21-11-2018 11:31 AM
21-11-2018 11:28 AM
20-11-2018 10:49 AM
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?
19-11-2018 12:05 PM
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.
17-11-2018 03:12 PM
03-11-2018 02:01 PM
03-11-2018 12:49 PM
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.
03-11-2018 10:31 AM
22-10-2018 06:02 PM
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
19-10-2018 04:24 PM
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
10-10-2018 04:37 PM
08-10-2018 10:47 AM
04-10-2018 10:32 PM - edited 04-10-2018 10:35 PM
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.
26-09-2018 10:53 AM