Stage IV NED crew : lets support each other
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Divine MrsM: I like your quote: "I can only feel sorry for myself in small doses. Then, I must get on with life."
January 5yh scan. Lungs clear, T12 healed, remaining liver tumor "capsular retraction and calcification".. consistent with treated mets. NEAD.
Here I come 2018.
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Dizzydee,
http://www.mbcn.org/2016/09/29/eloise-ned-no-evidence-of-disease-since-2007/
This is a story of a young woman with brain mets who was NED since 2007 or 10 years!
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SandiBeach57, awesome news, and congratulations! A great start to 2018.
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Happy New Year! I’m thankful we’re all here to welcome a new year. I’m not sorry in the least to see 2017 go and am looking forward to a NED 2018 (fingers crossed!). I have a PET scheduled for Thursday so hoping and praying it’s clear!
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Hi Erin,
All the very best for a further NEAD result.
Liz x
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Hi again,
Forgot to update on trial. I was being considered for SBRT rads to solitary internal mammary lymph node. You need to be Oligometastatic to qualify.
Was told on Friday that it is a NO because the PET scan in November showed no evidence of a metastatic lesion.
Ideally I wanted this treatment. There are some small studies that report on aggressive local and systemic tx being the way forward for oligo patients, resulting in very long remissions. However they can’t/ won’t zap what they can’t see.
Grateful for my good tx response but disappointment not to have this further tx opportunity.
DivineMrsM -thank you for your inspiring post.
Liz x
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Hey, Nedsters! I think I can come back here now as my CA 27.29 tumor marker has been in normal range for five months now! Current plan is to scan only if TM rises or I have symptoms, as my TM has proven to be very reliable. It is so strange, almost all my ailments or discomforts have been drug side effects and not cancer itself. Even though I am presumably NEAD, I certainly don't feel normal as far as energy level, hfs, etc. So I am happy to be doing so well, yet I am so aware that NEAD does not mean normal. Do any of you have similar thoughts?
Jackboo, are you saying they cannot see cancer in that lymph node any more? So you currently have no evidence of disease? Can't ask for better than that. There was a breast tumor (different location from original) along with liver mets when I was diagnosed stage iv. My Taxol treatment killed the breast tumor, never to be seen again (it has been 3 1/2 years). Not on PET-CT, MRI, or ultrasound. When the ultrasound tech told the radiologist this, he just had to come take the wand and see for himself. I enjoyed his amazement.
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Hi all. I had my six month check last Tuesday and following scans have been given the thumbs up.........so, scans all clear and no meds either.....recheck in July. ......woohoo!!
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Hi Shetland, great news on your current situation, I'm with you on not feeling normal though!
The PET in November could not detect any metastatic activity on the mediastinum lso I am NEAD. I am very happy to report. Still get low at times though which I think could be the Letrozole partly at the moment.
Chrissy- beyond delighted for you.
Hi to all on here.
Are there any people out there 5 years plus on HP treatment?
Liz
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Liz, I know I read a study that showed Her2 positive NED/NEAD patients were more likely to remain so for a long time. I think it must be because the anti Her2 drugs are so effective.
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Great news Shetland, JackBoo and Chrissy; no meds, too, that's fabulous Chrissy! Congratulations to you all. I also got good news from my latest CT scan. Happy to report still NEAD. MO was scheduling CTs every three mos. for the last year to watch a lung nodule that suddenly appeared, but it hasn't changed at all, so she's finally satisfied that it's nothing, and is moving me to every 6 mos. I totally get the happy to be NEAD, but still do not feel my normal self. Joint aches and loss of stamina, feeling much older than I am and I'm certain is because of meds.
JackBoo, visit the H&P thread, if you haven't already. I know there are many women there who are more than 5 yrs. and even 10+ from dx.
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- Diagnoised Mets BC in August 2015 first scan March 2016 NED and again Jan. 2017 NED. I don't really know if I am cured or can stop worrying about it. All I know is I am in treatment Herceptin and Perjeta every 3 weeks.
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Hi Purdylucky
Thanks for your post. Great news. Reassuring to hear of so many doing well on HP.
L x
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Cheers to ShetlandPony, Chrissy, jackboo and purdylucky!
