Stage IV NED crew : let's support each other

Bjs Miller- wonderful news!!!!! Keep them coming!!

Caryn, congratulations 🎈🍾🎊🎉

((Hugs))

Chelle

jensgotthis,

I have been NED twice, once for 3.5 years and again currently,for about 4 months (scan coming up soon so fingers crossed that it continues).My onc has said he wouldn't be surprised with 10 years out as well.    It has changed my mindset to some degree.  I am grateful for each day, can plan out for many months without worrying too much (tho I do buy travel insurance ) and just try to enjoy.  That being said - we know the other foot will fall eventually - a piece those around me tend to deny (UGH)  So whether it is in ten days or 10 years - we know where this is going.  I tell people I live with a healthy sense of denial and a great deal of hope - it is a balancing act every day.  

Scan day will bring the worry back-but like many others I have learned to manage (there is much support here!)

Our friends and family want the best for us, but we are the ones with boots on the ground so to speak.  Live your life the best way for you, balancing everyday.   Do what you want, what brings you joy and laughter.  I am 63 and just dyed my hair purple - just because I can   And someday I will likely loose my hair again, so having fun now

Nel

I was diagnosed stage IV de novo in March, and now, following 6 TCHP infusions (and 3 HP alone), surgery, and radiation, I've had my second set of clear scans and am officially joining the NED/NEAD club! I'll be on herceptin and perjeta for who knows how long and on letrozole for 5 years. I'm hoping and praying they, along with healthy eating and exercise, keep me NEAD! So happy to be posting this, though I know the journey forward is all but certain. Hoping and praying you all continue to be NED/NEAD as well! Xo

I've managed to keep a positive attitude from the start, trusting my team, and that I would be okay. When I got to NED/NEAD, it did give me even more positive drive to push forward with plans, to think, I can do this, and life is good. I did feel a weight lifted and that I could finally exhale. MBC may take me one day, but I know today is not that day.

Congratulations on your new status, Jen and MommyErin, and may it last for a long, long time!

Hi all

I was dx Stage 4 on March 15th. Had 4 THP. Two weeks ago I received a PET scan report which said: " complete clinical response" I haven't met my onco to discuss in detail but I think this means NEAD as it also said " no metabolic activity"

I am waiting to be considered for the CORE trial and the PET was to see if I was still oligometastic.

I am quietly hopeful, working full time and trying to retain as much normality as possible.

Hello to all on this thread.

Liz

hey Liz! Where could I read more about core trial? I'm curious! Where will you participate for the trial?

And celebrating with you!!!! Awesome scan!

Liz, I read your report the same, too; sounds good. Congratulations and welcome!

Hi

Thanks for the continued good wishes. I am still waiting to hear about this core trial. There are certain places in the U.K where the treatment is offered, for example The Royal Marsden in London, Manchester and Sheffield.

Sorry for such bare details. I haven't looked into it too closely as I don't want to be disappointed. I have a meeting with my onco on 14th Dec and may know more by then. I wonder why it is taking so long. Sheffield have had the scan over a week ago?

My understanding is that oligometastic patients are randomised into either standard radiotherapy or SBRT. 6.5 years ago I ha 15 rads over left breast. The tumour is in a mediastinal LN so probably the original rads field.

Will post more if and when I hear.

Liz

I hope you get into the trial, Liz. Let us know. I'm also rooting for news of "complete clinical and metabolic response" from your MO.

jensgotthis, looks like you got an "abscopal effect" from SBRT to one site. Or chemo could have killed all the buggers. 

Hi Barbara,

I’m still here. NED currently. On HP and trying hard to keep the dark clouds away. I was DX stage 4 in March so glad to see the back of 2017.

Happy New Year to you and everyone on this thread. Hopefully people will post in 2018 with updates on their progress.

Happy New year...still NED....only since July 2017....but a girl can continue to pray.

Happy New Year everyone! Here's to NED for 2018!

Happy New Year!

Still showing ned, it has been five years now since my stage 4 diagnosis. Five years ned since they treated me for my spread. Amazing; life is good. Left over side effects remind me that I am still here, lol.

TNBC is scary, but ned can be reached.

Have as much laughter and moments of joy each and every day that you can.

hugs Rose

Greetings.

I am at the beginning of my eighth year of dealing with mbc. The good news is that after those first months in 2011 of neoadjuvant chemo, a lumpectomy and 33 rounds of radiation, I have remained stable on Arimidex ever since. I scan every six months, the last time was in August. I was dx with er+ her2- bc with mets to hip, rib, scapula and scattered on the vertebrae. I continue to get a zometa iv, a bone strengthener, four times a year.

jensgotthis, you asked if NED results help us shift to a more positive outlook. A definite yes. When results change, I will deal with it at that time.

I learned it is about living with mbc, not dying from it. There were moments I didn't know if I'd be around for, like my niece's wedding three years after diagnosis, my son's college graduation four years after diagnosis, or that Bahama cruise I booked a year in advance. They all came to fruition.

At this point, it almost feels a bit surreal. My body aches daily from the arimidex, but I do my best to live above the discomfort. I hate the doctor visits and scans. There is a grey-ish stain on life from mbc that cannot be washed out, and yet I am always aware of how much worse it could be. A friend's sister died last year of ALS, a horrible disease. A seemingly healthy acquaintance in town, loved by all with a wonderfully sparkly personality and not yet 50 years old suffered a brain anyuerism in early December and remains unresponsive in a coma. A former classmate of my son died of an overdose. I can only feel sorry for myself in small doses. Then, I must get on with life.

I seek more meaningful interaction with others, try to keep things simple, eliminate stress where and when I can, try to do less of what I don't want to do and always look for more things that lift my spirits and give me something to look forward to. Good ideas even if you don't have mbc!