Stage IV NED crew : lets support each other

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).

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!

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

Dear Olma, are results already in? Ehm... sorry to ask:) Saulius

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

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.

Dear Olma, huuuge congratulations!:) I felt something good was happening, so went to write and ask if the results were already in:)D

Saulius

Olma, congratuations on good results and continued NEAD!

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! 😊.

cowgal: Yipee! Happy dancing for you

Dear cowgirl - these are fabulous news! Congratulations! Every win by any of you is a big win for all of us.

Saulius:)

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!

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

saulius that is wonderful news. I hope that you and Sandra can now enjoy the summer. Xx

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 !