Primary endocrine resistance
hello. I was dx with stage IV de novo in July 2023. ER/PR+, Her2 - small Mets to pelvis
Treatment was Letrozole with Ribociclib. First scan after 4 months showed reduction. Second scan 3 months later showed bone mets reduced but small spots on liver. Told I was primary endocrine resistant. Moved on to capacetabine. On second cycle (14 days on, 7 off). Tolerating it really well.
Has anyone else been told they’re primary endo resistant? If so, what’s your treatment? How are you doing?
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@foxymoron, we're sorry to hear about your diagnosis, but glad you found us and decided to reach out to our members. We can't really help you with your question but hope someone in our community can offer experiences on this. In the meantime, if you do a search and type in "endocrine resistance" (without the quotes) as your search term, you'll see every time those words have been mentioned in a post, and can then check out the thread. See here How to use search on the discussion forums.
We hope this helps, and welcome again!
The Mods
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foxymoron, Have you had genomic testing yet? It can be very instructive to know if the resistance is due to ESR1, PI3KCA, or other mutations
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@foxymoron
I'm in a very similar situations.
Ribociclib and letrozole worked really well in my bones, but after 14 months i had a recurrence in liver.
I'm on Capecitabine since September and doing ok, hopefully scan and blood test will be ok too!
I have to say I would have prefer if they put me on Fulvestrant before or some other EI before going to Cape...
But as far as it goes i'm ok with it.
What does primary endo resistant mean and how did you find out?
Anyways best wishes! I hope is going to work for you for long time if you handle it well!
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hi amel 83. Primary endo resistance means the resistance to endocrine (hormone) therapy occurred within 6 months. All hormone therapy stops working eventually. This is secondary resistance. I’m one of the unlucky few for whom it never fully worked. I’m in UK and my case has been reviewed by an expert in this area, Prof Johnston at the Royal Marsden. Apparently it’s a new area of research.
cure-ious - yes my bloods are away to Germany to be tested for mutations. My oncologist says she wants to blast the liver lesions away immediately and the capecitabine should do this. When that drug stops working, anything suitable identified by the genetic testing will be my next line.My liver spots are too small to biopsy but if there’s any progression, it will be done
I feel fine but I am so worried that I’ve got some weird cancer that will resist all treatments.
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foxy, if the testing reveals an ESR1 mutation, you should be able to get back onto the endocrine therapy train… And if capecitabine stops working, try Celebrex, both are good AKT inhibitors..
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@cure-ious is Celebrex intended to be used with Capecitabine for fighting resistence? Or alone?
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Amel, I would not combine it with other AKT or MTOR inhibitors, lest there be some competition for substrates, however it is interesting that a recent colon cancer trial is combining it with a new MTOR drug. However, if someone had ESR1 and PI3KCA mutations and was just taking Elascestrant for the ESR1, then it might help to add Celebrex for the PI3KCA.
My cancer has both ESR1 and MTOR mutations, and I am doing well (for 8 months now) on Celebrex, Faslodex and Enobosarm (the latter is for the ESR1 mutation). As I mentioned, I have gone on and off Verzenio during that time, but it didn't affect the TMs (the cancer may be resistant now to Verzenio) and eventually it gave me liver enzyme problems, so I have dropped Verzenio completely. Last month my TMs dropped from 38 to 22, the lowest they have been in years, and the liver enzymes are dropping down, so this is the combo I will stick with till it stops working.
I should mention that I recently also added DIM/i3c, the broccoli extract. A paper in Science a few years back showed that DIM stabilizes the PTEN tumor suppressor, a kinase that normally suppresses the PI3KCA pathway, so I figured it should combine well with Celebrex to inhibit that pathway.
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thank you for the tips cure-ious. I’ll look into it. Should have my gene test results in six weeks.
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@cure-ious Thank you for the answer, and all the info. And I'm happy things are working and the numbers are dropping down!
I also thake some broccoli extract, sulphorafane, but for slowing down the insuline peack after eating, the brand is Broccomax. Not sure if it is effective or not, but a doctor suggested to me, and I'm trying it.
I will look in the DIM/i3c, seem interesting. I don't have any mutations at all but I like to be ready!
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