Stage IV NED crew : lets support each other
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Sandra's ultrasound on 18/01/2022 says NED, and full body CT on 09/02/2022 says NED, so... NED?:)
Saulius
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NED it is! Yay! Congratulations to you both.
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Thanks Bev, thank you so much! Saulius
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Congratulations to you and your wife!
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Yay, great news Saulius!
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Saulius, Great news! Congrats to you and your wife!
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Saulius -NED! Hurray!!
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Saulius - congratulations on Sandra's NED status! Woohoo! Fantastic news:)
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Congratulations! The best news!
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Congratulations, Saulius, to you and your wife!
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Saulius I am so thrilled for Sandra & you. I have just completed 5.5 years of being stable on I/L and am enjoying the moment cheers 🥂
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Thank you guys, you all are amazing. With all the stumble-overs we had and huge effort Sandra is still, after 54 months, on the first line maintenance treatment (HP), and I am sooo proud of her. As for me personally, I would have not made it without support, knowledge and kindness that I got and continue to get in these threads. Life is not easy (as Bruce Lee once said "Do not pray for an easy life. Pray for a strength to endure a difficult one") but every second of it is worth it. Hugs to everyone and let's continue marching on!
Your Saulius
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So happy for you Salius. Look at your beautiful Family! Thanks for sharing!
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Fantastic news, Saulius. I love that we can celebrate Sandra’s NED status. Thanks for posting. I need these positive reminders
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YAY, Sandra. The news we all want to hear.
A few weeks ago I had my first PET scan since dx almost 5 yrs ago. Usually CTs and bone scans.. Report reads:
No definite evidence for FDG avid recurrent or metastatic disease.
Stable sclerotic left humeral lesion without focal uptake.
Isn't this NEAD? Of course, with the stable lesion can't say NED. But with no focal uptake in bone lesion, I've heard its really just scar tissue. Yet the Dr insists that if we cut into it we'd find live cancer cells. OK, I get it. It's stable. Yes I'm satisfied with stable. He's thinking I expect to stop treating. I don't. He's crazy. Doesn't want to talk about it too much and jinx it. His way I think of cutting me off.
How would you interpret this?
With no active cancer, I still have my share of pain. It finally occurred to me it may be from the radiation. Does this sound reasonable?
Gailmary
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gailmary, I’m not a medical professional, but it sounds like NEAD to me! I wish you continued good reports, and I hope you can find some relief from the pain.
I have pain in my back that I think could be from the radiation. I took 2 Ibuprofen earlier this evening,and it hasn’t helped a bit. My October bone scan and CTs didn’t show any progression, but the report notes a sclerotic lesion on T11. With the frequent pain, I fear progression but I try not to dwell on it. I don’t want cancer to ruin the time I have left on my Herceptin holiday. More scans coming up next month, and I’m hoping to be NEAD again. Fingers crossed!
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Dear everyone, thank you!
Dear gailmary, lesions without the uptake might be dead, therefore you are NED for sure!:)
Saulius
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After all this time, I discovered this thread, because I believe I am NEAD. I've had the same mets to my lung and spine that I've had since 2008. Those little suckers are still there, but they're not getting any larger, or smaller.
I noticed in a earlier post someone mentioned "treatment laziness". Sounds like something I have had. I simply don't have the energy to do almost anything let alone cleaning. My one indulgence has been to hire someone to clean for me in my small condo. Every three weeks, my kitchen, bathroom and living area get a good scrub and mopping. I am so glad I have done this. I don't feel guilty that I can't clean my apartment, and I don't have any foolish spending habits, so that I can afford it so far.
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amontro. Welcome to the thread. I'm right there with you on cleaning. I pay to have my house and Windows cleaned. I also pay for someone to do the yardwork. I figure I can't take my money with me so I might as well enjoy it.
It's amazing how different the scans are. I used to get pet scans and they would always report no evidence of desease. Now that I'm on Medicare I have bone and ct scans. The report states my bone lesions are stable, so I guess I'm NEAD. Anyway, I'll take it.