On HER2+ stories, I once heard of a metastatic bc patient who had been on Herceptin alone since it was first approved which meant she had survived about 15 years. On feeling normal, I feel like I'm normal for a 60 year old, 10 years after my diagnosis at 50 (mets de novo). I did feel like 90 at the start of treatment but I have been regenerating pretty consistently so I've gotten younger by 30 years! I would say though that I regenerated much less on AIs and much faster on Tamoxifen (low dose). I think it helps to take meds that reduce inflammation if there's any hint of inflammation going on. I take Aspirin or NSAIDs as well as antihistamines for aches and pains and allergies, respectively. Exercise and diet can also reduce inflammation. Oh, and Vitamin D also helps with aches and pains in the winter. I take about 30,000iu a week. I think it helps with my mood too but it could be psychological, like it's a replacement for the sun. Lol.
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Happy Day to All!
So nice to see a few of us staying on this thread! I just had my quarterly check-in and all seems to be well. Still on daily aromasin and quarterly zometa....Last PET in October was clean-three years from pretty much completing treatment. My onc. said we will back off the scans as long as all seems well otherwise. I had been going every six months. I feel great, and I'm training for a 10K in April Last week I ran 21 miles-slow, but still......I like Heidi's "age-math".....LOL!
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Great to hear from you, screech! 21 miles, wow! Sounds like you are ready for that 10K.
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I continue on the stable, no activity train. So very grateful to remain NEAD. Have been struggling with energy and depression lately but I’m digging my way out of it.
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hi everyone thankyou all for posting your continued positive mbc status
Im 20 months stable lung mets on letrozole
largest nodule has reduced 1/3 and having CT every 6 months
Minimal side effects
Its very hot so beach swimming and cool garden spa are my days relaxation
Glad to read the names of familar posters
Cheers
Bright in hope
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Bliss, Jensgotthis and Bright, awesome news!
I saw my MO 2 weeks ago and so far have not heard from him so hope it's as usual, no news is good news on tumor markers. He did ask about my weight again and he was very skeptical to hear I had not gained weight. I guess I can't lie about this with him. I had gained 3 to 4 kilos since I last saw him but was pretty close to my long-term postmenopausal weight. He has to learn to ask more precise questions. Really. Now to get with some program to lose my muffin top.
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I’m still on the NEAD train and approaching the one year anniversary of my diagnosis! My MO is talking about going to H&P treatments every 4 weeks instead of every 3 weeks in a couple months. I’m curious if those of you who have been on H or H&P long-term and remained NEAD are still getting infusions every 3 weeks or have moved to every 4 weeks? Thanks!
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Congrats MommyErin on the one year anniversary and riding the NEAD train!
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MommyErin I still receive H&P every 3 weeks. I really feel that I would be reluctant to move to every four. Maybe after 6 years NED. The reoccurrence rate is highest in the first 5 years for HER2
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Hi bstein
Not sure what you mean by recurrence rate highest in first 5 years for Her 2 for stage 4 folk?
L
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I mean after being NED. Not just stable but truly NED. Clear for 5 years. You will still need treatment but you might just now be in the lucky group of long term stage 4 survivors. I would welcome others to chime in. I would love to hear if this is actually true. For HER2 and others. Question is...after a long period of NED (not stable but nothing at all found) when did new areas develop while on treatment?
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Bstein, did you hear if this is true for hormone positive and hers 2 negative by chance? If you are 5 years NED than you are in a stronger position to possibly be a long term survivor- or did you just hear this about hers 2 positive? And where did you hear or read this from if I may ask?
Thanks!
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congratulations.
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I had heard of the recurrence rate highest the first 5 years for her2, but have never heard that applied to mets patients. I had asked my onc about the 5 year thing after I got to Ned and he said that didn’t apply to mets, that my risk of it coming back was just as high even if I make it to 10 years Ned. I went off of h & p after 4 years Ned and have been on no treatment for 3 years. Now Ned for 7 years. I stopped because the side effects were just getting too severe.
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Wow Lauriesh! Congratulations!!
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Yes, Lauriesh, Congratulations on 7 years NED!
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Wow 3years with no treatment! That’s so reassuring. I guess it’s only 1 year NED for me and 2 1/4 years since diagnoses. Taking it one day at a time
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