Stage IV NED crew : lets support each other
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Wonderful news twinklecat. I don't really have any advice on continuing treatment once NED, it's something I'm wrestling with at the moment myself. I do totally get the identity crisis, sometimes I feel like cancer is my life and I don't know how to move past it.
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Thank you to everyone who responded regarding scan frequency. I forgot to ask my MO when I saw her this morning, but will ask next time I see her.
Had a PET/CT on Wednesday, results today, and still NEAD!!!
Came across this 2018 article. It’s very specific in the population studied: de novo Her2+ (which I am). Super reassuring though as progression free survival and overall survival were both almost 100% at 10-years for those who achieved NED. http://theoncologist.alphamedpress.org/content/early/2018/08/23/theoncologist.2018-0213?related-urls=yes&legid=theoncologist;theoncologist.2018-0213v1
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Wow that's Amazing Mommy Erin. I'm not Her2+ but I did reach NED on first line of treatment which I know is also a good factor. I'm trying to live one day at a time and not think too far ahead, but I choose to be positive about it.. There are days I'm scared but I have to remember that I'm doing well and currently disease free ( I know others will say but stage 4 is forever, the scans can't see it but it's there). I choose not to look at it that way because I don't want to give it more power than it already had.
Currently doing rads and then an oopherectomy, and will switch to an AI. It's interesting how treatment regimes are different for everyone as I suspect that hormonals will be my only treatment unless something else pops up. Which I hope it never does again. But as we know with this beast, we just don't know what tmr will bring.
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That’s all very positive news re reaching NED and theArticle from MommyErin is interesting ..... what a big difference reaching NED seems to make. Those of you diagnosed de novo have my respect. It was hard enough dealing with primary cancer 11 years ago for me and then being re- diagnosed as stage IV last year. I was somehow prepared for it. Not sure if I would have coped with de novo news....we just do I suppose. One foot in front of the other. On the Ibrance thread there are several ladies in the scanxiety zone just now. That’ll be me in the next few weeks too. Hoping to stay here in NED land!
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I don’t visit often although I have made a great new friend who is also on this thread.
I popped on tonight and have read the links to NEAD and CR and long term survival and it has made me feel so happy. When I was diagnosed Stage 4 I thought that my life was virtually over, thankfully 3 years later, I am as healthy and as happy as I was pre diagnosis.
What a positive end to my working week, thank you for sharing them,and may we all remain on this uplifting thread for a very long time.
Have a wonderful weekend xxx
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Very good to hear from you Vevs
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Is anyone else on here triple negative? I've been NED since September and am currently on Xeloda (I guess just in hopes it will get any tiny nasties). I'm really struggling with the decision on whether to stay on chemo or not. I don't love the side effects but my anxiety is preventing me from stopping. I'm scared as soon as I stop it will rear it's ugly head again.
I haven't been able to find much research on it and my MO can't really give me a definitive answer on what she thinks I should do. I think she wants me to feel in control of my treatment but it's driving me bonkers. I'm going to ask for a referral for a second opinion next time I see her, I just want to make sure I'm doing everything I can. Just wondering if anyone on here is in the same boat.
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AllyBee - I'll share my story. I was strongly ER+ early stage, but my liver mets at time of stage 4 diagnosis were TNBC. I started GemCarbo and had a clear scan 2 months later. Followed by two more NED PET/CTs 3 and 6 months after that. We decided to go off chemo. 3 months later my scan showed the cancer was back and had spread to bones. I restarted GemCarbo and my most recent PET/CT showed no metabolic activity in the liver and much less in the bones. I hope I am on my way back to NED.
Along the way, as I made my decision, I was told that my NED "status" started after my second NED scan (3 months apart). The advice was then to continue with the treatment that was working for another 3 months, and if that scan was clear, then stop treatment. So essentially 6 months of being NED by scan (sounds like that is the point you are at).
For me, I found it reassuring that by stopping a treatment that was working, I could restart it should the cancer pop back up (which it did, and treatment is working again). Also, I find that I have stronger confidence now in my labs (15-3 and LFTs) as an indicator of cancer activity, which I find helpful. If you are able to track your cancer through bloodwork, that might be helpful to give you confidence in your ability to have a sense of what's happening off treatment and between scans.
