Thank you for mentioning about the 6/8 ER staining, I never knew what this was, just told given a figure of 8/8. Like you I was on Palbo and Fulvestrant (apologies if that is spelt wrong) for 3 months and following the CT scan showed progression and amd now on Capecitabine, started two days ago.
I am also working full time, quitting at the end of this year however, I do take on board when you mention about having time to think and you would rather be busy as if I let myself think I go to a very dark place. I am still coming to terms with my diagnosis of secondaries then a further diagnosis or progression, still very raw and fresh in my mind, what a rollercoaster, fingers crossed this settles down and the Capecitabine works, I have everything crossed.
Once again thank you for your feedback and long many you continue on Capecitabine.
Hi Lou and Mel,
I haven't lost any hair at all since being on Capecitabine. My hair is a bit thinner than what it was before, but I had the FEC-T chemo in 2019 and my hair had only just grown back to a buzz-cut length when I was diagnosed with secondaries and then started Cape about four months later. I've heard some ladies do have a tiny bit of hair loss with it but I personally haven't experienced this, for which I feel very grateful!
Lou, I am ER+ I think I was 6/8 on the staining test. I am also very slightly PR+. I was put on Palbo and Letrozole when I was first diagnosed with secondaries, for about three months. Then a CT scan showed possible liver mets so I was switched to Cape.
It is so devastating to receive this diagnosis and it does take time to adjust, come to terms with it and start to find a way of being able to live with it. Give yourself time to process all the stuff that's currently happening to you. Don't be afraid of asking (or shouting!) for support, from family, friends, GP, breast care nurse, Oncologist. Keeping busy is also important - I decided to keep working full time because I'd rather be knackered and busy than sat at home terrifying myself with my thoughts all day! I try to spend time doing things I really want to do and "live my best life now" rather than sleepwalking through it like I was before. Feel free to PM me if you want a chat! Sending love and hugs, hope you are getting on ok xxx
I was diagnosed with secondary breast cancer in my bones in March 2020. In the last month I have been told it has spread to my liver. My oncology team still think there are things that can be done. I'm still pretty fit and healthy, still working full time. Don't give up if it comes back to say it's in your liver. There's still options for you. Good luck with your results x
Sorry to read about your secondaries, I hope you're progressing well
I have read many post about Capecitanime and it seems doable. I was diagnosed with spine mets in Jun21 following CT and MRI scans and result yesterday the sad news is there is a tiny new spot on my liver and possible further nodules on my lungs (Onc said he couldn't even see these lung nodules but was advised by Radiologist there was something) I started Faslodex and Palb in July and this has unfortunately not worked for me. They are considering putting me on Cape, had blood test to confirm enzymes and if capitable. May I ask what degree of hair loo you have encounted? May I asl ask what type of cancer you have, mine is ER positive 8/8. I am only 51 with a 20 year old son and feel devistated. Thank you for any hep you can provide. Best wishes Louise x
Thank you so much.
After reading your replies I am feeling a little more positive. Im scared of not being myself ever again, and not being able to do the things that i always have, but we all adapt dont we?
I'm so glad you're feeling better and it sounds like you are coping really well - I only hope I can be there same.
Can I just ask - the meds that you are on, does you hair grow back while you are taking them?
So sorry to hear you find yourself here and then the additional diagnosis of "there's something in your liver". Its incredibly frightening and I've been through a similar experience so sending lots of hugs xxx
You'll find lots of positive posts, stories and chat here. Lots of people live with mets to the liver for a very long time as the right treatment can keep it under control. As someone else has already said, the liver is an amazing organ - it regenerates itself so it can cope better with mets than other organs.
I was diagnosed with secondaries in January 2020 and they thought there was something on my liver but I get a lot of cysts so they decided first it was that...then three months after being on Palbociclib they found some new lesions on my liver and decided it was definitely mets alongside some cysts. It was all looking like doom and gloom at that point and I didn't think I was going to live through the next 12 months!
I was switched to Capecitabine in May 2020 and since then, all my mets in my liver and bones have completely shrunk. My liver has mostly cleared up aside from one pesky met apparently. I've been stable ever since then.
