Stage IV NED crew : lets support each other
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Kris,
Good to "see" you and read your great news!
Tina
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Wonderful news Kris
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Hi Kris
So so pleased for you. Hope you are beginning to feel better again after your treatment. Glad you are back to NEAD.
Liz
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Wow, so happy for you, Kris!
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Hello All, new to the community, but have been lurking for a while. Dx'd stage 4 in April 2018, 11 years after initial treatment and everything thrown at the cancer including surgery, chemo and 5 years tamoxifen. Devastated when recurrence with tumour on chest wall and Mets cells in pleura found. Same pathology, so was never really clear it seems. A few rogue cells is all it took.
Experiencing the highs and lows of this scary situation - As are you all! I'm in Scotland and well cared for by our NHS, although have private cover too which I used for last treatment. Might drop back into that later.
Still working full time in a full on job but getting great support ( which I expect after 30+ years service as a teacher and now at authority level). I see too many of you do not have that support. Appalling. Will retire soon though, I'm 54 and want to make the best of the time I have left however long that may be. My team says we keep going until we don't basically. No timescale or prognosis. Coping OK with the SE's but pretty tired!
Last scan in Dec (CT) showed NED after 6 months on Letrozole and Ibrance - only licenced here since Nov 2017. I'm incredibly grateful for all of your inspiring stories and hope.
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A question for all - Is NED the same a remission? I'm neither yet, but hoping.
Karen
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Karen, good question as the language is confusing in this world. My understanding is yes,NED is the same as remission or complete response. Does not mean cured, just that the cancer can't be seen on scans. Those who have reached NED have their own challenges and all of us hope.
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When your report says no evidence of disease. Yes, remission but we still have to “remember our mission” and never stop trying to be healthy whole and healed
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I’m staying with you ladies. NEAD, three years of stability and today I’ve been allowed to drop down from 3 monthly CT Scan and review to 6 monthly CT and review. I’m so happy.
Much love to you all
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So pleased for you. My results at 11.20am tomorrow
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I love when I see this thread back in action!
Not sure if I am exactly NED but I am “stable” and I’ll take it!
Spine is riddled with non active lesions (innumerable according to the last scans) however, I was told by my MO that I could be “the poster child for Ibrance.”
Whatever they tell me that is positive I’ll keep taking it and storing it deeply into my heart.
Congratulations to all the NED’ers who are scanning less frequently and living life well!!
❤️❤️❤️❤️🌈❤️❤️❤️❤️
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Great news, Vevs! Crossing my fingers, jackboo. We'll take it, too, Philly.
I am no longer getting regular scans. Hopefully this doesn't change on Monday when I see my onc for my 6-month check up.
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Good morning NED friends! I'm still in the "D" crowd, but hoping to add NE to that asap! Wondering if any of you have had surgery after reaching NED? My oncologist talked about the possibility of having a mastectomy once I reach NED, but then said that this is controversial among surgeons. I have read the big studies, but of course wondering if any of you guys chose this as an option? Is it a waste of time, surgery, stress on my body, and recovery or is it a chance at a longer life?
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love your news vevs! Looking forward to hearing the same fro jackaboo!
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kelQ - my MO always has said that surgeries making any difference are anecdotal and he doesn’t feel that it is a benefit.
He has stated very clearly that surgery is a definite NO unless the tumor is ulcerating through the skin, or is infected, or causing pain and decreasing QOL.
I had a pretty huge tumor and it is now gone thanks to the amazing medications alone. It’s amazing how when the meds work, they work! I am very lucky - not everyone has such great success.
Hoping that you DO have this kind of wonderful result from your treatments!
Love
Brenda
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Vevs and Jackboo, brilliant and hope results have gone well, respectively. Really appreciate you both posting as you’re UK based and we have slight different challenges to our Friends in the US/ Canada, who are just so brilliant at helping us make sense of the whole thing!
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KelQ
I know it’s not common, but I actually had a Mx two weeks ago. Chemo gave me a complete response , save for the 7mm nodethat was left , which they removed. Because I did so well, they are attempting curative intent . The tumour board all agreed that this was my best shot.
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Love From Philly - thanks for your response. I'm guessing that's how it will go for me, but just learning about the options in advance! Love reading your posts - you inspire me!
B-A-P, amazing! That is not very common but, of course, what everyone strives for. Wishing you continued health and a speedy recovery from your surgery!
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Vevs, great news to hear from you, and hoping we'll soon hear the same from Jackboo.
I'm sharing an article I read yesterday at work about a stress and BC metastasis study in Switzerland: https://bit.ly/2u8rJ7m.
Let's work to keep our stress levels down and enjoy the sunshine of coming spring, family, friends, travel and all the joys of life! Hugs.
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Thanks for this Bliss32. Not really a surprise that stress is a contributor, but good to see some research appearing. I have made the decision to stop work in the summer ( FT role which even my boss describes as high pressure shit shovelling!) I’m a health and well-being development officer for a local authority education dept and actually it’s pretty rewarding most of the time. But just getting too much nowand I need life to slow down a bit!
