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Entrectinib now for about 1 month...

cmpattberg
cmpattberg CSN Member Posts: 23 Member
in Lung Cancer #1

In late 2020 they found stage 3 lung cancer. Did chemo, radiation and followed up with immunotheraphy.

On March 27th this year I had surgery to remove a tumor pushing against my brain.

Has anyone else been prescribed entrectinib. Just wondering about side effects.

Thanks.

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Comments

  • eDivebuddy
    eDivebuddy CSN Member Posts: 165 Member
    #2

    @cmpattberg Did you do radiation to the tumor bed?

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  • cmpattberg
    cmpattberg CSN Member Posts: 23 Member
    #3
    https://csn.cancer.org/discussion/comment/1722681#Comment_1722681

    No radiation after the surgery. They are trying the oral medication first.

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 165 Member
    #4

    Good luck with the Entrectinib. It's does appear to cross the blood brain barrier.

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  • cmpattberg
    cmpattberg CSN Member Posts: 23 Member
    #5

    Just reporting back.

    I started on this drug after my surgery in March/April 2025.

    I have had 3 MRIs and it has decreased to 'no evidence of cancer' in my cerebelum. I'll likely remain on the drug.

    It does cause side effects, but they are manageable for now.

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  • suzcancerfight
    suzcancerfight CSN Member Posts: 4 Member
    #6

    a 12 mm spot was found in my lower left lobe that wasn’t there back in November. CT scan, PET scan, now I have to go back three months which will be April 15 with a new CT scan on March 30.

    everyone is telling me “oh you’ll be fine , this is very common and very low chance it’s cancer” I know they’re just trying to make me feel better but I need to know the truth. Should I be worried?

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 165 Member
    #7

    can’t give you a 100 percent guarantee, but it’s important to remember that the vast majority of lung nodules turn out to be benign. Well over 90 percent of incidental lung findings are things like scars from prior infections, inflammation, or other noncancer causes.

    Did you have a PET-CT in November? Have you actually been diagnosed with cancer already?

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  • suzcancerfight
    suzcancerfight CSN Member Posts: 4 Member
    #8
    https://csn.cancer.org/discussion/comment/1726052#Comment_1726052

    hello, I had a CAT scan back in November. Earlier January 2026 I had another CAT scan that showed a new spot. A few days later I had a PET scan. The PET scan showed the spot glowing, but not very bright. So now I am scheduled for another March 30, 2026

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  • suzcancerfight
    suzcancerfight CSN Member Posts: 4 Member
    #9

    I’m scheduled for another CAT scan March 30. Here is a couple pics.

    IMG_8862.jpeg IMG_8861.jpeg
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  • cmpattberg
    cmpattberg CSN Member Posts: 23 Member
    #10
    https://csn.cancer.org/discussion/comment/1726051#Comment_1726051

    Try to relax. Worry does not help, information does. If you trust your doctors, good. If you do not, get second, third opinions. It's your body not theirs. Take control. Good luck.

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 165 Member
    #11

    Not a doctor, but the images you shared look consistent with what you described, a small nodule in the lower left lobe, toward the back, with mild uptake.

    What you’re feeling right now is very common. There’s even a name for it, “scanxiety”, the stress and worry that can come in the days or weeks waiting for follow-up scans or results. Many people struggle with that part more than the tests themselves. Some find counseling helpful, and cancer centers usually have people who specialize in this if you ever want support.

    You could consider a second opinion. Not because it’s required, but because having another set of experienced eyes can help reduce uncertainty and give peace of mind. A thoracic oncologist or pulmonologist at a major cancer center or teaching hospital is often a good place to start, and your PCP can help with referrals if needed.

    I also wrote something about how to think through choosing a cancer center. While it’s focused on treatment decisions, the same ideas apply when seeking another opinion.

    https://forums.lungevity.org/topic/53851-choosing-a-cancer-center/

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  • cmpattberg
    cmpattberg CSN Member Posts: 23 Member
    #12

    I agree, second (even a third) opinion will at lease set some fears aside.

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  • suzcancerfight
    suzcancerfight CSN Member Posts: 4 Member
    #13

    Thank You ALL for responding to my "scary new life for the moment" cry. Noone that hasn't experienced this anxiety understands. Even I don't know the WHOLE just of it like all of you. But I do know that having people that have/are going through similar to me supporting me and each other is priceless. As time moves on, I can tell my husband is starting to treat me the way he used to (I sure felt special and loved for a little while).

    I will touch base again after March 30 (another CT scan)

    Stay strong and know I am praying for ALL of you as well as myself🧡

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