ER+ Mutated no longer using Estrogen: ESR1 And PIK3CA Mutations

Posted by trivia @trivia, Jul 16, 2020

Hi, Has anyone heard of ER positive cancer mutating to the point where it does not use estrogen as a growth factor any longer but some other substance like oil or fat. There is a clinical trial currently being done where they are alternating inhibiting and dosing with Estrogen on mutated cancers. It seems these are cancers that’s still in a biopsy situation reveal ER positive characteristics but continue to grow without it.

@trivia, I did some poking around on the internet about this. This published research appears to be what you're referring to namely, some estrogen receptor positive (ER+) breast cancers may be resistant to endocrine therapy commonly used (and often successfully) for treatment. The research suggests "dysregulation of the estrogen receptor alpha gene (ESR1 ) contributes to therapeutic resistance and metastatic biology."

– ESR1 alterations and metastasis in estrogen receptor positive breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6519472/

Was it suggested that this may be the situation in your case?

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Hi Everyone, I'm Stage 4 Breast Cancer with mets in liver. The mets were radiated in August of 2020. I've had the standard chemo, mastectomy, lymph node ressection and radiation on the breast area in 2019.
I wondered if anyone who has the same mutations and if they are taking Faslodex alone? Doesn't ESRI 1 mutation mean that the Estrogen receptor has also mutated? My Oncologist hasn't seen any progression or new spots since the Radiation of the liver lesions, even though there is also the Pik3 mutation which is usually dosed with Picqray. I really don't want chemo if I can help it (which it seems like I am successful so far). So, just wondered about the ESRI 1 mutation mostly.

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@trivia

Hi Everyone, I'm Stage 4 Breast Cancer with mets in liver. The mets were radiated in August of 2020. I've had the standard chemo, mastectomy, lymph node ressection and radiation on the breast area in 2019.
I wondered if anyone who has the same mutations and if they are taking Faslodex alone? Doesn't ESRI 1 mutation mean that the Estrogen receptor has also mutated? My Oncologist hasn't seen any progression or new spots since the Radiation of the liver lesions, even though there is also the Pik3 mutation which is usually dosed with Picqray. I really don't want chemo if I can help it (which it seems like I am successful so far). So, just wondered about the ESRI 1 mutation mostly.

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Hi @trivia, I moved your recent post together with your earlier question about ESR1 mutation. I thought it might be helpful to keep the conversation together and hopefully find others with the same mutation. From what I've read studies are showing that fulvestrant (Faslodex) stimulates ESR1 protein degradation and is superior to aromatase inhibitors in ESR1-mutated ER+ tumors.

@dianamiracle and @ja5747 have also taken or are taking Faslodex. @rraw started this discussion and is also taking Faslodex
– HER2 positive & HER2 negative: I have both at the same time https://connect.mayoclinic.org/discussion/her2-positive-her2-negative/

Trivia, I can certainly understand your hesitation about chemo if you don't have progression at the moment. Does your oncologist suggest chemo to prevent progression or as a future option if progression is detected?

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@colleenyoung

Hi @trivia, I moved your recent post together with your earlier question about ESR1 mutation. I thought it might be helpful to keep the conversation together and hopefully find others with the same mutation. From what I've read studies are showing that fulvestrant (Faslodex) stimulates ESR1 protein degradation and is superior to aromatase inhibitors in ESR1-mutated ER+ tumors.

@dianamiracle and @ja5747 have also taken or are taking Faslodex. @rraw started this discussion and is also taking Faslodex
– HER2 positive & HER2 negative: I have both at the same time https://connect.mayoclinic.org/discussion/her2-positive-her2-negative/

Trivia, I can certainly understand your hesitation about chemo if you don't have progression at the moment. Does your oncologist suggest chemo to prevent progression or as a future option if progression is detected?

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Yes, my oncologist is ok with the Faslodex alone as long as there is no progression. He did recommend chemo (Xeloda) if it comes back or progresses.

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Qualifier statement: I am taking RSO, supplements, herbs and good nutritional meals as my part of the treatment as well as good sleep, exercise, keeping weight down (BMI=21) and meditation. All of it! That's my part at stopping progression. I never underestimate my part; its most likely more important than any drug or treatment my oncologist can give me now that I'm Stage 4.

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@colleenyoung

Hi @trivia, I moved your recent post together with your earlier question about ESR1 mutation. I thought it might be helpful to keep the conversation together and hopefully find others with the same mutation. From what I've read studies are showing that fulvestrant (Faslodex) stimulates ESR1 protein degradation and is superior to aromatase inhibitors in ESR1-mutated ER+ tumors.

@dianamiracle and @ja5747 have also taken or are taking Faslodex. @rraw started this discussion and is also taking Faslodex
– HER2 positive & HER2 negative: I have both at the same time https://connect.mayoclinic.org/discussion/her2-positive-her2-negative/

Trivia, I can certainly understand your hesitation about chemo if you don't have progression at the moment. Does your oncologist suggest chemo to prevent progression or as a future option if progression is detected?

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Hello All,
Yes I guess I did start this conversation about being HER2 positive and HER2 negative both at the same time . Yes I have the PIK3CA mutation as well. I am currently taking Faslodex and Herceptin for HER2 + it appears to be working in that the tumors we knew were HER2 + appear to be stable. The HER2- is a bit more stubborn. I have taken a number of things including Piqray and it’s been unsuccessful. We moved to Halavan in mid September. I get PET scan results back on Thursday to see how well it’s working. The CA15-3 (tumor marker) tests did show significant drops for a few months but the end of December started to slowly tick back up….. hence the new PET scan. Here’s another twist one of my tumors is Barc positive….. I am not….. but the tumor is. I am a walking mess but I feel just fine. I have about 2 days of exhaustion following the Halavan infusion but otherwise nothing much to speak of. My bloodwork indicates everything is functioning properly (kidneys, liver etc) My already thin hair has thinned a bit more since I started Halavan but I look good bald🤗😂Thanks for letting me share!

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