Like you, I was petrified of dying and panicking about what was happening to me. I sort of had an epiphany when I switched to Capecitbine. I decided to fully embrace the "it is what it is" mentality that you also have. I found once I let go and decided to just accept things and get on with life, everything felt a lot better.
I managed to go back to work full time (working from home) and I manage short walks on a daily basis. I feel so fit and healthy compared to how I did when they first diagnosed me - its kind of incredible really. I still have days where I get side effects and I feel knackered or upset or afraid...but I have more good days than bad.
We're all capable of adapting and finding out what makes us keep going every day and you will too. Once you find that for yourself and you're on a settled treatment plan, you'll find ways of coping and living with this big uncertainty - so be kind to yourself, ask for all the support and help you need and drill your medical team with all your questions to get the info you need that will help you to cope! xxx
Thank you for messaging.
I know exactly how you feel. Its such a shock - we all, subconsciously, dont think it will happen to us do we?
I too keep feeling rubbish but like you I'm putting it down to anxiety. I havent even seen an oncologist yet so I have no idea what my treatment will be - its just so stressful isn't it?
Let me know how you are getting on and stay strong.
Aw thankyou 💓
I think i will join the chat. As much as my friends and family are amazing it would be great to people who know how your feeling. I find myself trying to protect their feeling because they are as worried as I am.
I have had my ultrasound brough forward now, because I said I couldn't wait that long, so its tomorrow now. Hoping for a miracle haha.
Thank you for replying - keep me updated on how you are as looks like we could be in the same boat xxx
Im in similar position, but my liver mets have been picked up on my CT scan, first after diagnosis of bone mets in hip and and only 5 weeks after starting Palbociclib. I had no idea pain in right arm/shoulder could indicate this!!! I too am very very scared, im getting a further scan on 3rd August, having given Palbociclib 3 full cycles to have hopefully shown some stability, however im doubting this as I don’t feel so good now (however praying this is my extreme anxiety!)
I really hope things work out for you and you are spared this diagnosis.
I was in yours shoes in March and the first thing I did was google - so Don’t. The information is misleading and frightening. Here you will get support and the truth. Ask to go on the Tuesday chat, which is great as you can chat with others in the same boat.
like yourself I have it in my liver and I thought it was a death sentence but it isn’t the liver is an amazing organ and can still function very well with the cancer.
My first scan in June (started palbociclib and letrozole in March) showed considerable shrinkage intact they had trouble finding it so there is hope.
take care and please ask if you need any help or reassurance
Thank you so much for replying.
I'm hoping its something else but I think I know. Its so encouraging reading about others who live with this everyday so positively and I really hope I can be as amazing as you all.
When I got my initial diagnosis I was ok but scared of losing my hair - pain and side effects didnt seem important I just thought it was a means to an ends and I would be ok in 18 months or so - but now all I want to do is live.
All these messages I read give me hope so thank you, truly.
Really hope you continue to be ok, and we are all here for the next few years to support each other.
lots of love xxx
understandable you are scared. When I was diagnosed in 1999 with BC they found something on my liver, a mass they told me. Well after freaking out big time it actually turned out to be a cyst which they drained and it went away ( it didn’t hurt).
My cancer did return 16 years later but am still doing ok. You will find lots of ladies on here who have liver metastases and we are all coping. There are lots of treatments and hope.
I know it’s hard not to worry but have a read around these boards and you should find some reassurance.
sending a hug
Maybe I shouldnt be posting but I'm terrified. I was diagnosed with breast cancer just over 3 weeks ago. They told me there was nothing to suggest it had spread and after the initial 'oh sh*t' feeling I was quite positive and always have an 'it is what it is' attitude.
At the results appt I mentioned my right arm was hurting so the nurse said she would put me in for a PET scan just to be safe (I would not have got this had I not mentioned my arm).
Went for the results on Tuesday and they have told me there is 'something' showing on my liver - COMPLETE SHOCK.
I now have to wait nearly 3 weeks for an ultrasound to confirm but in my heart of heart I know it is.
I'm trying to stay positive but everything you read basically says its a death sentence and I'm totally sh*tting myself.
Hoping some of you can help me in ways to cope