Does anyone have these mutations?I have the two and just discovered that my second line treatment (weekly Paxlitaxel)has failed after just 12 weeks.
I am waiting for the next plan but wanted to know what anyone else is following.
Need positive vibes...
I’m on Piqray but recently found out that I have two ERBB2 mutations. So I think my next line will be Enhertu. Did you already take Piqray? Normally Piqray is the second line for those with the Pic3ca mutation.
No, I started Paxlitaxel whilst waiting for my Guardent 360 results and went into complete remission in 10 weeks but now I have progression just 5 weeks after the clear scan
It’s great that you have two options waiting for you. Have you been on a CDK4-6 inhibitor?
Yes I was on Palbo first
Hi Tulipsweet,
I am a 78-years old Canadian with universal health care. I have both the mutations you have, but that has not altered the treatment I've been on for the last 20+ months as my cancer markers returned to the normal range after I started taking it. I take ribociclib (5 days on, two days off) and letrozole (daily). I find with the 5 days on schedule that my neutrophils stay close to the normal range. Although my oncologist would like me to try other specialized meds, I refuse to switch as long as my cancer markers and CT scans do not indicate major progression. I do not wish to mess with success.
I am now 78. I was 60 when diagnosed with early breast cancer which was treated with a lumpectomy, radiation, and five years of tamoxifen. I then forgot about cancer until my right arm swelled dramatically in 2019 when I was 74. A CT scan indicated that the cancer had metastasized to my bones, lymph nodes, lungs, spleen, skin, etc.
On my own initative, I took double the amount of tamoxifen my oncologist prescribed (40 mg. instead of 20) for the first year. This worked in containing any further growth, and my cancer markers went back to normal. Then, I foolishly told my oncologist what I was doing, and he refused to allow me to continue. On 20 mg. of tamoxifen, my cancer markers rose significantly in the following year. Fortunately, once I was switched to ribociclib, my cancer markers returned to the normal range, and no further growth has been obvious to date. I find the ribociclib saps my energy much more than tamoxifen ever did but at least my oncologist is willing to prescribe it.
I’m sorry to hear that your second line treatment has failed. You must be feeling pretty crap any way after that paclitaxel and very anxious. It might be worth asking your oncologist about any relevant trials and I’ve heard that sometimes palbo can reboot itself after a break or maybe a different one ie abemaciclib with a different hormone treatment. Until a decision is made about the next line of treatment that is effective and manageable, I hope you find something that will distract you, soothe you, and/or make you feel excited again.I’m curious as to how/where you found out you had mutations - when and how do they test? Keep us posted. Thinking of you and wishing you well.
Hi I found the mutations from the Guardant 360 test
Thank you.
Foundation One with a tissue sample versus blood, which only the pic3 mutation, showed I am ESR1.. CDK 4/6 doesn't work because these come with a estrogen inhibitor. Orserdu is my only option left except for IV chemo. Maybe one other oral ked. I also lost my HER receptors. 40%50 of women loss the HER within 3-5 yrs and 30-40% of women within 3- 5 yrs become endocrine immune. Knowing this I'm shocked it you'll 10 yrs to come up with Orserdu.
I have the piq3 mutation and was on Piqray for 14 months . I’m now on Enhertu with Fabulous results!
Good to hear as I am now starting Enhurtu on Thursday. Best of luck for you on your journey
Yes! I have the PIK3 mutation and was on Piqray for five months. There is a new drug coming out for the PIK3 mutation called Capatella (sp?), I heard it will be ready by the end of the year in the US.
Good luck to you,
Allison 😊
Capivacertib?
Yes! I’m so sorry, the STUDY is named Capitello-291 and the drug is Capivacertib.
Do you know if you need to have a mutation for capivacertib? From what I’ve read it seems that it might be good even if you don’t have them.
I was told you need to have the PIK3 mutation but I’m going to try and find the study online and see what it says. My Oncologist said she heard of it at ASCO but has not prescribed it yet. Another person told me it wouldn’t be available until December.
I was on Piqray for a year and a half. Was very sick and switched to Orserdu. No Fulvestrant. I am adding kisquali as my numbers are slowly rising. I am waiting for the insurance to approve it.
Wishing you the very best of outcomes, hope your next treatment keeps you progression free and feeling well. 🌺❤️🌺
Just saw your post--yes, I have both of those mutations. Was put on Piqray and it sent my normally well-controlled diabetic blood sugar soaring almost to 700--very, very scary.
Was immediately taken off it and, for a while I was doing really, really well on wonderful Enhertu...until it gave me ground glass opacities in my lungs.
So now I'm just on Xeloda and praying I can continue to handle the awful hand/foot syndrome side effect. It's ended my lifelong favorite exercise--taking long walks, so I'm beginning to get discouraged myself. But if I can help you with any other questions, please let me know.
Thank you! They decided today to put me on Enhurtu so let's see.Sorry to hear your news... keep smiling and positive x
metastatic Lobular
Metastatic secondary breast cancer to the skin
Updated Insider's Guide to Metastatic Breast Cancer
17 years metastatic and still going strong!
