Stage IV NED crew : lets support each other
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Met with my onco today who said that he's comfortable with stopping my treatment and keeping me under observation. I had COPD coming into this and there's an ILD risk with all of the HER2+ targeted treatments so there's really no way for me to remain on treatment without eventually succumbing to ILD. I'm just super grateful that I reached NED before having to stop treatment due to unacceptable toxicity. Regarding remission, having multiple negative scans plus consecutive negative ctDNA's is much more definitive for NED than negative scans alone.
@brutersmom It sounds like you had rCR (radiographic complete response) without a negative ctDNA (molecular remission). NED is increasingly being based on both tests being negative.
@livinglifenow Yes, there's so much research pointing in that direction now. No need to continue indefinite maintenance therapy after NED for a specific subset of patients.
Examples of the subset that could be considered for treatment deescalation:
โ Oligometastatic at presentation (5 or fewer metastatic sites)โฃโฃ
โ Early, deep response to first-line therapy โฃโฃ
โ Achieved CR/NEDโฃโฃ
โ Sustained ctDNA negativityโฃโฃ
โ No progression for yearsโฃโฃ
โฃ
I'm not there yet but hope to be.2 -
@chocomousse Thanks for the update on your oncology visit. I agree that NED on imaging AND negative on ctDNA tests seem to be quite telling for deep remission. I am anxious to see the results of the Free-HER trial and STOP-HER2 trials. That information will definitely inform my decision regarding ongoing treatment. Some results may be ready be the end of this year, some next year. Exciting stuff.
Right now I feel quite good on HP protocol and Tamoxifen. Side effects are minimal, so I have a lifeโat least for 3 weeks at a time! ๐Wishing everyone on this NED thread continued success.
Hugs, Pam ๐2 -
Chocomouse yes. My first 2 drs never felt the blood DNA was worth it. I switched facilities and they immediately did it. It was disappointing but the medss continue to work. I am over 3 years NED.m with minimal side effects.
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Dear all, @olma61 (she is posting on Herceptin and/or Perjeta thread) is on one of the trials, I believe on STOP-HER2. My wife has been NED for past 8 years after a dreadful start - liver full of mets. She had a relapse in her breast and LNs but all of that was fixed with surgeries, liver mets disappeared long long ago. Last week she had her 150 Phesgo infusion. Past 5 years were completely uneventful, scans all clear, ultrasounds clear. And even our MO now prescribes her several Phesgos which we get in the pharmacy and "store" in our fridge together with eggs and green peas (times have changed, eh?). I was also wondering if we should take the Signatera test? It is not compensated here yet but that is not a problem? Should I push for it as my Sandra is having and amazing QoL, doing everything any healthy human does? We are happy, as happy as we could be. Our boy, who was 2 at that time, now he's 11โฆ Your last posts got me intrigued though but I still wonder if we should "rock the boat"? Saulius
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I would feel very uncomfortable going off meds, but I'm HR+. The HER+ treatments seem to be astonishingly good these days, with those patients making up half the exceptional responders. I don't mind the meds. I'm almost 69 and everyone I know is on some kind of medication for some kind of condition and most of us have stopped drinking. Oh the pleasures of old age. Sigh. But, l'chaim!
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Hi everyone, yes I am on the study for stopping HER2+ targeted therapy. I agree with @tougholdcrow the HER2+ subtype seems to be the one with the best outcomes/prolonged responses to targeted therapies. As you can see from my signature, I discontinued targeted therapy about 18 months ago and have had all negative signatera tests since April 2024, even before I started the study. My scans have all been NED since 2019, after I had rads to my spine.
BUT, I am not off of all meds, the triple positive (ER+/PR+/HER2+) participants in these studies usually stay on the anti-estrogen therapy, so I still take Fareston, a SERM like tamoxifen. But for me, one pill a day that I can pick up at the pharmacy is preferable to going to the infusion center every 3 weeks indefinitely. Not to mention the additional risk of side effects the longer one stays on cancer drugs. Stopping PHESGO and switching from my AI to Fareston has reduced my side effects to almost nothing and my disease is still well-controlled so - Iโm definitely going to ride the no-Herceptin bus til the wheels fall off, if they ever do. ๐ค๐๐ผ
@bsandra - Saulius that is great that you get take-home PHESGO! I was hoping for that ever since I found out IV Herceptin had been developed but alas, it hasnโt come to be for us in the USA. If you can access the Signatera, in my opinion it is definitely worth doing to get more insight into Sandraโs NED status. In the study, we do the Signatera every 3 months in case of any changes we can resume treatment right away. As for scans I am now doing CT every 6 months instead of three.
