Stage IV NED crew : lets support each other
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Wooohooo, Tina!
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Here's my update: I'm back in active treatment starting today with Herceptin, Letrozole and Tykerb (new) at least for two months and then another PET. Was supposed to start last Thursday, but I've been fighting an awful cold, too; much better today. So far so good with Tykerb, but not sure how long it will be before any SEs set in with it. Have any of you taken it? They pretreated with Benadryl that made me very sleepy, so at least I got in a good nap! Hugs all.
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I could still be NEAD or not. But no change in treatment for now and I am fine with that.
1. Jan MRI of liver: several measureable enhanced areas during arterial phase of contrast, small nonmeasured lesion on right dome. Ultrasound bx ordered.
2. Jan Ultrasound showed nothing to biopsy. PETCT ordered.
3. Jan PET/CT showed one area lighting up in liver in a different area from MRI - correlating CT shows nothing. Possible treatment related, equivocal results.
4. labs and CA15.3 all good
MO said scans and radiologists are just messing with my head.
Went skiing (actually for me, it is called snowplowing). Outlasted my 6 year old grandson.
S
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SandiBeach, sounds like you've gotten some mixed confusing scan reports, too. My labs are good except all three antigen test results are up slightly over last month, so I just might have progressed after all; we'll see. Fun time skiing with your grandson and I'm impressed you outlasted him! I can't alpine ski anymore, but would like to give cross-country a try again.
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Aawww Bliss, what a bummer being back in active treatment, but still hoping you are with us in the NEAD club? Never heard of the new drug, which is a good thing I think, not knowing everything I mean
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Bliss,
Just wanted to hop in here to tell you that this almost exact thing happened to me at diagnosis.
So once it was determined that my lymph node was positive, I got a petct. It came back good ( Except for the breast and lymph nodes), with a teeny area in my liver lighting up. However the ct didn't register it. So they were like " wellllll it could be brown fat" * eye roll* SO they sent me for an MRI . Mri was inconclusive, showing a 5mm lesion in my caudate lobe. However, they were like " it's showing some characteristics of a met but some that suggest it isn't" SO they said Chemo was the " litmus test"
Had three rounds of chemo and then a follow up MRI. So in order for it to be deemed not a met, it had to stay the same size, shape, everything. Any deviation was an indication it was a met. So then I get the results and she said :"well now its less conspicuous " It was the same size but faded in the middle.
So they still didn't know. So she sent me for a PET after my 4th round. And what do ya know, it wasn't lighting up anymore. so they said " well that shows us it's a met because now it's not active anymore" Nothing was lighting up after that round of chemo except a 7mm node. So me being me, I accept this but not fully. I'm like "Ya'll never biopsied it so you don't 100% know"
So I'm with ya. Ambigious reports suck . I was left in limbo with my staging for 4-5 months. Either way, I had similar happen. Showed on MRI, PET but not CT . Couldn't be biopsied. It was all pretty foolish .
Here's to hoping for a good outcome for you.
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Hi Karen, I'm just not sure of my status, but I trust I'll be back to NEAD if the MBC has in fact reactivated, but we just don't know yet. I think Tykerb's (lapatinib) been around for some time, at least in the US. It's an oral chemo targeted to HER2+, so very minimal SEs and no hair loss; yay!!
B-A-P. Yup, your experience sounds very similar to mine. Ambiguous reports do suck! I guess in two months time we'll know more; hopefully! LOL.
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Hi All !
I’m Stage 4 NED ....how is everyone doing ?
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I am learning this site ...can you help me . I realize this thread is old however I am recently Stage 4 NED and wanted to join the club
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Hi Foxanne, welcome! Everyone posts updates to this thread whenever they want, so don’t be shy : ) I was NED on my last scan in October, I am not so patiently waiting for my next one which is due at the end of March.
I’m planning a big move, which will mean a new treatment center...as long as next scan is ok.
Still feeling fine except for some hormone therapy side effects, I stay active, and forget about damn cancer as much as possible.
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Welcome Foxanne, well done on your NED status. Celebrate that then settle in for the long haul.
Some threads are busier than others. The good thing about this one is that those of us who are NED are trying to just get on with our lives and we don’t post quite as regularly here. However when scan etc come up we support each other ..... it’ll be me in for a scan on Fri 13th of all days... Yikes!
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Hi, Foxanne. Karenfize is correct. Most of us check in only now and again, particularly after new scans. I, for one, had a CT and a bone scan last month and my doctor ordered my first PET-CT in many years to be sure that some things that appeared re-activated were not. I'll check in here after I learn what's up.
Fingers crossed!
Tina
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Thank you !
I was on the watch and wait for two stinking stressful years for my lung nodules. They grew very slow 5mm in two years so, like you we were not sure they were cancer . Well , they were . 3 small slow growing had VATS and Cryoablation and am now NED . My team thinks I will be around for years even if some comes back because it was so slow growing BUT the FEAR won’t leave me alone .
I have a 7 year old lil boy .
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Foxanne, I had a 7-year old girl, now she's 20 and studying medicine. Trust your team and let the fear go as much as you can.
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Welcome Foxanne! I had two boys - 11 and 13 and now they are 21 and 23! Like Heidi said, try to let go of the fear as much as you can. For me it totally comes and goes. I can go for a long time - months and months - and not even worry about it, and then other times I will go through weeks of anxiety for no real reason. ( I mean, other than the fact that I DO have cancer) This thread is a great source of support and celebration.
