Stage IV NED crew : lets support each other
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Hi everyone! I just stumbled upon this thread and am excited to find it! I was originally diagnosed stage 3 in Dec. 2016 (ACT chemo, mastectomy, radiation, ibrance/faslodex/lupron) for my ER+ BC. In January 2018, much to our surprise and disappointment, we found 2 TNBC liver mets. I started Gemzar and Carboplatin in February and by April my PET/CT couldn't find cancer in my liver. I just had another scan this week and it to showed NED - wahoo!!
I am trying to figure out what to do now. Seems like the doctors want me to stay on GemCarbo for a while longer. But I am wondering if I should do a local liver treatment - SBRT, resection of the scar tissue, etc. Does anyone have any experience with local treatments after becoming NED from systemic treatment?
Any other thoughts on treatment plan going forward? Curious to learn from all of you. And so happy to find a group that can support each other while NED - so fabulous.
Thanks in advance!
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did you have a large liver tumor? I had an 11 cm tumor that shrank down to 3 cm. I had ablation to get rid of it even though they thought it was just scar tissue. If you are truly Ned, and nothing is showing on pet, it seems unneccesary to have any local treatments as there is nothing to remove or ablate
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Thanks Lauriesh. I had 2 mets - about 2 cm each. Nothing detectable on my last 2 PET/CTs.
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thrivingmama, awesome news!! How about a second opinion? I had my mastectomy and axillary lymph node dissection after I was NED and had a second opinion confirm this would be good to do. Sometimes things are not visible on imaging but micromets or dormant mets can still do harm later. Of course a liver resection or ablation is not the same as a mastectomy but for peace of mind it would be worth getting a second opinion.
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Hello ladies, I would like to join your club...I was afraid for a while. I had been diagnosed stage 1 in 2013, grade 3 IDC, node negative, mastectomy, 6XFEC, lupron and tamoxifen, since May 2017, 1 suspicious lession on liver, treatment changed from tamoxifen to exemestan. PETCT in May 2017, lession on liver fdg 6 and also one spot with uptake on 10 TH vertebra. Spot on vertebra stayed stable and lession on liver grew 0,5 cm in 4 monts. So in October 2017 I had liver resection, ovariectomy. The lesion was confirmed BC metastasis, low proliferation less than 10% ki67, since than I take only exemestan. I had some experimental imunoterapy with low dose nivolumab and hypertermia (wrote about is on liver board in February). I dont know what helped, I take also supplements (vit D, high dose iv vit C, silymarin) but up today I am still NED. I had MRI in March and PET CT at the end of June.
And as regards to thrivingmama I would also consult more doctors, may be the scar tissue resection would work...since I think I had the liver met at primary diagnosis. On pretreatment CT in 2013 (I did not have PET CT at that time) they reported small 2 mm lession on liver (similar area as was metastasis later found) and wrote may be small cyst...my notion is that chemoteraphy killed all grade 2-3 cells, but the sleeping cells stayed there and became resistant to tamoxifen, so it grow to this one lession...but this is only my theory. Good luck to all of you
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Hi Maaki,
Welcome, I’m interested in your theory, I had my mets biopsied from three different sites... cervical node, bone and cervix and all three came back with a ki-67 of either 2% or 3% this was pre chemo and pre tamoxifen/ Xgeva. I was, and still am symptom free. Diagnosis was incidental due to a frozen shoulder.
I have often wondered if I would have been better not knowing about being Stage 4 as I have a feeling that my breast cancer cells would possibly have remained dormant for may years without causing problems, co existing with me.
My fear is that I have upset the natural Apple cart now by trying to treat them instead of leaving well alone....any thoughts? Has the treatment awoken the dragon?
Elen
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hi Vevs great to know that you are symptom free... what sort of drug therapy are you on.?..with multi site mbc treatment can be different to one site like the liver.
For me i am symptom free with good lung function and have only a small tumor burden to my lungs which has reduced since starting letrozole in july 16
This weeks 10mth bone and 6mth ct scan show stable to lung and no new sites so very lucky to be still on a monotherapy
Al the best
Bright in hope
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When I was first diagnosed with MBC my oncologist decided to hit it hard with Epiribulin and Cycliohosphamide chemo that I found horrendous. After that I am just on Tamoxifen and Xgeva every 12 weeks. I am far sicker from the side effects of the treatment than I am from the cancer. Ignorance, in my case, was bliss!
