Stage IV NED crew : lets support each other
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One month later - finally have scan results to report. All clear! Thank you, Herceptin and Perjeta.
The radiologist mentioned my thyroid nodules again, said my thyroid looks bigger than it did last year. My MO is doing a thyroid panel. I saw an endocrinologist last year and had US of my thyroid, she was not concerned and wanted me back in six months - but then came the Covid lockdown. So, I’m not gonna worry too much, but might wind up at the endocrinologist once again
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Dear Olma, so great to hear these incredible news! My wife deals now with one small "suspicious" lymph node in axillia level II (6 mm, very small), few others very small in level III. 6 mm "thing" was just biopsied, waiting for results. Everything else is no sign of disease. First, of course, we hope biopsy comes negative, second, if it is positive, we want to go for local treatments and to give this disease no chance. Saulius
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Saulius, thank you, and here is hoping there is great news for you two as well! Sounds like a good plan you have in mind, in case it is needed.
In May, it will be two years since I had the local treatment to my spine which got me back on the NED train and hopefully if the local treatment is needed for your wife, that will be your experience too. Praying for good outcomes for us all <
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Olma, thank you. We are really very anxious and stressed now. We lost NED once (locally), now if it is second time (thanks God once again locally), it'd be so difficult... today we have a plan, and I hope this plan pans out (if the medical system cooperates well). Best news for sure would be... negative biopsy... Huuuuge congratulations to you once again - may this last forever. Saulius
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Oh, Saulius, I know how you feel. In Stage 4, we are always on a roller coaster and not the fun kind. Stay safe and stay strong.
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Hi all, I am posting, timidly, that I am thankful that my scans show NED or NEAD. My last 4 quarterly petscans have been NEAD and I am so very happy about this. I realize it can change rapidly.
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Good news, congratulations!
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Congrats April! I've been NED for almost 2 years so it can last a long time once you get there.
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Thanks for posting your good news, aprilgirl1. I’m hoping you get many, many more years of NEAD
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Thank
Simone, so happy you have been NED on Ibrance for 2 years. I hope to be on Ibrance/Fulvestrant for years as well. It has been easy for me to tolerate (now that I am on 75 mg my anc seems to be ok). 0 -
Hello NED crew. Hope you are all doing well. I have followed this thread over the past few years of treatment but don’t think I have posted here before. This might be a stupid question but when you’re NED, how low do tumor markers go? I’m curious if those of you who have had long term NEDness also see ups and downs in your tumor markers. Do you even have them tested regularly? I’ve only ever had the CA13-5 test and while it has generally trended upward when I’ve had progression and gone lower when treatment is working, it has never even been above the “normal” range. I’ve now been NED for almost two years but it continues to go up and down which is always disconcerting on the upswings. Is that typical? Just curious. Thanks. -Margarit
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Tumor markers have not really been indicative of the state of my cancer but my doctor still does the CA 27-29 every 2 or 3 months.
They were in normal range before I started treatment for MBC (at that time, I was getting CEA and CA 15-3 tested) and rarely has any test been more than a few points outside normal.
I was actually concerned before my last scan as the previous three tests were on an upward trend with the most recent CA 27-29 at 44 . But my scan was clear and my next TM test resul was 25.
That's probably not the most helpful reply other than confirming that my doctors have continued TM tests regardless of NED scan results Maybe someone else who is sensitive to TM testing can give more insight
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My tumor markers have also always been normal. My MO doesn't test for that very often. I hope someone else will chime in.
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Margarita, I have been NED for about two months. My CA 15-3 tumor markers have been 'sensitive' and seem to be a good indicator of how I'm doing. I know that's not the case for everyone. My highest was 879, my lowest was 37. My MO told me to expect my tumor markers to yo-yo up and down a little while I'm NED. Good to know, so I don't freak out over a one month change.
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Thanks for the responses, Olma, Simone and Seeq! It’s helpful to know what your experience is with TMs and your NED status.
I’ve been NED this time for almost 2 years but I’m sort of afraid to believe it will continue since I’ve reached NED several times over the previous years of treatment only to progress fairly soon thereafter. These two years are my longest run by far but I can’t help but wonder what happens next...