Hope that helps. Good luck with your decision. And congrats on being NED!
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Thank you thrivingmama. Gem/Carbo was what got me to NED too. Yes, I'm about 6 months NED, I did a few extra rounds of gem/Carbo after my first NED scan and my MO said we could go back to it if we needed to. I wish there was some certainty but it seems like it's all a guessing game with metastatic breast cancer. My MO doesn't like to rely on blood work but I might question her about it again at my next appointment. Thank you for sharing your experience, I hope you get back to NED soon.
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Mommyerin: Interesting article. So hopeful for those of us HER2+. How long were you on Taxotere?
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Elderberry- I did 6 cycles of taxotere and carboplatin. My MO wanted to hit the cancer hard, and since I tolerated the chemo fairly well, I made it through all 6. My liver Mets we’re gone after the second infusion and my 3 month PET/CT (after my 4th or 5th infusion) showed NEAD
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AllyBee - have you looked at your tumor marker numbers (or LFTs) and charted them against your cancer story? my tumor marker has only twice been out of range, but when I graph it against my cancer story (scans, NED, treatments, etc.) I can see that the marker correlates to my disease burden. might be helpful to look at that to see if the numbers are reliable for you or not.
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thrivingmama,
When I first visited the site very few of the ladies received chemotherapy as a first line treatment. I was 8 years out from primary diagnosis and my oncologist believed in hitting it hard to lower the tumour burden. Most others seemed to start on hormonal or AI and kept the chemo for later.
Although, at the time, I hated it, I am beginning to think, from reading this thread, that his approach was the correct one and for that I am eternally grateful to my oncologist.
I am so glad that this thread is active and that there are so many others leading a full and happy life at NEAD
Elen xx
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Thrivingmama - I will definitely look at it, thank you for the suggestion. I'm assuming that even though my oncologist doesn't rely on them they would still be testing them.
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Vevs - I agree that reducing disease burden is an important factor in response. Glad that the chemo first route worked well for you!
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Vevs - I also had chemo as a first round. My oncologist believed in hitting it hard, too... 8 rounds of Taxol and added H&P halfway through - then continued with them every 3 weeks "or so". That was after 3 weeks of radiation to my entire spine. I thought I was going to die right then - I couldn't move for about 4 months. However, I've had almost 6 years of NED, so grateful that they seemed to have stopped the cancer in it's tracks for the time being.
For the most part, I have also felt totally "healthy" and happy, although always underlying anxiety (obviously. stupid thing to say)… especially leading up to scans. My last CT scan was clear and that was just a month ago. I elected not to have a bone scan (onc said it could wait another six months) and then OF COURSE about 2 weeks ago I started having this horrible pain in my lower back.... so now I am freaking out. Getting MRI tomorrow night - if it isn't cancer, it's definitely something else that needs to be dealt with! Ugh.
Hugs to everyone!
Andi
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Wishing you all the best Andi. An MRI is not a pleasant experience and you must feel elated by the clear scan, only to face a further check. This disease never lets up but you have done really well and already overcome many hurdles.
I’ll be thinking of you and sending positive vibes.
Liz x
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Sending positive vibrations as well. Hoping it's musculoskeletal, Andi.
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Andi
I will be thinking of you and crossing everything, whatever it is there will be a plan, hopefully muscular and some physio
Elen
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Yep Andi, joining in the thinking of you and as Vevs says, the PLAN
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thinking of you too andi!!
One thing that may be helpful to know, from personal experience...I had a neck MRI because of a lot of neck pain, and to get a green light to allow therapists to work on my neck...the MRI came back saying that I had innumerable active bone mets (yikes!!!!!). My MO called me and said: before we go crazy, let’s do another nuclear bone scan. While I was going a bit crazy anyway, turned out that the MRI picked up old mets that had healed. The bone scan proved that the mets were still stable and all was well.
Sooooo fable of the story is not to get freaked out (yeah right!) if your MRI comes back showing something. You may need to have another different type of scan to compare it to.
Hope this Doesn't happen to you, but just a word of caution from one who it has happened to.
