Hi Sian, I’ve been on Palbo and Letrozole for three years now, and as the other posts say it’s a good combination. When Covid first appeared on the scene my Onco immediately took me off Palbo as my neutrophils drop quite severely during treatment and he thought it was too dangerous for me. I have resumed treatment now but am struggling with fatigue. As I don’t tolerate the drug well I am on 75mgms dosage , and my schedule is two weeks on, then two weeks off so my neutrophils recover . My Onco kept a very close eye on me when I first started treatment and played about with dosages and timings until we reached one that my body tolerated. He would never put me at risk, and I’m sure your mums team will be as protective. Wishing you both all the best. X
thankyou so much for the honest feedback. You all are so brave and strong and that’s what I wanted my mum to see.
Fingers crossed she only suffers mild side effects and they can sort her dosage fairly quick so she can live as full a life as possible.
We have been through the mill quite recently with tragedy losing my sister to covid and also her sister,my aunt also just diagnosed with bowel cancel (and having a whittle operation in a couple of weeks), so I have encouraged my mum to think about her own health and do what’s right for her. These messages have help massively. Thanks again
The 50% shrinkage happened after my first 3 cycles and then I’ve been stable since.
I’m glad to hear you and Ruby are doing well on Palbociclib. It really is a doable regime - even if you’ve had to have your dosage adjusted.
lots of love to you all xx
So encouraging! I’m on my 7th cycle - when I started in January I was sooo worried that I would completely change. Luckily I did not!! The palbociclib dose was reduced after first cycle to 100mg and have been on that ever since along with letrozole and zoladex. I’ve tolerated the meds well and am ready go back to full time work in September and just really want to carry on as I did before diagnosis.
May I ask, how long after being on Ibrance did 50% shrinkage occur? I’ve have had 2 scans and all I know is that things are ‘stable’ which I know is good result.
All the best
I’ve been on Palbo for just over 3 years now. I’m also on Letrozole and have denusomab injections every 8 weeks. I have sbc in two of my vertebrae. I initially started in the 125 mg dose but found that a struggle so it was dropped down to 100 mg. I am 64 and I think I manage quite well with the side effects. My hair has thinned but it’s not too bad. I find I get out of breath easily when walking and I get very tired. The Letrozole give me hot flushes and affect my sleep pattern. As long as I keep the side effects in mind and don’t overdo it, I just carry on with my life. I’m so grateful that I’ve been able to take this drug and for the extra time it’s given me. I know things will change some day but I’m making the most of it while I can.
Like Pawsome (who I have found an inspiration), I am also on Palbociclib and Denosumab. I first had Primary Cancer 15 years’ ago and since then have struggled with my energy levels and possibly have undiagnosed Chronic Fatigue.
Prior to my Secondary diagnosis (in the bones) last November, I had spent the previous few years with ever decreasing energy so when I did get a diagnosis apart from being understandably upset, 10% of me was relieved to know I had a reason for feeling so rough. Anyway, this is my backstory (everyone is different) and I have now had 7 cycles of Palbociclib plus monthly injections of Denosumab and also Zoladex. The latter shuts down my ovaries as I am perimenopausal.
Like Pawsome, it did take 2 or 3 cycles to fully adjust to the treatment but as of now, I can honestly say, hand on heart, I feel physically better than I have done in years. I was anaemic prior to the treatment and I am now on the lowest dose of 75mg. I did start on the highest of 125mg then went down to 100mg but the 75mg suits me and ensures I get the cycle every 28 days. The treatment can affect your white blood count and so my neutrophils kept being too low (below 1) for the next cycle to take place.
Anyway, like Pawsome’s post, I hope this reply encourages and reassures you and your mum.
Very best wishes to you both xxxxx.
Hi. I’m part way through my 10th cycle of Palbociclib. I started last September. It took my body a few months to get used to the meds - mostly headaches and a bit of nausea. But these soon settled down and I also have meds to manage these side effects if I do get them. I’m still on the high dose of 125mg. I work full time and live my life exactly as I did before I was diagnosed - I’m a very fit and active person and enjoy running and hill walking. The shielding guidance pauses the need to shield from 1 August so there is no formal need to shield beyond that. Although I think everyone is making their own personal choice about what to do. For me my bloods tend to be low at the end of my cycle so that’s when I need to be careful. But then I’m not rushing back to any shops anytime time soon. I also have bone and lung mets. Palbociclib is an amazing drug and we are very lucky to have it available of the NHS. It has reduced my disease by 50% and my scans since have been stable. I know of many ladies who have been kept stable on it for years, although the company literature states an average of 2 years many ladies are remaining stable on it for longer. I have the odd bad day but for the most of the time it doesn’t feel like I’m on treatment at all. I’m also on denosumab. You might feel a bit fluey after the first two injections but after that most people don’t get any side effects at all. I’m also on letrozole and zoladex.
Can someone be brutually honest and offer advice about the side effects of this drug - my mum was diagnosed with breast cancer in January after hiding a lump for 18months. After scans, it's spread to bones and lung & diagnosis is stage 4. She has been offered this drug along with Denosumab (which is the injection into her belly), however the side effects in the fact sheets are pretty scary but the consultant seems to think many people don’t suffer too badly.
She refused Palbociclib on her last visit to the cancer hospital about 6weeks ago as would mean she would have to shield & I vowed to investigate on these forums how it would effect her before we attend the next appointment.
My primary concern is that her immune system will weaken and the side effects sound similar to some of covid - temperature, chest infections etc and id be scared that we will be constantly thinking she has that.
Can someone please let me know how they get on with it.