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Progression and New Treatments

tina2 Member Posts: 758


My most recent scans in early January indicated that my lung mets had enlarged considerably. I have stopped Faslodex after my nearly 12-year run and will beginPiqray together with another treatment which is still being worked out.

I start the Piqray tomorrow. Any tips? There's not a lot of info on the thread here, but I see at least one person has had no SEs to speak of, which is heartening. (IMHO, any drug that costs so much should be SE-free!)



  • cowgal
    cowgal Member Posts: 625

    Sorry to hear that your lung mets have enlarged. No advice but I hope the new treatments work for you!

  • moderators
    moderators Posts: 8,286

    Hi Tina2,

    We're so sorry to hear of your progression as well. We hope others will be by soon to weigh in! Would you like us to add "Piqray" to your subject line in the hopes of others seeing the thread and sharing their experiences?

    In addition, we wanted to share this page from the main site on Piqray, which can give you some ideas about what to expect.

    We wish you the best with your new treatments!

    --The Mods

  • nkb
    nkb Member Posts: 1,561

    Tina2- I guess the Piqray site is quiet these days. I have never taken it, but, I know from previous posters that blood sugar and rashes are common problems, I know that some people do a keto type diet to deal with the high sugars and others need insulin- I think that allergy pills have really helped with the rash. hope others chime in soon.

    Sorry to hear about your progression!

  • vlnrph
    vlnrph Member Posts: 493

    I have been posting for the past several weeks on a thread about alpelisib called "Piqray users, what is your experience?" It's surprising there are not many participants because the PIK3 mutation is supposed to be fairly common.

    It's advisable to start taking a 24 hour OTC antihistamine such as loratidine/Claritin now to minimize any rash that may appear. Yesterday, my endocrine consult agreed with the regimen of metformin and Jardiance that the oncology team prescribed.

    Long term use of insulin is not helpful to control hyperglycemia due to the mechanism of action. I had a dietary referral in order to conf my self-designed low carb diet. Regular exercise is also important to burn off excess blood sugar. Stay hydrated!

  • tarheelmichelle
    tarheelmichelle Member Posts: 248

    Tina, I wish you well on Piqray.

    I’ve been on 8+ treatments and Piqray was the worst. In my experience, oncologists are not paying enough attention to the hyperglycemia. I already had glucose monitors, so I was checking from the get-go. Controlling the hyperglycemia took several different drugs and frequent trips to an endocrinologist. Exercise didn’t help at all. My hair and eyelashes almost completely fell out, and my eyes became so sensitive I couldn’t wear contacts. My vision got worse, but improved after stopping the drug. I developed cataracts that required surgery.

    On the plus side, I lost 15 pounds.

  • nkb
    nkb Member Posts: 1,561

    Hi Tarheelmichelle! I just noticed your name and happy to see you doing well- I remember you as being a friend of Kandy's so many years ago. I have a friend on this drug and looked at this thread to learn a little and there you were.

    what treatment are you on now? hope it is easier than piqray!

  • gailmary
    gailmary Member Posts: 449

    Tina2 sorry to hear of your progression. You had a great run o. Faslodex. Here's hoping next drugs are easy on you.