Much love to you Bright
Elen xx
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Hello everyone, I'M BACK!! I'M BACK!! Since launching this thread way back in the day, I fell off the NED wagon with small volume mets to the peritoneum and a single bone met. I'm ER+ and HER2+. I've been on a cocktail of Kadcyla every three weeks for the past year, and injections every four weeks of Faslodex and Denusomab. I had a pet scan ten days ago and saw my oncologist yesterday...no sign of anything in the peritoneum and the bone met is sclerotic, no scan uptake at all! I asked her if I am now NEAD and she said yes, although aware that you still have cancer cells, but so tiny they are not showing up on scans and are responding to treatment. Keep on with the current regime until anything changes. Fingers crossed that day never comes. So I'm back on the thread and very happy to be here.
I have been a silent ghost watcher, reading other posters success stories and sharing their concerns and feeling happy that there is a place for NED women and men to hang out, but also feeling sad that I was bumped. But for now here I am, excited and celebrating my second time around in NEADland.
So, hello everyone. It's good to be back.
Boo xxx
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Yayyyyyy! Great news Boo x
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Boo123 May you be here so long you forget about us! Haha! 85 years old at least
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Boo,
Utterly fantastic news. I am so happy for you.
We’ve missed you!
Liz
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Great to have you back, Boo!
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Boo - that is wonderful! Congratulations and keep on inspiring!
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Cheers to you Boo!
I am hoping to be here soon!
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Welcome back Boo
super dooper news great to hear therapy is working
All the best
Bright in hope
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Boo, so wonderful to have you back! Congratulations on your geat news and returning to NEAD. May you and all of us continue here for a long time to come!
BTW, may I just also thank you for starting this thread? For me, it has been a really good source of information and a nice place for us NEADers to share experiences, so thank you!
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Hi everyone, thank you all for your good wishes. It's great to be back at NEAD, but I remain so mindful of the many others who are striving hard to get to join this thread. It was a huge decision for me to start the thread, but I am so glad that I went ahead and put it out there. Amongst all the news of treatments and different ways that we are all affected, it is great to have a place to hear how others got to NEAD and also to realise just how many women and men affected by stage Iv BC really do respond to treatment and can live their lives as normally as possible, given the treatment regimes they are subjected to. I'm still in thrall to my rigorous treatment plan, but that's all for my benefit so I am just thankful.
Everyone, please keep posting your NEAD stories, or even how you are getting close and need our support through those last few rounds of treatment...I hope that more and more of us end up on this thread and not on other threads...wouldn't that be wonderful?
Hugs all round, Boo xx
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Boo, I saw your triumphant post yesterday. It made my day! I’m not quite NED yet. I was diagnosed de novo with a small bone met to my femur and have one more round of AC to go. After 16 rounds of chemo I’m just about cooked. Next up, mastectomy and rads. As a newbie to all of this I wanted to thank you for making this thread as it has made way for hope. CONGRATS BOO
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Cfree123,
Wishing you all the best for NEAD after your treatment.
Please can any long term NEAD people update on how they are getting on too. All stories give hope and are a celebration.
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Jackboo09,
Hello from across the pond! I'm still NEAD after at least five years, give or take a few months from starting treatment seven years ago.
I'm crossing fingers and toes, and getting scans in mid-August. We're traveling to Greece in September!
Tina
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Hi girls, I'm coming up eight years NED and eighteen months no meds. I'm scheduled for a restage line of scans on Friday as my doc is afraid he's missing something........lol.......he's a bit of a fusser but I'll go along as I haven't had scans for a couple of years.
I'll let you know the results.
Love n hugs, Chrissy
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Tina
Thanks for your post. Great to hear you doing so well. Enjoy Greece. Whereabouts are you going? I love Kefalonia.
Chrisssy- a fantastic run and long may it continue. Wishing you all the best for scans which we all know are horrible.
L
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Liz,
We're going to Athens, Crete, Santorini and Rhodes.
Tina
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Fabulous Tina,
Have a wonderful trip.
Liz
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Thanks jackboo09! Last chemo tomorrow. Getting excited
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SCANday tomorrow! I’ve been so close, so now I’m crossing my fingers for NEAD. I’ll check back in in a couple of days with the results. I really really want to be in your club. Please take me! LOL
B. Sunset
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Keeping everything crossed for you ABeautifulSunset!
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ok... so good news! No new mets! Well, I’m not in your club yet, but all old mets are basically healed and inactive, except one that I had last PET at T1 is still there with a slight SUV uptake. I’m considering radiating that one, because the others I have radiated have responded really well. IF I can get that one in check, I can join your club.
Still.... it was a good scan day.
Beautiful Sunset
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ABeautifulSunset, glad to read of your good report.
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