Hugs!!!
Philly
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I haven't been back on the boards lately, so catching up as this thread has been active! Good to see you again, Vevs.
Andi, sounds like good advice from Philly, but hoping all went well for you on the MRI, and please let us know!
Thanks all for commiserating with me on my job loss. I did receive a severance package, but not as much as I would have liked. At this point though I think I'll sign since our well-pump decided to also crash and now I need the money. I would relish suing them, but even with severance I may still may be able to make an EEOC claim. A win wouldn't garner me any more money, but it'll be a mark on their record. Time to move on, collect unemployment, which I never have in my life, focus on my health, relax and enjoy the summer!
Yeah for all who have had recent good scans, and for those just beignning, yes, it's scary and rough right now, but do what you must and try to keep a positive outlook. There are so many of us thriving and you can, too! I'm closing in on 4 years NEAD this June.
Thanks MommyErin for the De Novo HER2+ article. I found it very encouraging since that was my dx. I also am so very grateful to my onco team for their aggressive tx recommendation to hit my cancer hard!
Hugs to you all and Happy Mother's Day to all the moms!
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Dear ladies, I dont write often but I am reading many so usefull information on this boards (thank you so much and I admire you a lot), I had one liver met in 2017 and one unclear lession in TH10. Since the resection of liver in november 2017 I was ned, the vertebra was stable (it lighted once on PET CT in 2017, than on mri it was stable for year and half, so they described it as may be enchodroma) only changing from tamoxifen to exemestan. But as from Pet CT from last month my lession in vertebra has metabolic activity again, liver is clear. I hope that since I have only one lession, it can be killed by some kind of radiotherapy and I can be ned again. I am also receiving anti-tumour vaccine, that was prepared in Dusseldorf in Germany. I hope it works at least for liver. I pray good results for all and thank you for your inspirational stories.
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Andi: you haven't posted about your last CT scan. Did it go okay?
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hey ladies.
Last two scans show NED , woohoo !
Just curious to how everyone is followed . My oncologist said every three months with blood work and CT. She did say we could do Petct but it’s not really standard for follow up.I definitely think the process for a pet is long and Cts are quicker but I was wondering what everyone else does. She said if the CT is concerning then a pet is ordered .
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Yay B-A-P. You and the other NEAD ladies give us all hope. I think I'll be getting scans/PET/CT or whatever every three months. That seems to be basic protocol. Seeing my MO this Thursday, chemo on Friday assuming blood work and such doesn't contraindicate it. Much as I dread it, I want chemo!
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Hi, B-A-P, congrats on those clear scans!
I get blood work every six weeks and I am monitored with PET-CT scans, partly because I had a PET-CT scan at the beginning so its a baseline and also because even my insurance company agrees that PET is preferable for bone-only metastasis.
I had first scan at the beginning of treatment, then another 4 months in to check the response, and then every six months after that. My doc doesn't believe in doing scans every three months, not when things are going pretty smoothly anyway. And, its a bit of a relief - every three months would be a bit too much anxiety for me, not to mention exposure to the radioactive material they inject you with.
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Maaaki, that's great that your liver is still NED! I like the idea of zapping (slang for radiating) that one bone met to get back to NED. Wow, a vaccine. Are you treated at a big cancer center, then?
Hi, Everyone. I am still presumed NEAD by tumor marker. We will scan if marker goes up or I have symptoms. (My markers have been shown to be accurate.) I feel so lucky, to be NEAD from liver mets and not even HER2+.
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Shetland, I am also NEAD with hx of widespread liver mets. Also HER-. Still on Ibrance/Letrozole after Adramycin/Cytoxan in 2016. I feel good for the body I have now with all those side effects of treatment.
Wishing NEAD for all my Breast cancer friends with mets.
I am surviving.
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interesting. I feel like I’d rather a pet only because the Ct scan I initially had didn’t pick up my Met at all which is why there was so much confusion as to what it was to begin with. But I suppose I have to trust that they will follow up appropriately if there’s anything concerning. I do blood work but as far as I see they don’t do Tumor markers. They did cbc and LFTs. I’m wondering if anyone here is being followed By ct
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