r/LivingWithMBC • u/Kind_Consequence5331 • 2d ago
Metastatic and cancer-free 5y, considering stopping Phesgo
/r/breastcancer/comments/1n3t3ia/metastatic_and_cancerfree_5y_considering_stopping/6
u/New-Set-7371 2d ago
Hi not to completely discourage you as everyone has to do what’s right for them and also everyone’s body and cancer is unique. I was NED for 6 years and just got a met on treatment. All to say, that’s sort of the curse of MBC, is that it’s not really curable at this point and microscopic cancer cells that are malignant somehow always turn up. Definitely talk to your doctor and get a few opinions.
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u/Kind_Consequence5331 2d ago
Thank you for sharing your story — that is good to know too. I was really hoping I could stop after 5 years, but I know that 5 year mark of being “cancer free” that most other BC patients use doesn’t really apply to MBCers, although I was really hoping otherwise. :/
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u/SummerSTG4 2d ago edited 2d ago
hi! im also +++, just diagnosed a year ago. I was NED on scans after chemo, did surgery and had great pathology. I asked if there was a chance im cured. Not looking to stop treatment any time soon, but I just wanted to know what my Oncologist thought. He gave me the run around when I asked… i think it is all just really complicated, so you will never know 100% what the lay of the land is. I have heard of people at my center trialing coming off everything at 10 years out. I think you’re right that you won’t know and nobody wants to be the person to tell you to stop or to tell you to go on. 🫠 I agree the side effects are significant. I have constant GI issues, and it’s something im constantly managing. You aren’t crazy to consider this- I have wondered what I will do 5 or 10 years from now ETA: if im lucky enough to remain NED that long.
Sorry- wish I had a story that would tell you either way. id love to hear what you do. Maybe go in and tell them you’re hitting your limit on Phesgo side effects, and see where the conversation goes? if they suggest it isnt side effects from meds, I would tell them firmly but politely you know it is. See where the conversation goes also without that ”excuse”. There definitely are known side effects and i hate it when they don’t accept that! “I dont think that is from my treatment” is such an annoying phrase.
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u/Kind_Consequence5331 2d ago edited 2d ago
Thank you so much for your support! I’m going to follow your advice and ask my oncologist what my options are because I am at wit’s end now. The lack of data on outcomes right now makes this so hard. I’m going to ask my doc also about trialing coming off of it after 10 years (if not now). I’m sorry you’re experiencing GI issues too! At first I thought it was something I ate, but now it’s occurring like clockwork every few weeks. I hope yours goes away soon.
I’m beginning to wonder if like my original chemo regimen (TCHP), this Phesgo’s side effects compound over time. I messaged my doc so will wait until my next appointment to discuss more in person.
There was another patient I heard of 5y ago when I was first diagnosed — fellow MBCer Nalie Agustin interviewed her in a YouTube video — who was diagnosed with MBC, had a baby, never went back on treatment and had no recurrence in 20+ years. I was really hoping there would be more stories like hers by now, but she may have been one of the luckiest ever.
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u/SummerSTG4 2d ago
It is so hard to make these decisions because cancer/the human body is so individual 🥴 I guess it is hard for them to collect data about who is and isnt a good candidate for stopping treatment. I tell myself there will be more data on this in the years to come. And maybe you and I can be part of that story, whatever ends up happening. I’d love to hear what your Oncologist says. Just stand firm that the symptoms are from treatment, and you need it to be discussed with that acknowledged! Good luck ❤️
ps. I havent tried it yet, but I stumbled across a product called Banatrol. I am going to ask my Oncologist if I can use that, as if It works, it would make my life better! it’s something like pectin and a prebiotic that are meant to help with stomach issues from things like chemo, C-diff etc. Give it a look!
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u/Kind_Consequence5331 2d ago
I sure hope we can be part of that future study too. Thank you! I will report back here after I discuss with my oncologist or their physician assistant at my next appointment in two weeks. Banatrol sounds like it could be helpful. I’ll look into it as I’m currently on antibiotics, so could probably replenish the good bacteria my gut too. Thanks for the recommendation!
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u/Watercolornut 2d ago
There is a study on this. Not completed though. Wish you the best!
https://www.dana-farber.org/clinical-trials/22-655