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@bsandra Saulius, I am currently receiving PET/CTs every 4-5 months along with Signatera tests at the same time as the PETs and also in between PETs. So, Signatera about every 10 weeks right now. I have now had clear scans and negative Signatera results for a year. Hopefully I am on the same track as Olma1. ๐ค
Wish you and your wife many year of NED. Keep us posted on your Signatera decision.Hugs, Pam ๐
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So my pulmonologist doesn't think that the remaining scar tissue in my lower left lung is scar tissue and wants me to have PET scan. My oncologist, based on my 5/28 CT scan, thinks I'm still NED but says he will defer to the pulmonologist. My 6/8 CEA and CA27-29 are declining after the spike in April from the pneumonia. The chances of that scar tissue being a tumor are very low given my declining tumor marker tests. I think he just wants to use the PEF system on it, which he's brought up at previous appts.
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@chocomousse Curiousโฆ. It does sound like it is not cancer according to all of your markers, tests, and MO. Does the PEF system require any contrast dyes, etc? That would be my first question. Unless I absolutely need a test that requires more poisons to be put in my body, I donโt get them. If itโs a relatively tame test, then it would be another way to confirm what you already believe.
Keep us posted on your decision.
Hugs, Pam ๐1 -
Chocomouse. It is always challenging. I hope they figure it out.
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Have any of you been told to get a Brain MRI every 6-12 months "just in case" by your MO?
Before starting treatment 2 years ago, I asked my local MO if I should have a Brain MRI and she stated, "Only if you are having symptoms." At that time I also had an MO at a distant teaching hospital. She insisted I have a Brain MRI prior to seeing her before starting any treatment. I decided to get one at that time due to ongoing sinus headaches. Could they be tumors? That Brain MRI was fine.
A year later, after radiation to a small bone tumor and some soft tissue behind the bone met, my other MO (at the teaching hospital) again suggested I get a Brain MRI. I had just had a PET/CT that was NED and a negative Signatera test. Again I got the Brain MRI. All clear.
Now, for some reason, my local MO started suggesting I get a Brain MRI every 6-12 months "just in case." I personally see no reason to do so given my current NED status as well as the NCCN Breast Cancer Guidelines that
state: "Brain MRIs are only recommended in advanced breast cancer patients when neurologic symptoms are present" and "routine screening of asymptomatic stage IV breast cancer patients with brain MRIs is currently not recommended."Additionally, I have read through the entire sheet regarding the contrast dye that they administer with MRIs and major complications can occur with this dye. I don't feel it is in my best interests to have repeated Brain MRIs "just in case."
Can any of you share your Brain MRI experiences (reasons) and your MO's advice on getting them? Thank so much!
Hugs, Pam ๐
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Dear @livinglifenow , my wife Sandra had a few brain MRIs but only during local progression (which happened in the breast), so ,,just to make sure before deciding on treatment". While she's NED, she has never been asked/reminded to get the brain MRI. I think such practice is not in guidelines, so it is hard to understand why your MO is so "careful"โฆ Hugs, Saulius
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@bsandra Saulius, thank you so much for the information on Sandraโs treatment. My MO recommendation seems a bit aggressive given my NED status, and the fact that Iโve already have two clear brain MRIs. If my PET ever shows progression or my Signatera is positive, then a brain MRI would be in order.
Wishing you and Sandra well!
Hugs, Pam ๐1 -
@livinglifenow - I only had one brain MRI when I was initially diagnosed. Things were fairly advanced, so they did an initial check everywhere to look for possible metastases. I had none (diagnosis became stage 3), and they have never done another brain MRI, even as I became stage 4. My oncologist tends to be on the conservative side when it comes to running tests, etc., and I think that's a real positive in many ways. Of course there can be a downside to that too, but overall I've been happy with his more cautious approach ordering tests. I've even told him at times about headaches, and even "shooting pains" that I get in my head. At those times, I was "afraid" he'd want to do a brain MRI, but he didn't, and my problems always wound up revolving around low electrolytes and once those got back to normal my "head symptoms" would go away. You're in a difficult position and I think you are really smart to ask around, get 2nd opinions, etc. Please keep us posted. Wishing you all the best!
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@threetree Just FYI: the second time my MO brought up having a brain MRI every 6-12 months โjust in case,โ I told her โNo.โ I often feel really cruddy for 4-7 days after the contrast dyeโqueasy, achy, with headaches and rash. And, the dye and the metal fragments can stay in oneโs brain and bones for years. After I stated my reasons for avoiding Brain MRIs unless I have symptoms or progression, she said, โI take it thatโs a firm no.โ
I will not be bringing up that topic again. Just curious if she will, even with my โfirm no.โHoping this topic is one I donโt need to deal with again!
