NED

[caw517]

I see a lot of you mention NED in your post. I'm assuming this is told you by our oncologist. I'm very interested in if you know how they make their decision to use this term. I have never had it used by my onc. thanks !!

[tessibop2002]

NED means No Evidence of Disease, If your PET scan is clear and your number are lower then the cancer level you are considered N.E.D. Its the same as remission, sometimes it can last for months, sometimes years, I asked my doctor what this all means and he said its kinda like the cancer is sleeping, I hope this helped you.

[hdhonda]

Mine uses the term stable. Blessings, Hannah

[diamags]

Mine uses No Progression of Disease. I've been blessed with that for 5 years. I am extremely grateful.

[Hidden]

Hi Caw,

I have heard of NED being used on this site too. My oncologist says that I am stable, meaning the disease is under control with no progression.

Take care,

Sophie x

[caw517 in reply to Hidden]

I guess that's what I was talking about. My onc says I am stable when my PET scan shows no or minimal progression. I 'm coming up on 3 years of MBC and 23 years since my original diagnosis ,. My understanding is stable is as good as it gets. The bone mets are in multiple locations and not going away-- but like I said .. stable. I am happy with that-- really happy with stable-- but felt confused by the NED term. Guess it's just how each onc chooses to call it.

Take care-- and stay strong--

Carol

[Hidden in reply to caw517]

Hi Carol,

I can handle hearing I am stable too. It means that the treatment is working and we can stick with our current treatment regimen. It sounds like you are doing really well. It's been 10 months since my diagnosis and 8 since I started treatment.

Take care,

Sophie x

[Rhwright12]

I thought NED was both clear scans and normal TM numbers...right now I have normal TM numbers and my bone scans are clearing up but aren’t totally clear yet...but I’m 2 1/2 years in so stable/slow improvement with no progression is good news! 😀

[Hidden in reply to Rhwright12]

That is wonderful news! You are doing so well.

Sophie x

[caw517 in reply to Rhwright12]

Stable with no progression is what I always pray for-- excellent news !!

Carol

[mariootsi]

Hopefully all of us will hear NED from our oncs. This is what I'm praying for while waiting for a cure!!!!!

[Hidden in reply to mariootsi]

Me too, Marianne!

Sophie x

[Rhwright12 in reply to mariootsi]

Hi! I read a promising article today posted by a pastoral friend of mine, Israel thinks their close! Clinical trials to start soon. Her2 vaccines in clinical trial to start here soon...5 years is going to be a game changer here!...I’m going to patent the phrase “I had cancer when cancer when cancer was deadly” and go on Shark Tank and sell all kinds of products with the logo on them. 😀 Anyone want in? 😂😂😂

[mariootsi in reply to Rhwright12]

I'm in Rhwright12!

[mariootsi in reply to mariootsi]

And yes. Please post the link. Are you in the US?

[Barbteeth in reply to Rhwright12]

I read this on Facebook..it just popped up and I can’t find it again

The research has been on mice and they’re starting clinical trials soon...tbh it sounded too good to be true..sorry being pessimistic as ever

Barb xx

[Rhwright12 in reply to Barbteeth]

I know Barb...that’s why I’m saying 5 years...they are saying 1-2 in the article...but that’s over there...it could easily take a few more for our FDA to approve...so I understand your cautious optimism 😀

[Have-faith in reply to mariootsi]

Me too!

[Staysha]

Hi Sandra. Not sure if this is the same article but my friend sent me this.

israel21c.org/could-an-immu...

[Staysha]

Check this one out. I saw it on the Atlanta news.

google.com/amp/amp.fox5atla...

[Rhwright12]

It won’t let me copy and paste here but the website is jpost.com...it’s the Jerusalem post...under health and science... it’s an article from 1-28-19...it appears to be related to the one Staysha mentioned...😀...Yes I’m here in the states! Ohio! we are under a deep freeze warning for the next 48 hours...no school tomorrow so I get to stay home and stay warm...😎

[Hidden in reply to Rhwright12]

Is this the link?

jpost.com/HEALTH-SCIENCE/A-...

[Rhwright12 in reply to Hidden]

Yep that’s it! 😀 Like I said hopefully 5 years from now they’ll have this thing cured...😀🎉

[Hidden in reply to Rhwright12]

Let's hope so! In the meantime, we just have to stay strong, keep a positive attitude and do what we can to improve our health.

