Stacy

[Ycats277]

Hi , I went for my normal zometa infusion, FASLODEX injections monthly , and I take verzenio 2x daily . After being so excited and hopeful after reading so many awesome stories about some getting results NED, I asked my onc if there is ever a chance that I could be NED and his answer was not likely I feel like getting the news that I have metastatic breast cancer all over again , I’m crushed . I have spread to my right ribs and a lymph under left arm which has disappeared , at least I don’t feel it at all when I self examine . I used to feel a lump the size of a large cherry. Last PET scan 6 months ago came back no change , stable disease . I was so happy 😀 existing and waiting patiently for a cure . Now I feel like one foot out the door . I’m crying all the time again . I am ER/PR + was diagnosed in 2015 early stage 2 but the tumor was grade 3 , that is probably why It spread . So sad 😞 I have METS since 2017. I sure would like to hear from any with a similar anything . Soft hugs to all 💐🌹🌺🥀🥀

[hdhonda]

Grebnesie,

My first oncologist (he retired) used the word NED with me. They say stable now. Stable or small growth is good. I was diagnosed with Mets to lungs in early 2017. We unfortunately won't be cured without divine intervention, but we can live for years. They are doing a lot of research on breast cancer, so who knows what the future holds. We just have to keep on trucking. We all have down days at times and then we pull our bootstraps up, put our happy face on and do something we enjoy. Blessings, Hannah

P.S. I don't think NED should be used on stage 4. It is misleading.

[Ycats277 in reply to hdhonda]

Loved your reply , so I did feel bad but your post lifted my spirits this morning . Yes stable is great 👍🏼 and I’m happy you are stable . They said no change and stable for me . I will take that and be happy for that . Thanks so much for your words 💐

[Teddielottie in reply to hdhonda]

Yes , my onc uses the word “stable” too !

. After a ct scan for bone mets a couple of years ago , she mentioned that although in bc there is no such thing as remission , I was as close to it as could be ! I asked her, having seen it on this site , whether I was N.E.D. , and she said yes, you have “no evidence of active disease “, but she explained to me , that I would continue on the treatment , as it was working , and with this disease , at present , there is no way of knowing if there are any microscopic cancer cells hidden anywhere, so I have to remain on this treatment until it stops working, then look at other treatments , ( or hopefully until something even better comes along!) . 🤞x

[Ycats277 in reply to Teddielottie]

So thanks for your response, but let me explain to you what I learned . NED (no evidence of disease ) is different then NEAD ( no evidence of active disease . You are saying one thing above and defining another . I am NEAD , but not NED . If we have bone METS they leave scars when they heal or move , so that would never allow me to ever be NED . I have no old areas scars lighting up because it ate the contrast ( sugar)and no new areas since last PET , so I’m stable disease aka NEAD . Xxoo 🌺🌹💐

[Teddielottie in reply to Ycats277]

Yes my onc always uses the word ‘ stable ‘ as per my radiographers ‘ reports , but based on what you have said , I would be N. E. A. D . and not N.E.D . ! I haven’t ever seen NEAD written as such on this site or elsewhere ? But I am happy to be ‘ stable ‘ for as long as possible , until the amazing researchers find something even better for us all ! x

[Ycats277 in reply to Teddielottie]

I wasn’t trying to correct you I was informed on here and it made sense to me so I repeated it to you. I hope I am correct with my analogy of my new information. It made me understand something that I did not understand and I will ask my neurologist if I’m correct. That would explain why when I asked him if I would ever be any NED he said not likely Because I have bone Mets and probably lots of scarring just not active. I wish us both NEAD for a very long time and if you are NED , that is just awesome for you 😍🌺🌹💐

[Teddielottie in reply to Ycats277]

No problem ...I understand where you’re coming from . I have no medical background , but I was very happy when my onc (in summary of my 4 th scan to my GP in December ) said that I was doing ‘ remarkably well ‘ and that meant so much more to me . Hoping it continues for much longer!

We are all wishing for the same thing on here ...and that unites us ! x 😘

[Kiera49]

Hi, I was excited at first as my first few scans showed I now had less tumours and the others had reduced in size, but last few scans showed a stable result which I was really disappointed with but onc said your chest scan looks really good, now I realise if I'm keeping it at bay that's a good result. I call my cancer Colin as I don't know anyone called colin and it's someone to swear at and the ibrance the colin pill. I wish you all the best. Tracey

[Ycats277 in reply to Kiera49]

That’s great 😃

[Kiera49 in reply to Ycats277]

Got next one on sat 🌻

[Ycats277 in reply to Kiera49]

Good luck 🌺🌹💐

[Kiera49 in reply to Ycats277]

Thanks was more nervous going into hospital than the scan, but it was fine plenty of safety measures in place

[Ycats277 in reply to Kiera49]

Thanks , i will go into Jose Melo with a new attitude . 🌺💐🌹

[mariootsi]

Stacy we are with you and here for you.

[Barb5]

Grebnesie

Hi I’m on same meds except zometa I’m on xgeva. I was diagnosed July 3 2013 this July will be 7 years diagnosed but had 2 years before that took that long for someone to listen to me. I’m always searching for NED also like you but I’m learning to be happy with stable with just a glimmer of hope for NED . What a celebration that would be! But knowing this disease it would I’m sure be short lived so let’s celebrate stable🎉

Wishing you the best❤️

[NamasteLove]

Don't lose hope. I don't ask or pay attention to the 'statistics' about how long I might have to live. Regardless of what the scans and studies and doctors say, THEY DON'T KNOW. We alI have different cancer profiles. We have different physiologies. There is no one size fits all approach in *treatment* for MBC. So, docs so a lot of *guess work* in deciding on medications, chemo, etc. There is much that they simply don't know. I look towards the future and each tomorrow and refuse to 'count down'.'

I try ( not always successful) to stay hopeful and focused on healing, rather that being in 'treatment.' MBC is seen by many as an chronic illness - like diabetes, etc.

I will readily admit that cancer is a b@#%&!! So unfair. But I work everyday to *try* to not let it overwhelm me.

Cry when you need to. And remember that this is your journey (unwanted, obviously) you have a choice in treatment.

I'm sorry that you are here with us, but we are here for you- to listen and support.

Nama

[Ycats277 in reply to NamasteLove]

So sweet , thank you 🙏🌺💐🌹

[hdhonda]

Sandra,

Stable is just a more realistic answer. I told folks I was NED when Dr. B told me that. Everyone thought I was cured. Blessings Hannah

[Teddielottie in reply to hdhonda]

I am exactly the same ... we are not cured ( yet !) , but wish it for us all . x 😘

[Ycats277]

I wasn’t trying to correct you I was informed on here and it made sense to me so I repeated it to you. I hope I am correct with my analogy of my new information. It made me understand something that I did not understand and I will ask my neurologist if I’m correct. That would explain why when I asked him if I would ever be any NED he said not likely Because I have bone Mets and probably lots of scarring just not active.