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Just checking into say my recent CT scan states ,”No evidence of metastatic disease
in the chest, abdomen or pelvis.” coming up 5 years de novo stage 4 disease. So hopeful and grateful to be here
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Brilliant Bstein! My results also still NED after Fri 13th scan! Having a 1 cycle break from Ibrance starting next week, just to give my immune system a breather what with the Virus. Huge relief re results as was very anxious about this one.
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Just checking in. Still NED after last scan at the end of March
All is well except for the upheaval that COVID is causing Grateful for the continued health and not having to visit the hospital much. Next follow up is via phone with Rad Onc.. Should be interesting considering he usually does a physical exam . But I'm doing well enough that I rather skip the exam for the sake of not entering the hospital.
Stay safe everyone
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Bstein, Karen and B-A-P, excellent news to hear! Bravo and congratulations.
I've been quiet lately since I still don't know what's up with me. The Tykerb, Letrozole, Herceptin tx didn't make any change according to 2nd PET that reported "stable." Still not sure if my liver's progressed or not, but maybe the characteristics have changed and I'm no longer triple positive. Having a biopsy 4/20 to find out for sure.
It's been warm and sunny lately and the snow's melting fast, but now it's supposed to turn cold and snowy tomorrow. Ugh! And so it goes...
Hugs to all, stay safe from Covid19, and Easter wishes to those who celebrate.
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Foxanne: Welcome!! I hop around on various boards but I always come back here to keep me encouraged. Last two PET scans showed me NEAD. I almost don't want to mention it for fear of jinxing it. The COVID-19 is another layer of anxiety for us to carry around. I am grateful not to be doing Taxol right now. Herceptin and Perjeta do not seem to affect my immune system as much. Staying put at home means I get down and finish artsy/crafty things that I usually procrastinate myself out of doing. I'm an introvert so it isn't hard to be home but I sure would like to have friends be able to come over and visit.
bstein: Yay on 5 years!
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bstein... 5 years, that is incredible! Wish one day we are there too... today my wife "celebrates" two years of NED in the liver. There was a relapse in the same breast in Jan 2019 but then she had chemo, mastectomy and radiation, and last 2 scans show all body NED again. I pray every day for this to continue. All the best for you beautiful people! Saulius
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Hi all
Just checking in to say that my March scan remained unchanged so still NEAD. 2 years of unchanged scans. Best wishes to all x
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Great news Jackboo! Bliss hope the biopsy goes as well as it can and results are in soon. I have had a few myself - they’re not a nice experience, but necessary.
Good to hear from others too, that we’re ticking along. Long may that continue!
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Hi everyone,
Lovely to see this board so active still.
I've been having a little break from BCO, a lot of things going. Back in October I posted that I wasn't NED any more after a met was found in my spinal fluid, which then led to discovering 2 tiny mets in my brain lining which we decided to treat with Gamma knife. While I was there for treatment they discovered 3 more mets and evidence leptomeningeal enhancement. I felt like every scan I did bought more bad news. I did whole brain radiation for the leptomeningeal mets and am happy to say my latest scans show NED. I know long term remission with leptomeningeal mets is virtually unheard of but I'm taking it as a win for now.
Ally
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Dear Ally, you are an inspiration! Only 5 months and you fixed such an "issue". Do you maybe have a chance to go for Atezolizumab or Sacituzumab Govitecan combos in the nearest future. Once I was very much interested in this trial: https://clinicaltrials.gov/ct2/show/NCT00195091?te.... I post it here, as it is not some "alternative therapy", but scientific hypothesis that they test. I think they started these trials as they had patients who were with leptomeningeal mets NED and did not relapse on this protocol for many years (even 6-8 and on-going as it is a Phase II trial). If you want, you can PM me, I have more info on this. Best greetings to all! Sandra's husband Saulius
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Hi Saulius,
Is that clinical trial for only those that are triple negative?
Edited: I corrected her2
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@hydeskate I so needed to read this post. I am so afraid being stage IV TNBC. I was diagnosed stage 3 in spring 2018 then found bone mets in feb 2020. I have a 5 year old and love reading all these positive posts. Today has been hard. I’m on chemo and immunotherapy and the major side effect is I’m just so tired. No pain. Thank goodness but I see such dim scary stats for TNBC. I pray this is working and I too can have many years with NEAD. I came here today to hopefully read some uplifting stories and it’s just what I needed. Cried a lot today. Thanks so a great thread all. I hope to be with you ladies soon
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thank you Saulius. The trial looks very interesting unfortunately I'm in Australia so I'm probably not able to participate.
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Congrats Elderberry, JackBoo and Saulius for Sandra on continued NEAD! Wonderful to always hear good news.
Karen, thanks for the encouragement. I think my MO was afraid I would cancel since people seem to be afraid to go to a hospital now, but I have a need to know, so onward!
Allybee, wow you've been going through quite a bit, but your news sounds like a win to me. Congrats to you.
dlittkemann, sorry to read you've had a hard time today. I hope you can get some good rest though I know it's tough anytime with a 5 yo, and especially during treatment, but no pain is a really good thing. Wishing you and all of us many, many years of NEAD. Hugs!
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@bliss58 thank you for the kind words. They helped a lot. Thank you xo
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