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The in-between life and death cancer
Cancer: Managing Symptoms | Last Active: 1 day ago | Replies (54)Comment receiving replies
@shellyk89: Along with @gingerw I am also going to extend a welcome here at Mayo Clinic Connect. And like you have relayed in your post, I also have a diagnosis of Stage 4 cancer; in my case it's metastatic melanoma for which treatment has been suspended -- at least for now -- due to a toxic response to the immunotherapy for which I'm undergoing another form of treatment in an attempt to reign in those adverse effects. So I can well understand how in your introduction to accompany your avatar you have indicated your interest in learning what has worked, what hasn't, some questions you wished you'd asked sooner. I'd like to hear more about that from your perspective: specifically, how long has it been since you've been diagnosed and what treatment have you or are you undergoing? What other support groups or forums are you involved in and what questions do you currently have?
I can share with you that one of the things that has worked for me has been shifting from the thought of "I have metastatic melanoma" to "I'm LIVING with metastatic melanoma" and to focus on the present. While I'm realistic in preparing for the possiblity of what the future may hold - and in doing so, compiling important memories, photos and thoughts in journaling for my family - I've integrated things I've learned into my daily life such as finding joy in the mundane, expressing gratitude and to view myself not just as a diagnosis, but a person still living a life. As an author I read stated, "regardless of age or diagnosis, we remain human forever." If we live with that attitude, as trying as it can be at times, I hope and feel that is how we will be remembered. Does that resonate at all with you?
Replies to "@shellyk89: Along with @gingerw I am also going to extend a welcome here at Mayo Clinic..."
@grammato3 may I ask where your metastatic melanoma is?
Mine is in my lung inoperable and have been on keytruda 5 years.
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@grammato3
Thank you for the welcome—and for sharing your story so openly. I’m sorry you’re in this place with metastatic melanoma, and especially that you’ve had to pause immunotherapy because of the toxicity. That kind of trade-off is its own grief, and I’m hoping the new approach helps calm the side effects so you get some relief.
Your shift from “I have” to “I’m living with” really resonates. I’ve been trying to do the same—less “I am stage 4 triple-negative breast cancer” and more “I’m a mom who happens to be living with this.” Like you said, we’re still whole people, not just diagnoses.
To your questions: I was diagnosed with stage 4 TNBC in March 2025 (about a year ago). The pathology confirmed the triple-negative profile—ER 0%, PR 0%, HER2 0+—with a high Ki-67 (up to 90%). The liver biopsy showed metastatic mammary carcinoma (CK7 strong, GATA3 strong; CK20/CDX2/TTF-1/Napsin A negative), and next-gen sequencing from the liver tissue showed BRCA1 promoter methylation. PD-L1 came back at 10%, so immunotherapy was on the table.
Treatment-wise: I started carboplatin + gemcitabine on 5/12/2025, and we added pembrolizumab (Keytruda) on 7/1/2025 because of that PD-L1 result. Scans after cycle 5 in August 2025 showed progression, so we stopped. I started sacituzumab govitecan (Trodelvy) on 9/16/2025, and the chemo knocked my counts down—I had chemo-induced neutropenia and had to get the white-cell booster shots to keep going. We got a great scan in December 2025 everything was shrinking big time. Then my most recent scan in **March 2026 showed progression again, now spreading to my neck and chest. Bone scan was clear, an the one liver lesion gone but then a new liver lesions different spot+ a mediastinal node are still in the mix along with the new areas.
For support, Mayo Clinic Connect is my main place right now. I’ve lurked in a few Facebook TNBC stage 4 groups but I’m not very active there; Connect feels kinder and less overwhelming. I finally asked my doctor for a therapist referral because up until now I’ve only been unloading into my notebooks—honestly, I’ve only been brave enough to take the mask off in my writing, and I think it’s time I had a space to say things out loud.
Questions I wish I’d asked sooner? What “stable” really means day-to-day, how to plan scans around family life without living scan-to-scan, and how to cope when a regimen has to stop because of side effects or progression without feeling like I failed. I also wish I’d asked earlier about supportive/palliative care as quality-of-life care, not “end-of-life” care. And I’m still figuring out how to talk to my kids in ways that are honest but not scary.
Like you, I’m trying to anchor in the present—finding joy in the mundane (pancakes on Saturday, the chaos of Lego on the floor), writing things down for my kids, and reminding myself that I’m still me. “We remain human forever” is exactly it. Thank you for putting that into words. I’d love to hear what helped you make that mental shift, if you’re willing to share.
Im also building a website/blog soon to be available. My brand GrayWings. That supports people in the in-between. Through writing and spreading awareness. 50 percent of donations go to any cancer facility of the buyers choice.