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Stage IV - Mutation PIK3CA

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savaloko
savaloko Member Posts: 30

Good afternoon. I would like to know which of you have this mutation?

When did you find out? What treatment have you been following all this time? And is there anyone who did it?

Read about Pikri. They have bad effects. Problems with blood sugar and people sit on it for no more than 5-7 months.

So, there is no cure for this mutation, so what do we do now? Just Operation?

First-line therapy - Ribociclib \ Letrozole since 2019. A month ago - an increase in a tumor in the mammary gland.

Er+, Pr+, Her2-

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  • olma61
    olma61 Member Posts: 1,024
    edited June 2022
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    Treatment will depend on your hormone receptor status and HER2 status. You aren’t limited to Piqray just because you have the mutation

    Stage IV doesn’t usually get surgery but it is possible.

  • savaloko
    savaloko Member Posts: 30
    edited June 2022
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    olma61 - ER+, PR+, Her2-

  • olma61
    olma61 Member Posts: 1,024
    edited June 2022
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    Anti estrogen therapy then. These are the NCCN guidelines for ER+ HER2- metastatic breast cancer if you are not in visceral crisis (organs failing). Maybe get a second opinion from another oncologist if you don’t feel comfortable with their decision

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  • savaloko
    savaloko Member Posts: 30
    edited June 2022
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    olma61

    They say that when PIK3CA is mutated, anti-estrogen therapy does not work. But how does it not work, if for almost 3 years on the combination of ribociclib \ letrozole everything has greatly decreased and only last month, an increase in the tumor in the mammary gland.

  • sondraf
    sondraf Member Posts: 1,601
    edited June 2022
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    Savoloko - when you say mammary gland, do you mean the primary increased? If that is true, and the only thing which increased, I would push for local resolution (surgery) in order to stay longer on the anti-estrogen therapy. That was the call my MO made (unfortunately I had one bone met grow after so they switched me up my drugs after) and I accepted the risk. Had that met not grown I would have stayed on Ibrance/letrozole.

  • savaloko
    savaloko Member Posts: 30
    edited June 2022
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    sondraf:

    In 2019, there were initially metastases in the lung and a destroyed tumor in the mammary gland.


    Then Ribociclib\letrozole was prescribed and within 3 months most of the metastases in the lenoks disappeared and the tumor in the mammary gland decreased by 3 times.

    After 6 months, there was another improvement: fluid in the lungs decreased to 15 and the size of the tumor also decreased.

    And so, last month, 2 small formations appeared on the mammary gland, and the original tumor remained stable. It's weird. And there was one small eye in the lungs.


    But we do not know what it is, because in February of this year they caught Covid.

  • savaloko
    savaloko Member Posts: 30
    edited June 2022
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    No one else has this mutation?

  • dutchiris
    dutchiris Member Posts: 783
    edited June 2022
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    I have this mutation. I did not have it when I was first diagnosed as stage 3c. I did not have it with mets to bone 6 years later. It was found in progression to ovaries after 18 months of Ibrance and letrozole. At this time my estrogen receptor flipped from positive to negative.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited June 2022
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    There are several topics about this already that you may want to check out:

    https://community.breastcancer.org/forum/8/topics/...

    https://community.breastcancer.org/forum/8/topics/...

    There's also a Facebook group with over 950 members: https://www.facebook.com/groups/1699418116870066/

  • savaloko
    savaloko Member Posts: 30
    edited June 2022
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    Have made research of a mutation in other clinic. They write that this mutation is not detected.

    How can this be?

  • savaloko
    savaloko Member Posts: 30
    edited June 2022
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    The structures of cancer in situ and tumor emboli along the periphery of the tumor are not reliably determined.

    Lymphoid infiltration of the stroma is less than 10%

    What does it mean?

  • olma61
    olma61 Member Posts: 1,024
    edited June 2022
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    I dont know the answer to your last question but if you are looking for other members with the mutation here is thread about the drug PIQRAY -

    https://community.breastcancer.org/forum/8/topics/...

    Hope it helps