Are you still on the same treatments or do you stop treatments and just monitor for possible progression? Sorry if these are dumb questions
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Margarita, I am on my first line tx, so just trying to live, not worry too much and sort of take it as it comes - all while hoping I get a long run on this tx.
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Margarita, I am still on my first line also, almost 2 years NED. I only know of one woman on this site that took a break from treatments after reaching NED. I think she went a year and a half before her cancer progressed.
I've heard stories of other women who have been NED for many years and are off treatments. I like to think I can become one of those women some day.
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Dear Margarita, my wife's CA15.3 fluctuates between ~14 and 21 (which is still below threshold), CEA between 0.5 and 1.7 (well below threshold), we get them regularly as per NCI rules but so far I have not noticed any correlation with disease progressions (she had 2 local ones - one in the same breast in 2019, and one now months ago in axillar lymph nodes). Guess we are not lucky with that. In deed, I think markers really change if they are "sensitive" and if progression is significant enough. I cannot believe markers would change if there's sort of "in-situ" progression in some metastatic small tumor, like < 1 cm, as simply too little CA15.3 protein would be produced. Also CT/MRI could loose small metastases between the slices, although probability decreases with more CT/MRIs done every 3 months, so there's lot's of space for unseen, undetected progression, until tumors reach certain size and activity:/ I think one of the most reliable methods of disease detection is a thorough ultrasound. Both of my wife's progressions were found like this, when CTs and MRIs did not show absolutely anything (and lymph nodes were 2 to 6 mm - small). This is why we always alternate with the schedule: liver/inner organ MRI (month0), liver/inner organ and chest ultrasound (month1.5), liver/inner organ MRI (month3), liver/inner organ and chest ultrasound (month4.5), liver/inner organ MRI (month6) + liver/inner organ/chest/lung CT (month6), etc... This proved to be really robust scanning protocol for us. And ultrasound should be not expensive, and is not invasive, so adding it to the schedule should be okay, if you are really worried...
Saulius
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Hi Margarita - have not had a break in treatment yet. I am triple positive and been on Herceptin, Perjeta and Arimidex continuously since 5/18. The only change was stopping Taxol and starting Arimidex after the initial six months of treatment. 10/17 to 4/18.
There is no set protocol for taking people off Herceptin after long term NED status, even though some researchers and MOs believe there are some “cures" out there in the NED HER2 population. I do know people take treatment breaks or go off treatment entirely, bu it's decided on an individual basis. Due to lack of research , some doctors will be reluctant to giving their okay.
Personally, I won't think of stopping Herceptin or taking a long break unless I reach five years NED. Why five years? I don't know...just seems like a long enough time to get a little “experimental". Even then, I would want to stay on anti hormonals.
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Saulius, I think I read that you have some good news, I am so happy for both of you.
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Thank you Olma! Sandra had a surgery - lymph node removal. 5 were removed (largest just 6.5 mm), 3 were malignant. Surgery was not easy as these were level II/III lymph nodes in axilla. First they talked about additional chemo to HP to be more on "safe side", then radiation therapy, but in the end decided no to go for more aggressive approach, as it was just something local (all other scans were clear), as they believed - residual disease, that was pretty difficult to find even on ultrasound, so they removed it and let Sandra stay on Herceptin+Perjeta only, like before. So, at 45 months she's still on the 1st line treatment. I am very proud of her, and pray every day this treatment continues to work for a long long time... Saulius
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That's great news Saulius! 45 months on her first line is awesome.
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Hi, I hesitate to post in here because I have not yet heard directly from my doctor outside of a brief voicemail but my last PET scan shows that the lesions that were in my bones have completely healed! The voicemail I got from my doctor says that my scan was "completely negative" but she did not specifically say NED so I hesitate to believe it. I've read the report myself though and there is nothing there! I have so many questions! I see her on June 1 and have another call in today to clarify that this means I am really NED.
I really didn't think that I could go from stage 4 to NED. Those of you who are here, how long have you been stable? Did you stay on your same medication regimen? This just feels so unreal to me. I feel like I'm waiting for the other shoe to drop. I would love to hear your stories. I am in the process of reading back through this thread. Thanks.
