HI i have been on Palbociclib for 2years 4 months had treatment delayed by a week on 3 or 4 occasions due to low neutrophils was on 125mg dose then down to 100mgs for past 5 months some people i know are on 75mgs which also shows to be effective. I have had mouth ulcers too but used Iglu gel which works well and never delayed treatment because of it. I have secondaries in both lungs base of spine and pelvis. Scans every 3 months showing things stable so its working. Also on letrozole and zometa infusion 3 monthly. Sometimes you have to shout to be heard and voice any concerns I always think you should care about yourself enough to want the best possible care its our right. Good luck and stay safe Liz
hi, I’ve been on palbociclib for just over 3 years now and although I occasionally get mouth ulcers they do generally settle down. It’s so frustrating that you seem to have been missed out. Having SBC is very scarey and the last thing you need is any delay in your treatment. Pawsome is right, there will be times when you may need to have a week or so break to allow your bloods to return to normal levels, that’s quite normal. I’ve been lucky in that most of the time the system has worked for me but on odd times it hasn’t I’ve had to do a lot of chasing around to get things back on track. You have enough to deal with both physically and emotionally without adding more. But do keep on at them and I hope you manage to get it sorted quickly.
Trust me you’re not alone in having to deal with a bit of disorganisation. Just make sure you keep shouting loud so they don’t forget about you. And it’s quite common to have a weeks delay here and there mostly if your bloods come back a bit low. So don’t worry about that either x
Thanks, Pawsome. Wise words. I guess I was anxious that no-one had got back to me and assumed (stupidly), that since I had secondary breast cancer, that I wouldn't get forgotten about. I guess that is how the NHS is now. However, I'm a medical secretary in the NHS, for a less important strand of medicine than cancer, and we always make sure that no patient falls through the gaps - new patients are made their first few appointments in advance. Once they're in the system, it's harder to forget about them! There is a definite lack of organisation with my Oncology team (BCN is off sick, and no-one is picking up her emails), and it is very stressful. I'm really glad the Palbociclib has suited you into your 12th round. It makes me feel hopeful going forward.
Hi I’m on palbociclib. I haven’t had mouth ulcers but it is a really common issue. Difflam is good at sorting out the issue. I’d have a chat with your BCN if I were you. I’ve found from personal experience that you need to keep on top of your oncologist and make sure they have ordered the medication and scans that you need. Some are more organised than others. But if you don’t advocate for yourself we can get forgotten about. We have to be on top of things. If you’re not happy with a weeks break then get on the phone and make sure they listen to your concerns. I’m on my 12th cycle and have responded well to treatment xx
I've just finished my first cycle of Palbociclib ok, bloods were ok, but I have a couple of mouth ulcers. I hadn't heard from the oncologist as to when I should start cycle 2, so phoned up to find that they had forgotten about me, and that it would be a few days before they were able to get the Palbociclib!! However on being told about the mouth ulcers, oncologist suggested I wait a week anyway, for them to go away. She forgot to do the prescription, so I managed to get my lovely GP to do it. However, he was sceptical (like me), that I should be taken off the Palbo for the whole of the second week. Has anyone had experience of this?
Many thanks x