Sophie x

[Rhwright12 in reply to Hidden]

Yes exactly! I was reading these responses yesterday during Yoga class which is before Les Mils Body Pump class...Namaste!

[Hidden in reply to Rhwright12]

You sound active, just like me! I go to the gym and walk for hours each week. I can't just sit around and veg all day long. But when I do I end up regretting it!

[PJBinMI]

I'm a long timer with bone mets, 15 years this March, and have only been NED for a relatively short period of time, under one year. But I have been stable for most of the time and have not had symptoms from the bone mets. So, personally, I think NED is overrated! Stable is very good news. And sometimes even slower progression can be good news. How I feel on a day to day basis is more important to me than TMs. Not all oncs use the term NED.

[Have-faith in reply to PJBinMI]

You are inspiring! 15 years. Thank you for sharing with us.

[caw517]

Wow ! 15 years! that is what I love to hear ! I agree, I am pleased with stable !! What has been your treatment over these years? what are you on now ?

[Rhwright12 in reply to caw517]

Yes! What are u on? I was recently changed from Zometa to XGeva. Not a fan...more bone pain and aches...not excessive but I definitely can tell a difference...😀

[PJBinMI in reply to caw517]

I can tell you what treatments I have been on, but that might not be the best treatment for you! BC comes in different forms and what works for one of us doesn't work for another, even if the cancer cells seem quite similar. Before I list what I've been on, let me list a few of the things that can point in the direction of our doing well: hormone receptor positive mbc plus a good response to hormonal tx, her2neu + mbc and a good response to her2neu targeted tx, being older at time of diagnosis, having bone mets only, if a recurrence from an earlier stage bc a longer time between initial diagnosis and mets diagnosis. But there are exceptions to all of that! predicting is hard to impossible! I was first on Letrozole (aka Femara, an aromatase inhibitor) along with Zometa infusions. Got almost five years on that with minor progression and still only bone mets. Then on Faslodex for over 9 years. Zometa switched to Xgeva as soon as Xgeva approved by FDA. (I am allergic to Zometa and getting it required lower dose, premeds, extra infusion time and extra IV fluids) In year 7 of the 9 on Faslodex, Ibrance added but it damaged my lungs. January of last year, switched to Aromasin. My original onc retired last year....she was just the right onc for me! Experienced, direct, and kind though not in a huggy touchy feely way. My new onc is younger than she was and very different in personality. I like him, but miss her! lol I've a lumpectomy, no radiation. Saw a bc specialist for a second opinion after initial staging. Will see her again when I feel a need to. (almost 3 hour drive each way to see her) I think of myself as really lucky to have nice easily controlled cancer cells. And of course if I had known in 2004 that I would still be here in 2019, I would have worried alot less! lol but life is not lived like that.

[Juliandrea in reply to PJBinMI]

So you have only been on estrogen positive blockers and bone meds. Nothing to kill the cancer

[PJBinMI in reply to Juliandrea]

Those of us with an estrogen positive bc often do well for a long time using meds that block the estrogen that the cancer cells depend on. I don't really understand your question. For E + mbc, hormonal treatments are usually much more effective than chemo.

[Juliandrea in reply to PJBinMI]

Yes I agree that the hormonal treatments are necessary for us for sure. Because some of us take Ibrance and Letrozole for example and others only take hormonal treatment. I was wondering what the difference is.

[kduck in reply to PJBinMI]

My mbc is same as yours and I hope i get 15 yrs like you and more. Im not taking ibrance just falsodex and xgeve. I have been ned for a yr without ibrance. I do still have aches and pains but I am doing good. So are you doing ibrance? What are your treatment now?

[Hidden]

Stay warm, ladies! I heard that there were severe weather warnings in place in parts of America, so hopefully it won't last long. We had a little bit of snow overnight here in the UK and now it is mostly gone.

I hope that these studies will be promising and beneficial for us, and not just for people who will be diagnosed with cancer in the future.

Sophie x

[caw517]

I’ve been on Ibrance and exemestane since it metastasized to my bones in’16 . First diagnosed in’96 with breast cancer and treated with chemo and had a mastectomy. Then in’13 it was back so more surgery and radiation and 5 years of arimidex. Then in ‘16 MBC......