Stage IV NED crew : lets support each other
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Bjs Miller- wonderful news!!!!! Keep them coming!!
Caryn, congratulations 🎈🍾🎊🎉
((Hugs))
Chelle
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When you got to NED or NEAD, did you experience a mind shift toward the more positive? I've just gotten scans back that have me at NEAD and a dear friend implored me to build on this and live my life with thoughts toward the future and really do all I can with diet and exercise. Since Dx nearly two years ago, I've lived a
Full life as a single mom and working full time, while making sure to travel (which is something I love to do) "while I still feel good." I've lived with one foot in optimism that I have stage IV and my doc is hoping for 10 years for me and maybe even more, and one foot in reality that no one really knows so I need to make the most of now while preparing for a lesser time.
How do you handle all of this?0 -
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
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Great news kkrentz, bjsmiller and screech (great to hear from you)! Caryn, woohoo on expecting another grandkid.
I would agree with your friend, jensgotthis. I am 10 years out and am glad I decided to focus on getting stronger and healthier through diet and exercise 10 years ago after my diagnosis. Mainly I did it so I could improve my quality of life (in terms of sleep, mood, side effects, immunity, bone and muscle strength) and keep up with my 7 year old. It may have extended my life and certainly, without considering the cancer, my daily regimen has put me in a better position to combat dementia, diabetes, heart disease, etc, as I get older (retirement in 4 years!). Not a bad result. And should cancer return, if being in good physical shape helps us through treatments, then I'm ready as can be.
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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
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congrats mommyerin...praying for a long long dance with NED for all. We were diagnosed at around the same time. Happy dance!
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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!
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Just bumping this thread, to say belated Happy Thanksgiving to fellow Americans. So grateful that I'm still here to have celebrated my third holiday since dx and hoping for many, many more to come!
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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
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Hi Liz! That is super good news on your scan and I would be reading it the same way you are. Keeping everything crossed that your scans continue to read "complete clinical response".
Love n hugs. Chrissy
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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!
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Liz, it was interesting to read that patients randomized to receive SBRT will get it prior to standard of care (unless they’ve already done part of the standard of care steps). I had SBRT to the bone met in my hip after chemo but before my mascetomy. Curious about any benefit to the order either way. I only had the one site per my pet scan so my team suggested the rads. Weirdly enough CT scans have since shown heaing bone sites so maybe I wasn’t oligometastatic afterall. Love to see this stud
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Liz, I read your report the same, too; sounds good. Congratulations and welcome!
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Congratulations Liz, that is great news!
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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
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yes Liz - keep us posted and rooting for you
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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.
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Hey, this thread is pretty quiet again. How are you all doing? I see I didn't get back to wish everyone Happy Holidays, so cheers to you all for a very Happy and Healthy 2018!
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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.
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Hi there! Still NED and loving life......
Happy New Year to you all!
Love n hugs. Chrissy
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Happy New year...still NED....only since July 2017....but a girl can continue to pray.
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Love all the good news! Still NEDing here as well.
Also had a general check up before Christmas and all systems still go.
Happy New Year and keeping fingers crossed for everyone in 2018!
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have scans in a week and a half and fingers are crossed that I'm stil responding to Ibrance....May 2018 bring us more research breakthroughs!0
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hello friends! After a long year of chemo and a BMX, I continue on herceptin alone. Just had a scan that was Clear! NED!
Wishing everyone a great start to 2018 with more gratitude for each day forward
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Happy New Year everyone! Here's to NED for 2018!
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I posted a few months ago for my sister. Her scans had been NED, as far as we understand. Unfortunately, a few weeks ago she started experiencing some dizziness and double vision. A brain scan revealed she had numerous (but small, I think) tumors in the brain. Her PET scan last week showed that her body (neck down) is still clean. We are hopeful that the whole brain radiation treatment she just completed will eradicate all the tumors in her brain. Anyone here been NED after brain mets? Would love to hear some hopeful experiences!
Happy New Year - you are amazing women!
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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
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Good to hear from so many of you and cheers to all the good news that hopefully continues on in 2018. Five years, RosePenny, that's fabulous!
DizzyDee, I don't have experience with brain mets, but hope someone here can give you some comfort. Wishing your sister good luck on WBR results.
I'll have a CT on Tuesday with my fingers & toes crossed that Letrozole & Zometa are still doing their job, and I'll still be dancing here with NED!
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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!
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P.S., I am thrilled for all of you experiencing NED.
DizzyDee, I think there are many who have a good response to treatment of brain mets. There is a thread on the topic you may find helpful:
https://community.breastcancer.org/forum/8/topics/...
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