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Amontro and Simone80- I agree with outsourcing house cleaning if one can afford it . We have a yard clean up done twice a year by landscaper but I am still keeping up the garden beds and husband or son mows. Makes my life easier to have the deep cleaning done by someone else (twice a month). Easier for my and my husband to keep things tidy this way .
Had my quarterly scan and still NEAD, grateful and relieved .
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Great news aprilgirl!
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Simone and aprilgirl, I’m celebrating NEAD with you. My recent bone scan and CTs report no new mets. I have a small nodule in my lung that remains unchanged and a T11 lesion that was killed with SBRT. I was worried that the T11 lesion was growing because I have daily pain in that area, but the pain is likely from the radiation and perhaps the scarring or callous that remains
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Congrats cyathea! Let's hope for many more years of nead!
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I don’t know how I missed reading this thread for so long. Continued good wishes to all. I have no complaints and remain fairly lazy in dealing with my bc. I do take melatonin nightly but started doing that decades before my dx. Being retired is a bit weird but I’m finding my new rhythm of life little by little. Take care
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Hi: I have finally been able to get on the threads. I kept getting just a blank white screen for days and days
I think I would want to tidy up and clean BEFORE I let in a house cleaner and that would defeat the whole purpose :-)
Saulius: Yay! I am so very happy for you and your beautiful wife and son. Sending you all cyber hugs. I kept wanting to be able to read posts after the Russians invaded Ukraine. My heart is breaking and I am filled with anger and helplessness. I pray for those poor people and all the nations bordering Ukraine.
.
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Cyathea, congratulations!
Exbrnxgrl, great to see your post, long term NEADster - enjoy your well earned retirement.
Elderberry - I do pick up prior to the cleaner, which drives my husband crazy! The Russian invasion of Ukraine is horrifying. I think of all the Ukranians who are displaced, lives disrupted and devastated. Cyberhugs to you and everyone.
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.....now if I can only get back to Mel's living room. I seem to get unable to open, or unable to post a reply with "Site Down" crap.
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Stable sclerotic = Bone is healing
Without focal uptake = No cancer.
Congrats!
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I am a year out now and the oncologist has gone to scans every 6 months instead of every 3 months I am comfortable with this as the oncologist is very cautious.
The issue I am having is with my lovely husband he seems to think this means I will get years before there is an issue, that could well happen but I try to explain to him that things could also change in an instant but he doesn't seem to get that has anyone had that issue with family.
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Sunnidays, I have somewhat of a similar situation and when my oncologist told me I had "years to live vs months to live" my husband took this as decades and I took it as 2-5 years. I have had 2 years "progression free" on Ibrance (actually, 2 years and 3 months but who is counting, haha). My oncologist is not overly optomistic and rarely is reassuring so I have no idea why my husband got this impression. For example, she is pleasant about NEAD status but makes sure we understand that there are most likely microscopic tumor cells undetected so we stay vigilant.
I had extensive met spread in distant lymph nodes so more than my profile line states and I have tried to update my profile but it won't save. Regardless, it was extensive and distant enough that my oncologist said in no way could it be considered ogliomets I don't see a lot of people on here with significant but only distant nodal spread so have asked her what stats I can use. Of course,she dislikes us reading stats as they are based on old info but told me my situation would be similar to overall survival stats of bone only mets.
I have accepted my husbands optimism as a positive, although when he talks about our "retirement plans in 5-10 years" I remind him I want to live now and not put off trips and plans. Overall Survival doesn't mean pain free survival as we all sadly know. We can't afford to retire if I do live longer than 5 years plus we need heathcare benefits from his job (I am 57 and he is 58). We also have 2 adult kids but our 22 year old has high functioning autism and is able to support himself but we are working on that.
Bottom line, I look to others such as Exbrnxgrl, and how long she has remained NED and think "why not me?!". Hopeful thinking but that's all I got for today! YOLO for sure.
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