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Emac, it sounds like great news! I don't blame you for wanting to hear the actual word NED or NEAD from your doctor, though.
I think you will hear many different kinds of stories in answer to your question.
As for me, I am currently NED...for the third time. It seems like for me, a treatment either works quickly and completely, or not at all. So Taxol, Xeloda, and Neratinib-Herceptin-Faslodex all took me to NEAD/NED right away, as in dramatic drop in TMs and first PET scan no uptake, lesions (dead or dormant) shrinking then disappearing on CT. After taxol I went on Ibrance + letrozole for maintenance, and was on it for two years until a scan showed progression (although during the second year TMs slowly rose). I got about two years NED on Xeloda. Current triple combo, thirteen months NED and counting. If the pattern holds I ought to get at least two years on this trial; hoping that the drugs being given to me for Her2-mutant will work long-term as they can for Her2-amplified. So I have seen a pattern as to how this particular cancer behaves. It has been a slowish yet relentless ILC, very responsive or not at all. The treatments that did not work, did it work at all: Faslodex + afinitor, Halaven, Doxil. Obviously these same treatments work for others. Each cancerhas its unique biology.
Anyway, now your task is to figure out how to enjoy this time of NED and not spend it watching for that other shoe! My cancer center therapist has helped me with that. Happy to elaborate if anyone wants to talk about that.
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Congratulations on this good news 🎉
About terminology- my oncologists have never said NED or no evidence of disease, and only one of the radiologists who have written my scan reports has used the term “no evidence of active disease". Usually the reports say “no hypermetabolic activity" was observed. That's on a PET-CT.
My onc will usually say “stable" “under control" “all clear" or something like that when we go over the report together.
I am still on my first line of treatment, 3.5 years so far.
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emac, Congrats on getting to NED. My MO has never said NED or NEAD either but I have seen it on the PET scan reports. I'm still on my first line and have been NED for 2 years. Enjoy yourself and try not to think of what might happen in the future.
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Emma, congratulations! I have been NED or NEAD since 6/29/20. I started first line tx 11/15/2019. It is challenging to "wait for the other shoe to drop" but I am trying to enjoy NOW (despite covid) and focus on today. I receive quarterly petscans and am due in early July. my oncologist is very happy although is cautious and reminds me that there are microscopic cancer cells circulating so enjoy the NEAD scans but we will stay on top of it.
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emac and olma: the report usually says stuff like NO FDG-avid. That is good news! Yes, MO's will say "all clear".. So, emac, be of good cheer. You are good to go!!
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About scan frequency - after the first 2 scans, MO said I could go to every six months, or even one year which I thought was too long. But I agreed to six months. I have been doing every six months, more or less, with exception being when I had radiation to spine met we waited a little less than 6 and then last year when the pandemic hit, we stretched it out to a nine month interval.
Now that I am two years continuously NED, I am tempted to scan once a year. At the very least, I am going to push my next scan off til after the Christmas holidays this year, which will be another nine or ten month interval.
Reducing the scan-xiety is one way of keeping my peace of mind. Might not work for everyone, but that's where my head is right now. It's a balance between “should we catch the progression at the earliest possible moment" or “what I don't know can't hurt me and maybe three extra months doesn't make that much difference".
I do believe there is some benefit to catching progression right away but I really want to enjoy my holidays without interrupting them for a scan this year so for right now, waiting 10-Ish monthswill be the plan.
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Scanxiety does deserve some attention. I think some other factors in scan frequency are where your mets are (for example, it might be safer to go longer with bone mets vs. liver mets), whether your TMs are reliable, and how quickly or slowly the cancer tends to move when it wakes up,
Regarding terminology, my onc usually uses the old-fashioned term "remission", but I do sometimes see the word NED in her written clinic notes.
Oh, and about your last question, emac. I stay on a treatment as long as it is working, so no stopping just because of NED. Well, with weekly taxol we planned four to six month-long cycles, and I did five, then we switched to I+L to maintain with fewer SE and better QOL.
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