I'm sorry for what I imagine is a stressful time for you...But I'm hopeful that there are other good treatments they can queue up for you...
I think Wintervt (and also maybe SunnyDrinking?), on this site, has the same (or similar) mutation. She is (they both are?) currently participating in a trial that is showing positive results. (If you need help finding her posts, either use search bar (upper right) and input "EMBER trial" or click on my profile pic (also upper right) and look at who I'm "following" - she's listed there...).
Oh...to your question re: what that % means re: the mutation...I don't know. I've heard about one other person's mutation report on this board and I think the percentage was higher than that...mid-single digits? I'll mention that I'm very eager to learn more about these tests and reports. I'm going to remain a bit skeptical until I learn more...i.e. If mine (results due this week) show that there's a treatment I should try, I'm on board. But I think that sometimes they indicate that a treatment *won't* work....I'd have to be really convinced of the accuracy of these tests before I'd forego some treatment option...the downside risk is too great.
Best wishes to you! Please let us know how you make out...
Best,
Lynn
• in reply to
Hi again, Jo -
I just received my report. I have PIK3 at 2.something % (I just read it and already forgot!). I know of one other person who had PIK3 at 4.something %. My report also showed two other things (ATM and something else (my god, where is my brain?!?) at 0.1 and 0.3%...so I'm gathering that these low %'s are still relevevant/possibly actionable? My only green check was next to PIK3, though....yellow squigglies next to the other two.
Not sure that info helps you at all...I'm hoping others who've gotten these test results weigh in -- I'm def trying to figure it out and don't meet with my doc until mid-Nov...
Thank you for all the information you have shared !
Yes i also understood that 1 % is a cut off point but i think possibly they will use the 0.4% that my showed up as . In my case no fda approved drugs apart from faslodex (which am on for 23 cycles already) and am guessing it has failed as i had progression.
I see your results are in the single digit and above 1 but also 2 other at way below 1.
I still have not figured out ..... oncologist did not really seem to understand the report - next week i have a virtual with dana faber, am hoping that they will shed some light.
Any info is always so helpful - thank you !
Will be interesting to hear your updates once you meet oncology mid nov.
One more question (sorry to pepper you! I'm trying to understand the report, too!). Did you report give you some indication of how Faslodex would work? I've heard elsewhere of people's reports saying, e.g. "Letrozole and Anastrozle won't work (red X)" but my report didn't provide any info on these traditional treatments...I'm thinking that maybe my doc gets the full report and my "preview" excludes that info?
I had a guardant 360’snd there were no mutations that were known or able to treat. It sounds like you have a few possibilities. I am now appealing the insurance deeming this test out of network when it’s the only company that does PIk3 test !
Hi ChrisVict - I'll mention that i just went through the process of an "out of network" denial but then the folks at Guardant got it sorted out for me so it was "free"! If you haven't already engaged them to work on your behalf, maybe give them a call?
They actually reached out to me offered financial assistance or Covid.
Not sure what financial would be based on and Covid was real since my
Salary has been cut do to Covid. The only problem was they could not take out the clause that said I would be responsible for what they could not write off. I have appealed to the insurance company only at this point
Because of EOB. My hospital is working in patient relations department. I did call Guardant again but was put a long hold. If I get a bill from them I will pursue appeal. I know when I got ONCO DX a few years back I filled out a form from company and they handled it all. I hope this is the end I do not receive a bill.
Just more complications. I really do think that it is unjust if that company is the only one that can do the test that the out of network status is just wrong.
Hi ChrisVict - Sorry for the hassles and stress re: sorting it out...Are you in the US? When I balked at the "self pay" to my doc, they offered a third option, Tempus (oh, btw, Foudnation One is just like Guardant, but it costs the same as...). They said Tempus is "just as good" and their process for financial assistance is looser...PM me for details. I did end up getting the Guardant through, hoping it works for you, too..
I’m sorry what is PM yes I’m in US. Oh it seems all this insurance stuff is a hassle I think I’m getting beyond the stress of it and realizing it’s a new normal pretty sad considering all we go through.
After almost 2 years on Letrozole and Ibrance I had slight progression to my bones. My oncologist in Vermont switched me to Faslodex. My scans were stable but my tumor markers continued to rise, so I decided to meet with my oncologist at Dana Farber and she suggested Guardant 360. I learned that I had the ESR1 mutation and that AIs and Faslodex would not work for me. I was not eligible for the trials that were suggested for this mutation (I was not post menopausal). Luckily, we found the EMBER phase 1 trial and I have had positive results.
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MRI Scans - changes in Mets
Faslodex/Ibrance ...last PET/CT scan
Changing to Xeloda 
Ibrance/Arimidex stopped working 😥
Liver, lung and spine mets
