ESR1 mutation

[Ppppopp]

Hello everyone,

I have just had a guarant 360 test and seems I have an ESR1 mutation.

Can anyone tell me if they have had this?

Best wishes,

[GollyG]

Hi there,I haven't had that test as far as I know, but I do have the mutation. I was being considered for a trial for an oral SERD and a prerequisite was having that mutation. I got on the trial but received the placebo, which was my then standard of care.

All the best,

Gill

[Ph17 in reply to GollyG]

Hi Gill,

Thanks for your reply. I wonder how they know you have the mutation? My insurance paid for the test-thank goodness! It was a fortune!

Do you mind me asking what you are taking? I was on Ibrance/letrozole for almost 5 years! Just started faslodex, but have been offered a trial of a new drug. I would be guaranteed the drug not placebo.

[GollyG in reply to Ph17]

I suppose I must have had that test, just courtesy of the drug company, as having the mutation is what got me on to the trial. A trial with no risk of placebo sounds appealing! I'm now on Piqray and faslodex, just coming up to a year, which is fine now side effects have calmed down. Good luck x

[Ph17 in reply to GollyG]

that’s great! Cost £3000 for the test! You must have the other mutation too to take the piqray?

The trial has the main drug then you get another drug like ibrance. Otherwise I wouldn’t do it! That would be so stressful not knowing!🤦‍♀️ I have been on faslodex for six weeks and my back is killing me! I heard the piqray can be brutal?x

[GollyG in reply to Ph17]

It took some getting used to, certainly! I've been a year on t now, and sickness pretty much gone now. It causes high blood glucose but I'm finding diluted apple cider vinegar drunk (through a straw, to save teeth!) at mealtimes is really helping keep it under control. Keep us posted on the trial!

[Ph17 in reply to GollyG]

Oh That’s good! Will do!

[KMBL_]

The ESR1 mutation opens up Orserdu or also called Elacestrant for you. It’s a new drug approved by the FDA in January. I just started taking it three days ago, as I tested positive as well. The reason you get the mutation is usually from use of Letrozole or others in that family of drugs. I was on Letrozole for two years.

[Ph17 in reply to KMBL_]

oh right! I was on letrozole for 5 years!

Yes! That’s the drug I’m starting on the trial with something else. Not approved in the Uk yet!

Let me know how you are getting on with it!x

[KMBL_ in reply to Ph17]

I will keep you posted. I hope it works great for you.

[Ph17]

thanks ! Hope It works for you too!x

[Justme153]

I recently had a guardant 360 liquid biopsy. I also showed an esr1 and pik3 mutation. I was told they are common when you take the hormone blockers for long periods. I took arimadex for almost 2 years and then letrazole for almost 5 years. I find out this coming wednesday what med change they are planning???! A nurse in the office mentioned possibly PIQRAY and faslodex. Im not sure i will go for that. Quality of life is important to me. I feel great right now . I ride bikes and hike for miles no pain not out of breath no constapation or loose bowls. I havnt heard anything good about PIQRAY!!! Im thinking of waiting till i actually am being affected by these mutations where they start causing pain etc. before i agree to take that medication. That way if I feel misserable taking it I wont feel like I gave up any quality of life.

[Ph17]

Thanks for your message! It’s so very true about quality of life. I started faslodex 6 weeks ago and so far no side effects. I don’t have the pik3. Are you in the uk?

The elacastrant is approved in the us. The uk hasn’t approved it that’s why I’m doing the trial! To get my hands on it!

If you are in the us they will probably offer you that?

[NShaft]

I also have the mutation and have been on Orserdu since March. It is an easy med for me with few side effects. Currently it is only approved as a mono therapy so it will be interesting to see what you will be taking with it. Please keep us posted.

[Ph17 in reply to NShaft]

That’s so good to know!

Here is the part where it says what drug I could be given.

Alpelisib, everolimus, Palbociclib, abemaciclib, and ribociclib are approved medications use routine used to treat advanced breast cancer. Your study doctor will review this with you.

Although alpelisib, everolimus, palbociclib, abemaciclib, and ribociclib are approved for certain types of cancer, the combination of elacestrant with either alpelisib, everolimus, palbociclib, abemaciclib, or ribociclib is not approved by the EMA or MHRA; this is why each combination

I hope I don’t get Ibrance! I was already on that for 5 years!

Will def keep you posted!