Use of Signatera testing in stable disease
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@llivinglifenow ❤️
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@livinglifenow So the only treatment you're currently receiving is Herceptin?
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@chocomousse I am currently on Herceptin and Perjeta infusions that I get every 3 weeks. I am also on Tamoxifen. I just stopped exemestane since, over the past 8 months, I have been having lots of muscle aches and tightness and atrophy. It was debilitating to the point where I couldn’t sit at all, could only stand for a few minutes at a time, and could only walk for a few minutes at a time. I spent most of my time lying in bed the past two months as it got even worse. After being off exemestane for just 10 days I was almost back to normal. Shocking! Of course, not everyone has these side effects. I sure did though.
So, to answer your question: I am only on Herceptin, Perjeta, and Tamoxifen. I never had chemo, nor have I had any biophospinates.
I am working very hard to maintain a good quality of life. So far, except for the exemestane, I’ve been feeling great. Back to feeling really good again since stopping it.
Hope you are doing well and feeling fine!
Hugs, Pam 💗0 -
@livinglifenow
I landed in the hospital at the end of March with diffuse ground-glass opacities (GGO) in both lungs (pneumonitis) from the Enhertu. I also had actual pneumonia.
I see that you developed GGO from the Herceptin. Did your team stop the Herceptin while the GGO resolved or were you kept on it?
My team will be stopping the Enhertu/Perjeta and using a wait and see approach moving forward as I had a negative CT scan and a negative Signatera in January. My doctor says we'll test every 3 months and if the Signatera is positive, we'll consider intermittently treating with either Phesgo, Kadcyla or Margenza but those can cause GGO too. All trastuzumab based treatments now scare me as I also have COPD. He said that the TKI's are out of the question.
I had my 2nd Signatera on 4/10, still waiting on that result and really hoping that it's negative as my CEA and CA27-29 tumor markers went up. I think they spiked due to the inflammation/infection from the pneumonitis and pneumonia, which are known to cause false positives in tumor markers.
It seems that your Signatera is staying negative as you're still receiving treatment to suppress recurrence. Wondering how durable remission is in Stage IV people who stop treatment after reaching CR.
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@chocomousse So sorry to hear that you landed in the hospital! That is never fun.
To answer your question about my GGOs: they were not caused by the Herceptin. They were caused by an upper respiratory infection (URI) I had in October, followed by another virus (possibly COVID) in November. My PET scan at the end of October showed GGOs for the first time ever. My MO and I attributed it to my URI that I had a few weeks earlier. In early December (a few weeks after my November virus), I had a chest CT to check on the GGOs. They hadn't improved. My MO was certain that I had metastasis to my lungs. I was so distraught by her comments that I totally forgot that I had had the virus a few weeks earlier. Viruses can definitely cause GGOs. We decided to wait until my PET at the end of January to see where the GGOs were. I continued HP protocol every 3 weeks.
I did some research and found that pulmonologists often recommend NAC, 600mg 1-3 times/day, for GGOs and even COPD. Anyway, I decided to try it. I don't like capsules, but found I could empty the capsule into a small amount of apple sauce. I started off taking it three times each day until my PET the end of January. I don't know if the NAC helped or not, but the PET showed "ground-glass opacities seen on the previous examination have improved." There was no mention of any SUV uptake. I believe the NAC helped. When I saw my MO after the PET she said, "I guess your GGOs were from your virus, after all."
It sounds like you have excellent imaging and Signatera results. That is great news. And I believe you are correct about the CA 27.29 spiking due to inflammation from infection. My CA 27.29 often goes up slightly above normal whenever I get a bit of a cold, etc. Interestingly, my CA 15-3 has never done that.
I know that Enhertu includes a combination of Herceptin and a chemotherapy-type drug. Would switching to just Herceptin and Perjeta be better?? In looking at your signature it seems you are on a low lose of this stuff already. You may just be super sensitive, especially due to COPD.
