Stage IV NED crew : lets support each other
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Sunnidays,
My dh has been to almost every appt with me, so he's heard the same things I have, and yet...when I say something - e.g. both my parents lugged into their 80s, and I always thought I would, too - he'll say, "and you still could". Well, I suppose there's a remote possibility, but I was dx'd with visceral mets at 57 (too many and too large to be considered oligo), so the odd are...slim. We both take the approach of "I'm okay until I'm not okay," and I think he knows how quickly things could change for me, but doesn't want to really accept it. He does not make comments with a long time-line.
Anyway, that being said, he really does cater to what I want. And, we both retired and moved to a lake house closer to our kids, so we're making the most of our time now. I feel blessed to have reached NED so quickly, and for the meds to still be working (21 months).
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aprilgirl,
Why not you, indeed! I only wish we could figure out why I have done well. It is very frustrating to be a long term survivor without being able to know why. I really wish I could be part of the solution rather than someone who got lucky for unknown reasons. Take care.
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Hi all, just checking in to say this morning was my six month PET scan, at a different facility than I have used these past four years. Hoping that “new facility” doesnt mean “new findings”. OK, just being superstitious here!! Also hoping the report is available by Wednesday when I see my oncologist.
Glad to see the site is running a little bit faster , for me anyway. Still too much white background, I think. Take care, NED crew, hoping for clear scans and defying the odds for all of u!
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I hope you get good news Olma. This site seems faster to me also. I miss the old layout, all this white space is hard on the eyes.
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Dear Olma, knowing how strong and confident you feel physically and emotionally, having no signs to tell something otherwise, I am sure your scan will be good and we will have a small celebration (or a big one!) in this thread. Fingers crossed, and please tell us as soon as you know something. Big-Cyber-Hugs, Saulius
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Simone and Saulius, thank you so much for your support, it means a lot. No pet result yet but I had my echo and the cardiologist said excellent results!
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Dear Olma, are results already in? Ehm... sorry to ask:) Saulius
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yes I'm in the oncologist waiting room right now I will update soon
EDIT:Still NED! O Happy Day, praise God! Thanks again for your support0 -
Good news olma!
I know this may sound a bit crazy to some but an unexpected benefit, for me, of a decade of NEAD is that I am not being watched/monitored as closely as I was initially. I only see my mo every six months. Bloodwork is done every six months as well (my mo does not use tumor markers) and, assuming no symptoms, I only have scans annually. I admit that there were times, as the frequency of visits, blood work, and scans decreased that I became nervous that I wasn't being monitored closely enough. It was an adjustment in mind set but once I got through it, I was grateful. I know this would make many uncomfortable but I find myself far less stressed since I'm past the point where I need frequent monitoring. It won't change the course of my disease but it does feel good 😊. Still not considered cured by any medical professionals but I can deal with that.
Hoping you are all well too
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Thanks, Caryn. I hear you on the less frequent scans and visits. For me, anything that helps me feel less like a patient and more “normal” I am all for. And the other plus is that more time NED means I am not burning through all the available treatments too quickly! I am still on my first line and I am immensely grateful these drugs are working so well for me.
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exbrnxgirl- I completely understand the feeling of...normalcy (I was thinking "freedom") of stretching out MO visits, bloodwork, scans. OTOH, since I was basically asymptomatic with a huge tumor and lots of other smaller ones in my liver when I was dx'd, I don't see myself getting comfortable with 6 months between everything. I am happy enough with scanning every 6 months, but the bloodwork is my "warm blanket" in between scans. Seeing steady-ish TMs and LFTs is reassurance that things are probably going well enough. I can see stretching that to 3 months, but not likely any longer than that. With liver mets, there's too much at stake in a relatively short amount of time if/when current treatment fails, and no guarantee that my body will clue me in that there's a problem.
To make sure there's no misunderstanding - I love your contributions and I think it's wonderful that you have had such great luck with your treatment. I don't think I'd do anything different if I were in your shoes.
