Stage IV NED crew : lets support each other
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Hi Illimae, we set off about the same time on this journey didn’t we? I’m not so clued up on bone scans as my bone mets never show up on them. I am , however, an expert on rib pain. Particularly burning ribs pain and positional/ functional pain. I had convinced myself that it was from my widespread bone mets that pepper my ribs.
But no, it’s adhesions from my mastectomy scars and flares up if I lift heavy objects, hang clothes on lines etc So, I would lean towards another cause for your hot spot as almost every rib of mine has some sclerotic lesion but no pain at all from any of them.
Hope this helps,
Elen xx
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Could I be NED?
I was diagnosed as stage 4 de novo (HER2+, ER-/PR-) about 6 months ago.
After 6 treatments, my first CT scan showed about an 85% reduction in the primary tumor mass and healing on my bone mets. I also have a liver tumor that is down 85% to under 0.5 cm. My tumor markers went from 150 to the low to mid 20's. My bone pain is nearly gone and the breast mass feels back to normal.
My doctor seems to think I am either NED or knocking on the door.
If I am not NED now, what needs to happen? (or NEAD)
Could some of what was seen on the scan be scar tissue?
Have other people who got to NED had it happen in a similar way?
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As there is evidence of disease it would not be NED which stands for no evidence of disease.
I will leave others with more experience to respond on what happens after , my guess would be you continue on H&P ( I assume your treatment was taxane herceptine and pertuzumab) for foreseeable future. May be at some point dropping pertuzumab. If still all well in a few years you may make a decision on stopping herceptin as well but oncologist's standard line is " treatment for life"
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LA212 - bone mets can still show as "scar tissue" even if the cancer is not active there. I have PET scans, they show the metabolic activity of the lesions as well as their size. For me, thats how we know if they are "active" or not. My primary tumor is completely undetectable on the PET, I have had no surgery. It does sound like youre on the way to NED, so congratulations!
Are you still on chemo plus H&P or Herceptin alone? For me, I was "almost NED" after 4 months of Taxol + H&P and in 4 more months NED. Six months of Taxol altogether and yes H&P "forever"
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I am just on H&P now and have my next scan in a few months. Nice to here that I have a 'chance' at NED. I know that I will be on H&P forever but excited at the possibility for that type of response.
Thank you for the support!
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Just had my first CT only (no Pet this time) scan. I don't find out for 12 days, but cross your fingers that I'm still NED. I don't have any suspicions of anything new, but I also was asymptomatic in my liver. The Ct portion of previous PET scans never registered the Met in my liver so I'm a bit nervous about not following up with PETS. But anyway, fingers crossed!!
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crossing everything for you BAP xx
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my report said “unremarkable examination “ can’t get any better than that !
Seeing oncologist weds to find out what the next steps are 0 -
In our world being "unremarkable" is such a good thing! Congrats, B-A-P.
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Got the all clear last week on my recent scans. Next scans and MO visit in December. If all good once more, she says we'll move to 6 mo. scanning, but every time she says that something new crops up for her to follow, so crossing my fingers these next few months.
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Great news BAP. I’m on 6 monthly scans and my next one is 2nd September.
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pretty happy over here !
Yay Bliss ! Fingers crossed for you !
Usually they follow anyone stage 4 with scans every three months but I’m wondering if they’ll change that based on how well I’m doing. Not sure how I’d feel about spacing them out more , but I suppose the benefit is them not wanting to expose me to more radiation than I have. I suppose I’ll find out weds !
Fingers crossed for you jackboo
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Great news, BAP and Bliss
happy for you!I am doing six month scans, I actually prefer it this way. Less anxiety.
And yes, less radiation too.
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Thanks all. I started out on 3-month scans, then after two yrs. I requested 4-months to limit radiation exposure and expense! One additional month out seemed doable, but I'll admit two additional months out probably will make me a little anxious initially; I'll be happy for fewer appts. and pokes. MO said her reasoning was to lower my radiation exposure even more.
Fingers crossed for you Jackboo, and hugs to you all.
