fighting hard to get it for all secondary ladies and clinical trials are proving good on heavily treated chemo patients too.
If you do need further advice ..there is limited threads here but there is another website "Inspire" which is US based with a lot more help there as it's been used for several years.
Hugs xxx
All the best ...
Member
Posts: 224
Registered: ‎14-03-2018

Re: Palbociclib

It’s very clear! Thank you
Member
Posts: 306
Registered: ‎30-09-2017

Re: Palbociclib

Anne, it can be confusing! Once you’ve brought up the thread reply via the ‘reply to this thread’ tab on the upper left hand side  or you can just post using the reply tab under the last posted comment. ‘Reply to this thread’ is probably the one to use unless you’re replying to someone but either way yours will end up on that thread. Hope that makes sense??? Kxx

Member
Posts: 224
Registered: ‎14-03-2018

Re: Palbociclib

Thank you! I meant to add to the thread but never seem to manage to put things in the right place! Sorry
Member
Posts: 306
Registered: ‎30-09-2017

Re: Palbociclib

Anne, I can’t help with this but if you look further down you will see a thread already about Palbociclib, think you’ll be better posting there rather than starting a new one. Sure there will be much advice there xx

Member
Posts: 224
Registered: ‎14-03-2018

Palbociclib

I am about to start this on Monday. I was diagnosed over a month ago straight to stage 4 with bone mets. Have started hormones and will then start these pills. I was expecting to go into hospital for chemo for the day. That’s what the beast team said but then the oncologist said tablets. I’m just doing as I’m told but hope these tablets are strong enough to shrink my tumor and maybe bet the mets a little under control. They seem to have a lot of side effects. Any advice?