Metastatic/ secondary breast- POSITIVE stories

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Hello! I am two years into my journey now. When I was newly diagnosed I took a lot of comfort from reading a positive posts chain on here. It was started four years ago and reassuringly the chain is HUGE. So large that I find it hard to navigate and thought I’d start a new post for some fresh positive stories. If you have a positive story it’d be great to collate them to support people just like me, two years ago, coming to terms with diagnosis.

I was diagnosed stage 4 de novo (that’s stage 4 from the start) ER+ & PR+ with bone mets, in my 30’s with young children. For the last year I’ve been NEAD, or complete metabolic response on scans and I’m still on my first line of treatment. I’ve joined various Facebook groups full of people on the same treatment as me, plenty have been on the same first line of treatment for years more than I have- the other day I read of someone still on treatment from the original trials! I’m on Letrozole and Ribociclib, I was fatigued at first but I haven’t had any real side effects for five months now. I'm doing everything I was doing before. 

  • Hi  

    That's great to read that you've had a complete metabolic response and that you found the positive posts thread helpful when you first joined the community.

    In case anyone reading this thread would like to take a look at the thread you've mentioned, this link will take them there.

    It would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi Latchbrook, thanks for tagging in the other thread, and the tip to add info to my profile. 

  • Hi, was diagnosed stage 3 in 2018. Chemo, surgery and radiotherapy and given the all clear. Was on letrozole until August 2022 -  found two tumors in lungs and 2 in liver. No longer ER+ so stopped the letrozole.  Docetaxel and Phesgo took out 3 but still had a little one in my liver, just over 1cm. Stable tho, lazy bugger just sat there!  Still on Phesgo. 

    Last week I met with my oncologist who was grinning and told me there were changes in the CT scan - my brain shorted out - should I panic but she's smiling - what!  Scan was NEAD!  

    Now we're both grinning like maniacs. 

    What a lovely day Blush

  • HI Louise83ad your post has really given me a boost . Although I'm older than you at 56 & post menopausal, I was diagnosed in October last year with advanced IDC er/pr positve with lymph node & chest wall involvment therefore inoperable. 

    Ribociclib & letrozone are also my 1st line treatment & on full dosage which so far have tolerated fairly well. I've just started to feel less tired & feel really well. Could I ask if your wbc increase after a few rounds as this is the only thing stopping me going back to work ? I love my job but the environment isn't particularly clean !!

    Sorry for the waffle but I've been around the site since I was diagnosed but never saw anyone with this as a 1st line treatment. Thankyou 

  • Hi Batman 1. I was diagnosed with lobular  breast cancer in September last year. After a CT scan in november they discovered  a shadow on my liver which turned out to be metastatic. So the original plan of operating on my breast was put to one side and I was given Letrozole. 6,weeks later the lump in my breast has changed shape and the showdown/mass on my liver has shrunk by 50%. Yesterday I saw oncology and he is going to start me on Ribociclib after a full body scan and a ecg. I have remained positive and upbeat the whole time with the odd meltdown of course. I feeLntired and achy on Letrozole but hey I’m 70 so that’s probably normal anyway. Hoping my new drug will not have any horrid side effects. Unless you need tO and want to go back to work don’t. Enjoy your time doing something you enjoy.
    Anyway thought I would let you known we are twins in medication and I wish you all the best. Lizzy. 

  • That’s the best news. Well done to your oncology team!! 

  • We're all allowed a meltdown sometimes...its good for the soul ( so I keep telling myself )Joy. I think a positive attitude gets us through such a lot !

    I love my job & they've been amazing so I am going back for a couple of days a week.

    Hopefully your symptoms will ease as your body gets used to everything. I walk most days & it definitely makes me feel better.

    But any sickness I felt with the Ribociclib has almost disappeared now, skin feels better than ever after the first few months of shedding !!

    Occassional aches but all bearable & if I feel tired I watch a film.

    The nurses ask lots of questions every month so you don't even need to worry about telling what they need to know.

    Fingers crossed that any side effects settle down for you.  

  • Hi  

    Im glad my post has boosted you. It’s great you are tolerating well too, this treatment I think it so good  

    I am not sure my WBC has been low, I don’t see blood test results now. But my neuts are usually about 1.65. 
    I have two school age children so can’t really avoid bugs, I had Covid and a nasty cold in my first year- both times it took me longer than I’d expect to recover. 
    I hope you are able to return to the job you enjoy. 

  • Hi

    i have breast cancer in my lungs (stage 4). I’m 54.

    I too started on Ribociclib and Letrozole but the wbc dropped like a brick and a slight water infection put me in hospital for a week with sepsis on the very first cycle.

    The Oncologist then changed me to palbociclib and Letrozole and I have been on this for the last 5 cycles. I’m doing okay, dodgy breathing due to cancer in the lungs but apart from that I feel very lucky. Scans are showing stable Mabel and tumour markers are dropping. I don’t work anymore and have taken more creative pursuits. I’m teaching myself crochet at the moment, something I wouldn’t have done before. I’m drawing and crafting and reading and after a busy career involving a lot of travel, I’m feeling really blessed.

    Im looking at plants at the moment for the garden and I will watch them flower and bloom over the summer. (Once I convince the husband his job will be gardening as well as everything else Slight smile

    Keep smiling all, Spring is coming and hopefully a bit warmer drier weather.

    Happy to be added to friend requests Slight smile

  • Hi

    I was on ribociclib and letrozole as diagnosed last year feb 2023 with bone mets, I felt fine but sadly my liver enzymes became too high after 6 cycles so I’m starting soon on palociclib which is anGrinningher inhibitor treatment .. my cancer markers are 55 down from 140 when diagnosed so I’m staying positive Grinning