Hugs, Pam ๐0 -
@livinglifenow - Really glad that you seem to have made a decision that you are comfortable with. That is so important.
Now that I've said that, I did remember this morning about an article or study or something I read within the last few months, on this topic. Unfortunately, I just read it in passing and have no citation or formal info of any kind here. What it said though, was that a study had recently been done to see if people had brain mets, in spite of not having symptoms. Some number of stage 4 breast cancer patients without brain met symptoms were given brain MRI's and apparently a surprising number of them did actually show mets on the images, in spite of not having symtpoms. This prompted a discussion and talk of whether they should check "just in case", and I think it is a controversial topic among some oncologists. If I ever remember or come across that study again, I will post more info or a link or something.
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@threetree I have read that article. However, it was done on 101 breast cancer patients, none of which were NED. Also, none of them had ever had an MRI on their brains. If you already had a brain MRI, with negative results or positive results, you could not enroll in the trial. I do believe if someone has progression in their regular imaging or is positive on a Signatera test that would warrant getting a brain MRI. Symptoms or no symptoms. Of course, apparently, all these women were asymptomatic. But, as you know, we can have lots of symptoms that we might not think of as being related to our brain, yet they are.
Here is the link to the article. You may have to copy/paste it into the address bar to get it to work.
Https://academic.oup.com/neuro-oncology/article/27/6/1550/7978292Hugs, Pam ๐
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when I was first diagnosed I had no symptoms anywhere. The oncologist ordered a brain MRI anyway and lo and behold, multiple small mets. Iโm so glad he did that.
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@livinglifenow - Thanks for the link and the general info. I couldn't remember all the details, like the sample size, who was eligible to be in the study and not, etc. I will check out the link later this evening. I did find the overall issue and discussion interesting when I initially read it.
@aj - You are a good example of why the "just in case" argument isn't nothing. I don't think I realized you had had some brain mets. I might have read it in your signature before, and then forgot. I sure hope that is gone at best, and under good control otherwise.
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@aj I am so glad you had a brain MRI at the get-go and received treatment right away. I am glad I had my initial MRI when I was first diagnosed. That gave me peace of mind.
As @threetree stated, I hope your brain Mets are gone for good. Best wishes!
Hugs, Pam ๐1 -
the brain mets are under control but not gone. Thanks!
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Oh my goodness. I didn't realize this maybe is kind of a routine test for stage 4 girls. Saw my new MO yesterday. He said if I wanted the reassurance of being stable could have a BRAIN MRI. Stage 4 since 2017. Never had 1. Should I maybe?
He gave up on the PET scan for a 10 year old lung nodule that is now 10mm. He seemed to kinda forget that I finished treatment for tnbc stage 2 a year ago and focusing on stage 4 that's in remission. What a mess.
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I have sometimes wondered whether they should look at my brain, just in case. I have very mixed feelings about it. My mother died of a glioblastoma, so I may have more anxiety around the whole idea. I am HER2 very low, and I wonder if that might make me a bit more susceptible to brain mets. But I guess I'm happier to leave my brain a black box for now.
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So, I got my PET-CT scan results back and apparently, i'm actually not NED. For some reason, the initial adrenal gland tumor seen on my March 2025 PET CT scan is still present although it was not seen on my last 4 CT scans. Its presence is also bizarre given my 2 negative Signatera's and declining tumor markers. The good news is that no other areas lit up on the scan.
The persistent lung nodule was described as round atelectasis with an SUV of 1.5, down from 2.1 in Sept. 2025 so it's not what my pulmonologist thought it was.
The adrenal tumor size has remained about the same since March 2025 (1.1 x 1.6 cm) but the SUV has decreased from 13.3 to 10.7. So, since its small and the only hypermetabolic site I have, we're considering some type of ablation therapy, most likely SRS/SBRT, over restarting systemic therapy. Grateful for the non-toxic options.
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@chocomousse That is very interesting information regarding your scans. Glad that youโre considering local vs systemic treatment. I pray all goes well and you truly become NED soon!
Hugs, Pam ๐1 -
@livinglifenow Re the CT scans, I'm thinking that because they were taken primarily to monitor my lungs for ILD, all 4 of them were chest/upper abdominal scans that didn't catch enough of my lower abdomen to see that the adrenal tumor was still there.
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@chocomousse Glad you finally got the PET/CT. Itโs very interesting how each doctor monitors us in different ways.
I do believe that the numerous negative Signatera tests are still a very good sign! ๐Hugs, Pam ๐
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