Hi all,
Hope i have the right thread this time 
. I was diagnosed in Nov 2023 with metastatic breast cancer. Nodules in both lungs and sternum. Still got ongoing tests but started on letrozole and starting palbociclib soon. Primary breast cancer was 5 years ago, eostrogen positive, stage 2. Was told they had got it all after lumpectomy and radiotherapy. Really in shock at the moment and struggling. Felt it might help to talk to othets going through the same or similar 
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Sorry that you find yourself here.
I have been on palbociclib since Dec 2020. The cancer has stayed the same since then. I still manage to work and I have 2 children.
Let us know if we can help at all with anything.x
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My friend was diagnosed with bone mets out of the blue some 14 years after her primary breast cancer diagnosis. Diagnosis came as a shock as she had facial droop which was diagnosed after a CT scan to rule out a stroke BUT 2 days later was called back as the CT scan had revealed elisions on her skull!! Anyway to cut a long story short she’s on Letrozole, Denosumab and Palbo. She’s been on this for some 15 months now and latest scan results say stable disease (got this info this week). Her main issue has been fatigue but oncology nurse suggested her consultant could reduce dose and that was done back in November and she feels better for it and it hasn’t reduced the effectiveness of the drug as far as anyone can tell. She also made it to the stats back in November for a 2 week holiday to see her son and his family including a 3 year old grandson who she’d only ever seen on line. She’s well past the menopause (67) but is coping well and she remains positive and can certainly spend time out and about with her friends. I hope all goes well with your treatment and you can still enjoy life even if it’s at a slightly slower pace.
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Hi
I’ve been taking Palbociclib and Letrozole now for 6 years and up until now have had stable scans
I’m getting my latest results next week so 
I have had a recent hiccup with cells managing to find their way to my skin in the breast so looking at starting elecrochemotherapy soon
I am 67 years old and although I am retired now I live my life to the full so try stay positive 
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Hello. I’m on a drug trial to see if a new drug works better with Palbociclib than Letrozol. I’m definitely on Palbo but don’t know if I’m on Letrozole or the trial drug. I’ve been on it for 18 months and the cancer is stable. My side effects are related to the location of the cancer and not my meds. I am living my normal lufe, working 3 days a week, exercise, long dog walks etc. Good luck with your treatment x
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i feel very humble when i read some of these stories. My children are grown up, its still hard but cant begin to imagine how it feels with young ones. Thank you for taking the time to let me know that.
These are all very positive so it definitely gives me hope, i have been imagining all sorts, thank you all so much.x
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Hi, like you I had primary WLE and Radiotherapy in 2018, all good until bad back April 2023……bone mets all interstate place. I’m on Ribociclib - a sister drug - and Fulvestrant (for ER+) and Denusomab fur bone strength. 4x radiotherapy to the worst of it and drugs working and getting done normal back now….its a journey. Hopes yours goes well.
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Hello, can I ask what the trial is called please? I saw there’s a new drug called AZD4573 that helps the palbo to work better if you have growth.
Hello. I don’t have a trial name just a number 80414843. And the drug is labelled GDC-9545 or placebo. I also take Letrozole or placebo and Palbociclib. So 3 drugs.
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Hi hope01 and everyone,
I have been on palbociclib and fulvestrant since the beginning of 2021 and have been stable ever since.
I am much older than most of you and must be one of the long term patients. I will be 80 in September and had my primary breast cancer in 1995 when I had a lumpectomy, radiotherapy ‘mild’ oral chemtherapy and then tamoxifen for five years.
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I dont know what happened but my reply got postedbefore i’d completed it. To continue, i was discharged in 2000. In 2015 i was ill and ct revealed i had a blockage of my small intestine caused by metastatic breast cancer. 20 years after primary. I had an ileostomy, FEC chemothery and anastrozole and denosumab as it was also in my bones. However i had to stop the denosumab as it affected my jaw, after about six years. All this time my cancer was stable. I wasthen put on the palbociclib and fulvestrant and have remained stable. My next ct scan will be 12 Feb so hopefully i will still be stable.
That is 29 years from my original diagnosis! I feel very very lucky although my health has been indirectly affected.
Hopefully this will reassure you about palbociclib along with the experience of others.
Windflower
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You had any PET CT Scan 5 years ago? I had been diagnosed with Stage 2 ER positive cancer in July 2023, got done with my surgery and radiotherapy and as I am pre- menopausal woman now I am on zoladex and anastrozole for the next 5 years.
I hope you recover soon and treatment goes well. But do check with your consultant an option to get a PET CT done towards the end of treatment.
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Hi, I was diagnosed with secondary breast cancer in the lung fluid in July. I first had a lumpectomy in 2003 with chemo and radiotherapy, it returned in the same breast in 2013 and I had a mastectomy. I was started on palcociclib and letrozole in September, I have done really well on it so far apart from 1 low white blood count. I had very slight nausea the first couple of months and loss of appetite, but now back to normal. I am hoping this carries on. I am just 69 and really hope to make my 70th! I am very chilled about the diagnosis but I think maybe it hasn’t hit home yet. I feel really grateful for the extra 20 years which I may not have had. I have seen grandkids and 20 years of a happy marriage. (I first had cancer 6 months before I was due to get married!). Any help or support I can give you I will be glad to. I am encouraged by the length of time some of you have been on palcociclib. 
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I was first diagnosed Dec 2020 stage 2 er+ surgery to remove tumour, clear margins, 2 weeks radio, tamoxfin.
August 3023 mets to sternum really painful, ribociclib, prostap injection monthly exemestine daily.
1st 3 month CT showed no change. Hoping next CT showing reduction.
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Gosh, no wonder you are struggling. Thats.a lot to take in all at once.
Hopefully you’ll find some reassurance here
All the best going forward.
@hope01 Sorry you are on this rollercoaster too. I was diagnosed in 2021 4 years to the day of my primary bc. I am also on Palbociclib and Letrozole aswell as Denosumab and Goserelin. I celebrated my 50th August just gone and will be 3 years secondaries in May this year. 3 yrs on Palbo August this year.
Feel free to message if you need to know anymore. If i can help i will.
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I have been on Palbociclib and Letrozole for just over 6 years now since my initial diagnosis
It’s been a wonder drug to me as I was diagnosed Stage 4 straight away
Stay well xxxv
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I’m 70 in May and have been on Letrozole, Palbociclib and Denosumab for 18 months now and although I have a few niggles from time to time, I’m doing OK. I have a scan next month and I don’t think any of us find them, or waiting for the results, easy but the rest of the time I’m just living a normal life. I find travel insurance a bit costly so it’s either cough up, take the risk or not go. One of the side effects has been that my hair has thinned a bit but that happens to a lot of people as we get older and so I’ve bought a hair topper which I’m really pleased with.
It took me a few months to get used to the treatment and I was on the higher dose at first but my bloods started to suffer and so the dose was reduced and things settled down.
Last month Oncology told me that I could drop down to having bloods and reviews every two months, they’ve been monthly up to now so I’m pleased with that, although my treatment will still be monthly.
Good luck. x
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Good to read that your treatment is going well and camcer is stable. For insurance have you tried Insurance With? The screening is long but i think the cost is reasonable.
Such an uplifting pose! Thanks for sharing!