Anyone else had BC change from E+ to triple negative?

[PJBinMI]

I've never heard of anyone having this happen so I'm just wondering if anyone else has had it happen. I have lobular bc that was diagnosed at stage IV 20 years ago and have done well in treatment but have more side effects now and while my long survival got me way passed the initial fears, I feel so different now than I have since the first few years of this crazy cancer journey. I have neuropathy that's getting worse, and my digestion is very "off" since I had an intestinal blockage about 1 1/2 years ago. Had to have surgery to remove the valve between my stomach and small intestine and part of the intestine. Little appetite, can't eat normal size meals, and problematic BMs. Sigh. Have to use a walker. Have lost so much weight, I look like people who are starving.......

All that sounds awful when I read it and I am alot better than that emotionally but it's like I have entered a different phase of living with cancer! Maybe that's like having mets after having an earlier stage of bc. Guess I'm trying to make sense of what I'm going thru.

[MJ_Michigan38]

I’m so sorry you’re feeling worse, PJB. To answer your question about going from hormone positive to triple negative, I’ve heard it’s relatively common and I’ve known several women with MBC who’ve experienced this cancer type change. Hormone positive cancer is more likely to change than those who start out as triple negative or HER2+. As for me, I’m almost 5 years into my MBC diagnosis and my cancer is no longer progesterone positive but it is still estrogen positive, though that’s declined too.

[NPmary]

Hi PJB. I have benefitted by many a post written by you.I have heard of others changing to triple negative and other long termers (20 years!) talking about the many side effects that make life so hard and just wish the meds were better and didn't leave them like this. The ugly truth is we have a terminal disease; the cancer cells just want to survive they use everything at their disposal to do that including changing themselves and the cells around them. Who you are, your spark, your emotional self, your spirit, and amazing mental facilities will continue being you and carrying you.

This feels like a new phase in a long journey and that is probably what it is. Respect your body, talk to people you trust, talk to your doc about weight loss and the meaning of that for you. We love you and believe in you.

Mary

[Hopeful4Cure]

We can all understand how you are feeling. We all learn from people like you that have been on this train for 20 years and we all hope that we too will be able to fight to have more years. There are others that I have indeed had their dx change and and I hope that you will be able to read those posts. I was on 4 chemo treatments including oral over the last year and a half and asked and asked to be tested to make sure my dx had not changed. Dr. thought I was hormone resistant and did not use any combo's. I have been on everolimus and exemestane for the alst month and feel pretty good and gaining my strengh back. Still waiting on the ers1 test and others. The bone biopsy hurt but I am glad it was done. At least now your dr will be able to treat you accordingly. Have you tried ensure? It is important as you know to have a little meat on your bones. Hope others that have had their dx change to TN will reply to help you with your new hurdle. Blessings

[Charlie_99]

Hello. Good for you for what you overcome and persevered. I’m 8 years MBC with mets to lungs, then bone, and then liver mets showed up in 2022. Originally ER/PR+ HER2- back in 2016. In 2018 biopsied the lungs which already had changed to weakly ER+ PR neutral and HER- with mutations. But continued with various hormone meds with lots of side effects and little response. And then once the liver mets showed up and lung mets progressed, thus clearly hormone meds weren’t working, I too thought another biopsy made sense. I don’t understand this but is not common to do and was questioned by biopsy surgeon as to why I was doing another one, even though it had been five years and of the liver this time. But my oncologist was at least supportive and agreed to put in the req. And luckily he did, as I had become the opposite, ER/PR- and HER2+. So naturally started the HER2+ antibody med regime (Herceptin/Perjeta) which helped knock back the liver for a few months. Then had progression once again. My sense is that I was weakly HER2+ in liver but may no longer be the case now and lungs did not respond like the liver did to the antibody meds. My learnings are, cancer is often complex and different tumors can respond differently. It does try to survive and morphs to do just that, so keeping up with it is very important as otherwise we’re just wasting our time on meds that aren’t working while enduring the side effects. Hence you have to be your own advocate, trust your body and instincts, ask questions and ask for those biopsies and to check for mutations and markers. Quality of life is important in this journey and only you can determine where that balance is. You have already endured a lot, so I hear you as it is overwhelming and hard to keep up with. Not sure if you’ve been tested for the PD-L1 marker but have seen some pretty amazing results with those on Keytruda. Best of luck in this next phase and keep finding that inner strength and do what’s best for you.

[TammyCross in reply to Charlie_99]

Would the PD-L1 show up in a blood biopsy (e.g., FoundationOne)?

[Charlie_99 in reply to TammyCross]

Hello, sorry but no. PD-L1 has to be tested from an actual tumor biopsy.

[TammyCross in reply to Charlie_99]

Thanks for telling me. That is too bad. I don't think my tumors are accessible, and I would rather not have another biopsy. I had one at diagnosis, but I gather the point is to see whether the characteristics have changed.

[Charlie_99]

That’s unfortunate they’re not accessible. But maybe you don’t need to confirm the PD-L1 if you’re triple negative and can get access to Keytruda without the new biopsy. I have seen people respond really well to Keytruda who were in pretty poor condition prior to taking it.

Also they should have stored your original tissue so it’s possible they can test it but naturally a new biopsy would be best to characterize the cancer as it is currently. My experience has been you have to ask for certain markers to be tested.

You are an inspiration and wish you continued success in your journey.

[awesome4ever]

Hope you are doing well PJBinMi. I came across these two short videos on 2nd line and beyond options for treatment for TNBC. Just thought I'd include the links if you are interested. I know for most of us it is good to know that there are other options left. Take care.

curetoday.com/view/second-l...

curetoday.com/view/ascent-s...