There are currently 2 trials going on to determine if women who have been on HP protocol for at least 3 years and have been NED and negative on Signatera may stop the HP, test every few months with Signatera and PET scans and, if they remain NED and negative, no HP. If anything shows up on either test, restart HP. There is a gal @olma61 on here that is in one of the trials. She has been HP free for over a year now and doing great. There is some hope for all of us!
The trials are called "Free-HER" and "STOP-HER2."
Key Aspects of the Free-HER Trial and Access:
- Purpose: The study focuses on long-term survivors with metastatic HER2-positive breast cancer who have achieved a complete response (no detectable cancer).
- Goal: To determine if stopping Herceptin (trastuzumab) is safe when monitored by Signatera ctDNA to catch relapse early.
- Trial Information: You can find specific trial details on the NCI Clinical Trials Search page.
Key Details of the STOP-HER2 Trial
- Target Population: Patients with HER2-positive metastatic breast cancer (mBC) who have had an exceptional response (no disease progression for 3+ years) to anti-HER2 treatment.
- Trial Goal: To determine if stopping treatment for these patients is safe and if they remain free of progression for at least one year.
- Procedure: Eligible patients stop taking anti-HER2 therapy but continue regular check-ups (physical exam, blood tests, and imaging every 12 weeks) to monitor for recurrence.
- Trial Structure: The study includes a cohort that stops treatment and a cohort that continues treatment for comparison.
- Potential Benefits: Reduced toxicities, improved quality of life, and freedom from constant treatments.
- Re-treatment: If the cancer progresses after stopping, restarting the previous therapy is encouraged.
PS: I am considering switching HP treatment from every 3 weeks to every 4 weeks if I continue to be NED and negative by the end of this year. I figure 12 treatments a year vs. 18 is a huge reduction in toxicity. If I am still doing well at 3 years I may ask my doctor to put me on my own Free-HER trial. I am all about QoL (Quality of Life), not LoL (Length of Life).
Maybe you and I will be joining Olma61 soon. Wouldn't that be great! Have a wonderful day!
Hugs, Pam 💗
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Hi @livinglifenow
Thank you so much for this trial information! It's good to see that the wait and see approach for Stage IV'ers in remission is being seriously considered.
What is your average CA27-29? Mine is 29.1 and spiked to 66.3 this month.
To answer your question: "I know that Enhertu includes a combination of Herceptin and a chemotherapy-type drug. Would switching to just Herceptin and Perjeta be better?? In looking at your signature it seems you are on a low lose of this stuff already. You may just be super sensitive, especially due to COPD."
Yeah, Enhertu is trastuzumab plus deruxtecan which is the chemo payload that's released primarily into the tumor, limiting its systemic damage. My doctor suggested Phesgo which is injectable HP.
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@chocomousse Thanks for the detailed information on Enhertu. Hopefully a switch to Phesgo, when appropriate, will be much better for you.
To answer your question regarding my CA 27.29 numbers, I average around 29 as well. When I was sick a couple of times last year it got up to 39.5 and 42.2. When I’m not sick, it’s typically between 25 and 35 points.I hope and pray that your health improves soon. Do keep us posted.
Hugs, Pam 💗1 -
My 2nd Signatera is negative. Thank God. Praying for a durable remission. 😭
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@chocomousse That is so exciting! Congrats! 🎉🎈
Hugs, Pam 💗
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I get Signatera tests every 3 months, sometimes more frequently because they keep going up, my MO changes my treatment based on those results and other things, like I had a Guardant test that showed additional mutations and a liver biopsy that showed a new variant. Long story short, a little more than 2 years since my initial diagnosis, 16 months since I was diagnosed MBC and I’m on my 7th treatment
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@solomonwe01 Wow! Seventh line! I didn’t know there were that many. So glad the tests have helped with finding things early and having treatments available. Praying the latest one lasts a long time!
Hugs, Pam 💗0