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seeq,
It took me quite a few years to be completely comfortable with lengthening the time between visits, blood work, scans, etc. but after 10 1/2 years of NEAD I am very content to be off the medical treadmill. However, I am equally happy to know that if I ever have any pain/symptoms my mo is quick to deal with it. That has happened a few times and turned out to be nothing related to bc but she was very responsive with appointments set up quickly.
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Dear Olma, huuuge congratulations!:) I felt something good was happening, so went to write and ask if the results were already in:)D
Saulius
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Woohoo Olma! So glad to hear your good news!
Caryn, that's great you only have scans once a year. I wish I could spread out my scans to once a year. My TM tests are worthless, they've always been normal.
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Olma, congratuations on good results and continued NEAD!
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Simone,
I want to emphasize that although I am quite happy now with scaled back monitoring, it took me a while and a lot of mental gymnastics to become comfortable with the idea. I am glad that my mo doesn’t do tumor markers as that would have been one more thing to fret over. The less is more approach fits my situation and, once I got used to it, my overall approach to life.
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I just met with my MO this morning to go over my recent CT and bone scans. MO says I'm still in remission and NEAD! 😊.
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yay congrats cowgal! Great news!
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cowgal: Yipee! Happy dancing for you
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cowgirl, yippee kyaye!! Fantastic news !
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Dear cowgirl - these are fabulous news! Congratulations! Every win by any of you is a big win for all of us.
Saulius:)
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Thank you everyone! I guess since I don't have my treatment information on my posts, I should include that I have been considered NEAD now since July 2020. I need to drop a note to the RO who did my radiation back in February through March 2020 and let her know. She said she never had a patient that cancer looked like mine (made her think I could be oligo) so she consulted her colleague who only had seen someone that was like mine once in his 25 years and told her how to do the radiation. So far it seems to be working but she wanted me to keep in touch because she wanted to see how I did and said that ROs don't really keep up with their patients because you usually have the radiation done and do not come back much if at all.
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Congratulations, Cowgal! In my April visits to my oncologists (one for BC, one for ovarian), each used the R word -- remission! To recap, I as diagnosed Stage 2 BC in 2011 and had no recurrence until July 2021. The MBC was caught during a CT scan as follow up to ovarian cancer treatment (diagnosed Stage 2 in February 2020.) I'm now cautiously optimistic and hope to continue NEAD for a good long time. Best to you all!
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Congratulations anntop! It is wonderful to be in remission but I think we would all agree that we worry about the shoe dropping again.
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Dear all, I just wanted to revive this thread with the news that my wife Sandra is still NED after last ultrasound (07 June) and full-body CT (30 May). Uhuuuuu!:) Hugs,
Saulius
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Great to hear, Saulius!
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saulius that is wonderful news. I hope that you and Sandra can now enjoy the summer. Xx
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Thank you guys, you are amazing!:) Saulius
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Hello all,
I’m just a few months shy of 12 progression free years at stage IV. Recently had a CT and nuclear bone scan and all appears well. Still not cured but I can’t argue with 12 relatively good years 😊 My emotional struggle has increased however because I feel like my clock is ticking down and the guilt I have is enormous. Let me say that I have always tended to feel guilty over things that I was not responsible for. Compared to so many of you, I am almost cavalier in how I deal with my bc although I realize I have the choice to be that way when most don’t. In some ways the whole situation remains surreal yet after 12 years it’s become my daily reality and I cope as well as I can. I often wonder when my bone met, which was an incidental finding on an unrelated scan, would have presented itself if it hadn’t been accidentally found. It was grade 1 so it could have been many years. Life sure is a trip !
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Saulius, great news !
Exbrnxgrl, I can understand how you feel . I am so happy for you that you are still Ned / NEAD . And I will tell you again what I have posted in previous years, you give me hope :)My scans are next month . Have been clear for almost 3 years and I'm hoping they are still clear on 7/11/23.
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