Community Member
3 years agoI developed drug induced pneumonitis due to Verzenio. My oncologist took me off it immediately, so now, I’m only getting Fulvestrant injections once/month. I asked if I could go back on a lower dose (I was taking 150mg/ twice/day). They said NO. I’m currently only having the injections. What now? I’ve had genetic testing, and genomic (Guardant360), and I have no mutations. My initial diagnosis was: Stage 3C ILC (Grade2) with 20 nodes with macro metastasis. Er +/Pr+ Her2-. Now they mentioned I’m Her2 low; how does it change?
Accepted Answer
This sounds like a challenging situation, and it's completely understandable to have questions about next steps when treatment plans need to change. The shift from combination therapy to single-agent treatment can feel concerning, and having newly identified HER2-low status adds another layer of questions about potential options. These are excellent questions to discuss thoroughly with your oncology team - they can explain how the HER2-low designation might open up different treatment pathways and what the timeline might look like for considering other therapies. Many others in this community have navigated similar treatment changes and may have valuable insights to share about their experiences with various options.
3+ patients found this helpful
Community Member
6 months agoThank you, it does ♥️
Community Member
6 months agoThere’s data accumulating that maybe we should not do anything else but an AI or SERD, without the CDK. That way you don’t blow through treatments. Many are only on AI’s or SERDS. one personal friend was for 10 years. I’m hearing this often now. Perhaps your doctor has more data on that?
Community Member
6 months agoCan you share this data please? It would be nice to only take one drug that doesn't tank your wbc, rbc's and platelets. Thanks!
Community Member
6 months agoUnfortunately I don’t log all the studies I read. I will see if I can find it. I would agree with you, and a lot more Oncologists are staring to think this way as well. Some are against it however. We need to decide what is best for our own bodies and hopefully have an oncologist that listens. I’m lucky that I do.
Community Member
6 months agoWhat are you referring to when you say AI or SERDS?
Community Member
6 months agoAI are Aromatase inhibitors. They block estrogen in your body (very simplified.) SERD’s are estrogen receptor degrader. Like it says they kill the receptors on your cancer. They SERD drugs available right now are Faslodex and Orserdu. Orserdu, what I’m on, requires you have the ESR1 mutation to be prescribed. Faslodex is used on people with or without the ESR1 mutation. The ESR1 mutation makes the AI class of drugs (Letrozle is one) not effective.
Community Member
6 months agoThank you Valerie for sharing all of this information. Have you sent your medical record in? If you do, the clinical team will be happy to review your diagnosis and your treatments and see if there is something available. Please reach out to Ask Outcomes4Me to connect directly with one of our oncology nurse practitioners. Scroll down to the bottom of the app Home Screen and click the Ask Outcomes4Me button and your question will be routed to an NP. Thank you again for posting here.
Community Member
6 months agoMy journey through diagnosis and treatment is similar to yours except I am triple negative. I have had genetic analysis twice. I had genetic tests done 12 years ago for BRCA 1&2 and they were negative. 5 years ago I repeated genetic tests, as they had added 11 more genes that are related to breast cancer and again they were negative. 11 months ago I was diagnosed with advanced Stage IV metastatic adenocarcinoma. I am currently receiving ENHERTU infusion every 3 weeks. My MO explained that even though I am triple negative new studies are showing we have low her2. Nothing has changed except research evidence. I hope this helps explain.
Community Member
2 months agoThis sounds like a challenging situation, and it's completely understandable to have questions about next steps when treatment plans need to change. The shift from combination therapy to single-agent treatment can feel concerning, and having newly identified HER2-low status adds another layer of questions about potential options. These are excellent questions to discuss thoroughly with your oncology team - they can explain how the HER2-low designation might open up different treatment pathways and what the timeline might look like for considering other therapies. Many others in this community have navigated similar treatment changes and may have valuable insights to share about their experiences with various options.
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