Everolimus, Anastrozole, & Metformin for ER+ PR+ HER2- PIK3CA EC/UC

Mercorby
Mercorby Member Posts: 111 Member
in Uterine/Endometrial Cancer #1

Anybody on this combo? What side effects are you having? This may be the next treatment for me.

I know that I am just a voice in the wind, but I figured I'd ask here for the fun of it. The answers of course will come when I talk to people with breast cancer who have my molecular profile. BTW about 30 to 40% of ec/uc patients have this molecular profile, but the doctors don't bother to test for it because they don't have easy access to these drugs. They are not part of the Standard of Care because there has been so little money put into ec/uc research that they are three to five years BEHIND breast cancer research.

After 7 years, Ibrance (a cdk 4/6 inhibitor) has become really toxic for me. My neutrophils just can't recover despite changing schedules and being on the lowest dose. I am having my fifth recurrence (we think). Having a biopsy in my vaginal cuff on Monday. Foundation One Liquid CDx showed no circulating tumors. The PET/CT lit up in that spot. MRI couldn't determine if it was scar tissue or a recurrence. Can't get surgery or radiation because it is too recent since I've had my last interstitial brachytherapy. Waiting for the Signatera test results. Waiting for additional testing on the lung nodule biopsy from last January (to see if any of the new adcs will work on it). For all I know, this could be a pimple. Infections light up on the PET/CT scans too. Hoping it's a pimple.

Been on this journey since 2015. I am educated on my cancer and know almost all the treatments and clinical trials for both breast and endometrial cancers with the same profile. There are a bunch of SERDs (estrogen degraders) that are available to breast cancer patients that are not available to us. So frustrating. I know if we choose one of those options, my dr could probably get one for me by doing a lot of extra work. But it's totally ridiculous.

Enhertu is tumor agnostic for people who HER2 + expressed in any of their tumors anywhere in their bodies. Yes, I know that is how it will eventually be with other drugs. But in the meantime, this is frustrating while being in a recurrence and wanting access to those meds.

Sorry this is so long. I am so tired of having to hang out with mbc forums to get a patient point of view on the drugs I need to take.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #2

    Mercoby, so sorry to hear everything you are having to go through and wish you could get some answers.

    So incredibly sad to me that the breast cancer world is so resistant to help other cancers. I have heard/seen/been personally told they are not interested and just gives me such a bad taste in my mouth. That is my personal thought there, and I have had breast cancer dx/deaths in my family, and I simply can't do the pink thing.

    Please keep us posted. You are helping others out here in the UC/EC world.

    NoTime

  • Mercorby
    Mercorby Member Posts: 111 Member
    #3

    Thank you, NoTimeFor Cancer. On December 9, on SHAREcancersupport.org/uterine there will be a really good webinar about the latest treatments for all ec/uc and for the first time, some frank information on the No Specific Molecular Profile (NSMP) category of ec/uc. I highly recommend everyone sign up. Full disclosure: Dr. Konecny is my doctor and a very good lecturer. I am hoping that we will be able to get some follow up pre-recorded webinars on NSMP ec/uc and starting a support group.

    Happy update: As my husband says "It was a scar trying to dress up as a tumor for Halloween." The biopsy - five samples, showed no cancer. The plan is to scan again in six weeks. Still waiting for the Signatera and the old biopsy tests to come back. See the dr tomorrow. I'm going to ask if I can stay on the Ibrance for another month while I wait for all my tests to come back and go through all my second opinions. I would like to not go up to the next level, Everolimus, and instead go to a SERD and Metformin for a while and see how that goes. My mutations from my lung nodule biopsy in January did show some changes, but maybe it's not too late to try my idea.

    I would like to go on Imlunestrant, which is a pill form of a SERD instead of Fulvestrant which is a shot in the tush muscles every three weeks. The problem: Imlunestrant is not available outside of a clinical trial which are closed now and my dr says it's difficult to get. I know that it could also be an insurance issue too. Hate to have to give up on that fight. The 2nd, 3rd, and 4th opinions are about whether it is too late to go the SERD and Metformin way. These are all doctors that are knowledgeable about hormone research and one is a breast cancer doctor.

    Knowledge is really the power to see and understand what your choices really are.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #4

    Dang, that is a Monday. Depending on the time, I might not be able to attend. It sounds good though. I'll have to check the time.

  • Mercorby
    Mercorby Member Posts: 111 Member
    #5

    Update: Signatera came back positive for molecular residual disease - but not a high number. The Foundation One blood test came back, but it was sort of inconclusive. The lung nodule samples from last January that were sent out yielded no results because there wasn't enough tissue there. So, couldn't identify some of the mutations the doctor was looking for. It's been up and down for me.

    I got called back from my mammogram to check one side. Mammogram and ultrasound. Normally, I wouldn't even think about it, but with mrd, who knows. Can't help but feel a bit skittish now. At least I am finally on the Everolimus, so hopefully that works. I get another Signatera test in 3 months to see how the Everolimus is working. I like the idea of doing that rather than a scan, if the mammogram turns out to be nothing.

    I'm wondering if having to hang out with a mbc forum to ask about my treatment issues is part of the problem for me. Can't be totally honest about being an EC patient there, so I feel a little funny about it. Yet, there don't seem to be any ec patients to share treatment notes with.

    Really need to swim more - maybe hang upside down in the pool. Gets me out of my head.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #6

    Mercorby, if you are looking for answers I don't see anything wrong with hanging out on the MBC site, I am just sorry they are not more inclusive. Sadly, you do have to be undercover, but we all have to do what we have to do.

    Never apologize for looking out for your best interest.

  • Mercorby
    Mercorby Member Posts: 111 Member
    #7
    https://csn.cancer.org/discussion/comment/1718940#Comment_1718940

    Thank you, NoTimeForCancer. Feeling much better today. Had a 2nd opinion visit with my favorite researcher via telehealth on the other side of the country. Ok, that's definitely nerdy, but true. My husband said it sounded like we were chirping together in a language he didn't understand.🤣 This dr agreed with my current regimen and said mostly things that I knew (because, of course, I've read ALL of the research in bc and ec), but also told me some things thatI didn't know, but I understood. One of the things that I like about him is that he is really up on bc research too. All in all, it was a great meeting.

    Next week, I will meet with another researcher that I admire, and after Thanksgiving, I meet with the breast cancer doctor that I spoke with last March. I know all three of these doctors are knowledgeable and mostly agree with my doctor about this hormonal journey path. But I'm picking up bits of knowledge from each of them and if any of them recommend something like chemo or immunotherapy now, I would consider it. However, I think they all think this way is the best for me, but won't rule out the other treatments in the future. Very different from all of the gyn oncs I've met. My doctor knows all of them and thought it was a good idea to see if any of them could get one of the drugs I am interested in sooner than he can. So, none of these meetings are behind his back.

    So, it's still holding true….knowledge is power.

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