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:
● Oligometastatic at presentation (5 or fewer metastatic sites)
● Early, deep response to first-line therapy
● Achieved CR/NED
● Sustained ctDNA negativity
● No progression for years
I'm not there yet but hope to be.1 -
@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 life—at least for 3 weeks at a time! 😁Wishing everyone on this NED thread continued success.
Hugs, Pam 💗2 -
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 11… 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 - I’m definitely going to ride the no-Herceptin bus til the wheels fall off, if they ever do. 🤞🙏🏼
@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 hasn’t 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 Sandra’s 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. 🤗
Wish you and your wife many year of NED. Keep us posted on your Signatera decision.Hugs, Pam 💗
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