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Hi everyone,
I am pleased to report that my ct scan was clear and unchanged from Sept 2018. I delayed posting until the actual radiographers report came in as initially my onco was just going by sight! This means that I have hit the 2 year post stage 4 dx mark.
Was so hyped up on Thursday and am only now feeling the relief.
Karenfizedbo, I understand your decision about stepping down from work. I have decided to do the same while I am still well and although I am part time , ( English teacher) I have a full on role.
Big hugs to everyone. I am a bit out of touch with the thread so will have a read and catch up with everyone now.
Liz
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Kel,
I talked with my MO about getting a double mx and at first she said no absolutely not since I would need to e off of treatment for a while. At the time I only had 2 breast tumors and 1 brain tumor that was surgically removed. There were 3 tiny lung spots we were watching, but if those went away and it was just the breast tumor for a while she would approve me for the surgery! I’m not a candidate now as I have extensive cancer spread. Good luck and I hope things work out for you
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Great news Jackboo09! Aaaand breathe....
It’s a relatively easy decision for me to retire as I’m 54 and if I have 6 months off sick hopefully with no dramas, I will go at 55.... the age I always wanted to go at, if I could afford it, when I qualified as a PE teacher in 1986. Ill health retirement makes that possible....how ironic!
Different for you and must be a real dilemma.
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Congrats, Jackboo! And to BAP, too! Hope you heal quickly from the mastectomy, I had mine 11 years ago with the approval of a tumor board after a complete response with chemo. So I was in the same boat as you.
Bliss, thanks for the link. Based on that article, early retirement could be a good thing, Karen and jackboo.
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oh Heidi, you give me serious hope. We have some differences with our mets and hormone receptors , but your story from what I've seen so far , is what I strive to be at, and some things with us seem quite similar.
I'm too young (31 ) for this bullshit and have a 4 year old I want to be around for , for a very long time. I think rads are next but I'm not sure. I just know I have an appointment for a consult next month. But I suspect because it was all in my chest wall, that she's gonna wanna zap it.
Hoping for clear scans next month. My last one that showed a complete response was in December so I'm getting curious now. They keep calling me an exceptional case , and honestly , at this point , I'll take it
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oh and I’m healing fabulously from surgery. Left arm where they did the SLNB , has a little cording so extending my arm is a bit of a pain in the ass. But other than that , everything is healing great. I have to remind myself to take it easy. No complications
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BAP, I also had a young one (7 years) when I was diagnosed. She kept me distracted to say the least. Ask for a referral to a PT to improve your range of motion, especially if you are doing rads. I had a frozen shoulder (immovable) after surgery and it was fixed just before I started rads. BTW my PR was only slightly positive so more similar to yours than the "normal* case.
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This makes me feel even better
They told me I’m 100% Er positive and said nothing about Pr so I assume that it was negative or so weakly positive it wasn’t worth mentioning. I’m already at Physio . My surgeon made sure to send me for post mastectomy , so I’m already going once a week to deal with the cording. I do my exercises daily. I am lucky in that I am a kinesiologist and work in a Physio clinic myself ,so I do have background thankfully (and accessing to my coworkers whenever needed ) .
My husband doesn’t think I should do rads l. At this point my appointment is just a consult . If I know my rad onc well enough , she’s going to suggest it, and I honestly don’t know what the best option is. Seems like rads is the best option for oligometastatic , although the rads would be to my chest wall and probably auxilia. My Liver met was killed during chemo and in an inaccessible spot to ablate anyway
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Good news, JackBoo! And, glad to hear B-A-P is healing well from the mastectomies. I had a unilateral mastectomy, no recon, over 3 years ago now and did rads, too.
Karenfizedbo, good for you retiring. I sure wish I could; can't really do it yet financially. I still work full time, but my job is not that stressful and I enjoy the travel I get from it, but it would be nice to have time all to myself. Hugs everyone!
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Vevs- Congratulations! I've been NEAD for 19 months and still getting PET/CT every 3 months. Was wondering when others have gone to less frequent screenings.
KelQ- I had a bilateral mastectomy following chemo (and achieving NEAD). My MO considers me oligo metastatic and was comfortable going for "curative" intent. I too read the studies, but I am BRCA1+ and have an aunt with the same mutation who was diagnosed with a NEW breast cancer in her other breast a few years after her initial diagnosis and unilateral mastectomy (they wouldn't do bilateral at that time). I felt like with my family history it would just be a matter of time before I got a 2nd breast cancer if I didn't get the mastectomy, so that factored in as well. I got radiation following the mastectomy and feel content knowing I'd done everything I could to destroy the cancer. I chose to go flat, so my recovery was pretty quick. Reconstruction is a whole other ballgame though. My underarm where lymph nodes were taken and was radiated is still a little numb 19 months later (other side is normal) and I need to be on top of stretching and ease into strength training, but I am glad I chose surgery.
Liz- Fantastic news, my friend! So happy for you!!!
B-A-P- I feel you girl! I was 30 at diagnosis with a 4yo and 20-month-old. Hope your scans are clear next month!!! I had cording post surgery. Glad you're getting PT. I now do Pilates 2x/week for light strength training and stretching. It helps so much! I had extensive radiation. It sucked, but I'm glad I did it. Feel free to PM if you want to chat about any of it.
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