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BAP, Bliss brilliant news and Jackboo.... you know I’ve got everything crossed for you
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Shetlandpony and all you other beautiful ladies: I cannot believe I have barely looked at the boards let alone post since June 29. Two months! I saw my MO yesterday and my PET scan was absolutely clear. Nothing lit up. Nothing showing in my breast, no liver mets showing. I am officially NEAD. Doing the happy dance and hoping it stays that way for a long time. My DH fell apart with happiness.
I am just beginning to process it now.I was in a state of shocked disbelief. Good shock! I was hoping for Stable, No Progression --- I got NEAD. Okay -- so it is forever (we hope) or move on to another treatment or until a cure is found- that I will be on H&P. I can do that.
All you NEAD Ladies can join me in doing The Happy Dance.
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Brava, Elderberry! Happy for you!
Tina
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Awesome news, Elderberry, and doing that Happy Dance with you! Congratulations!
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Bliss, BAP & Elderberry- Huzzah!!
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Love it, Cure-ious! Thanks.
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Woohoo Elderberry!! Woot!!!!
Saw my MO on Weds and First thing she said was "Your cat scan was amazing!! Nothing to be seen " and said " Your liver looks great, your lungs look great, all of you is great " She said that we can do one more scan in 4 months and if all looks well then we can go to 6 months if I'm comfortable with it. She said it's different from the usual because I don't fit into the typical box of MBC , and she doesn't want to expose me to more radiation than I've had (this last year I've had 3 pet/cts, 2 CTs, and rads). So the next scan she said, will be a PET so that we can both feel secure that there isn't anything to be missed ( my liver met never registered on CTs ever so it's always a little scary to just rely on the CT alone) before switching to 6 month cts.
Current plan is just Letrozole . I asked about combining with Ibrance and she said she could argue for it and get it for me but she wouldn't know what she's treating. And god forbid if I take it now , have to come off because of SE's then I can never use it again when it's actually needed. She did throw in the fact I might need to be on it at some point, but also said " You may never need it". That, and I'd have to be on it indefinitely and deal with neutropenia. I asked her about the current studies about combing an AI with Ibrance and she said every woman in that study had some sort of measurable disease and women like me were excluded so she couldn't really apply those results to me. . I felt happy with this explanation. She said it's up to me completely, but again being in a situation as de novo oligometastatic with a complete response is not something she sees often ..I added all that incase others were looking for similar info
She says she's super optimistic which is great. It's also effing scary to be in a position where yes , stage 4, but being at a point where monitoring is less . It's like 2 scans instead of 4 , and what if those 2 months tacked on between scans is the deal breaker? but that's just anxiety speaking. It should really be viewed as something great and that they don't want to risk another cancer due to radiation. Oh my !
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congratulations!
Wishing you to get comfortable with less and less monitoring as more and more time passes by and remember to log in here like twice or once a year to post something to let newbies know one can survive it and clear it and be off treatment and live normal life:)
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Love hearing about all these great results! Hoping to join the celebration soon, next scan to be scheduled the end of Sept/beginning of October.
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anotherone,
I’ll still be here and will update when I have them
I’m still a newbie really. I’m only a year out ! Here’s to hoping for a lasting remission and healing for all.
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BAP. Brilliant for you and delighted you’ve shared with us
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BAP, what your MO has told you sounds very similar to what mine has told me. After next 4 mo. scan in Dec., if all is well for me, I'll move to 6 mos. too. I understand your anxiety about it; I feel the same. It's weird I feel like, yay!, fewer appts. and scans, less radiation, but then I'm nervous to be "cut loose" at the same time.
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Dear Elderberry, biggest congratulations on reaching NED, a very important milestone in healing! To others: congratulations on good scans. My wife and I hope very much that we'll be back joining you soon. Sincerely,
Saulius
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Bliss,
Right ? It’s such an interesting position to be in. It’s truly a positive thing when you think about it , but it’s the fear of missing something that clouds everything. It’s tough work to stay positive but I feel deep down it’s the way to live.
I’m glad your MO said something similar. It makes me feel great about my decision to take the AI alone. I know many are on ibrance that are Ned which made me feel confused at first and wondering if my dr was treating me as aggressively as possible. But I felt super comfy after our discussion so I suppose time will tell
For now I’ll live these next four months between scans as normal as possible
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