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10 years and wondering who has taken a break from treatment

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kjones13
kjones13 Member Posts: 662

hello! I have not been on the boards for a long long time. I had to take a break for my mental health, also because I have done extremely well, and then had to take care of my mother during her ovarian cancer diagnosis through her passing….

So today I met with my oncologist and he said since it has been 10 years since my stage 4 de novo diagnosis and I have had no reoccurrence and still on my first line of treatment…he is suggesting that I take a break from treatment. He said he has no data to go off of since I started basically right after the cleopatra trial. I have many mixed emotions and I was just wondering if there are others in a similar situation? I'm a if it ain't broke don't fix it kind of person and I have an 11 year old daughter to still raise…I did reach my first goal of watching my son graduate high school, but my body is tired and worn down. I have been sleeping my life away. I realize how incredibly lucky I am to be in this position. I have lost so many wonderful people who deserved to live, and I still have friends just starting their stage 4 journey. It's mental fuckery that I stuff deep down in my denial folder. Any thoughts are appreciated. I do hope others find hope in seeing another long hauler on the boards. ❤️

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  • aprilgirl1
    aprilgirl1 Member Posts: 786
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    Kjones, thank you for posting and I do love seeing stage IV patients who have been doing "well" for 10 plus years! I believe there is a woman that posted in the last year that is also 10plus years on herceptin. JeninMichigan might be her online name? I think she posted about taking a break or her MO saying she is considered almost cured. Herceptin has been a game changer for those who are her2+. Congratulations on making your first goal! It's important that you feel good while you survive. I am curious if it would be possible to not go cold turkey off of treatment but perhaps take a few months break? Maybe get Herceptin every other month vs monthly? Just an idea......

  • sunnidays
    sunnidays Member Posts: 161
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    I dont know anything about this but as you have an 11-year old I would be wary of stopping treatment, it would be different if you were an older lady maybe in your 60s or 70s, does your oncologist want you to stop altogether, or just take a break? are you having dredfull side effect from treatment.

  • olma61
    olma61 Member Posts: 1,027
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    I am only five years in on H&P and my new oncologist discussed with me stopping H&P already. I am now on a 2month break from H&P, not really by choice but because I am trying to get PHESGO approved so I dont have to go back to infusions every three weeks. I am still on anastrozole so not totally without treatment, either.

    I am not mentally ready to think about stopping H&P altogether but I am not worrying too much about this little break because sometimes people have to stop for a while if their ejection fraction goes too low, right? And most I've seen who've had to do it are perfectly okay. I am not due for a scan until October so I wont know if my little break did any damage til then.

    I was thinking about dropping the Perjeta if PHESGO didn't get approved, that just seems more doable.

  • kjones13
    kjones13 Member Posts: 662
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    Aprilgirl1–thank you for the reply. Yes I remember her name! I’ll take a look and see if I can find her. I have gone two months between treatments before…due to illness, and being run down from senior baseball playoff games and end of year senior stuff for my high schooler (that’s the busiest I think I’ve ever been in my life 😂)…I’ve never had any reoccurrence from taking a break or on the flip side, no reprieve from side effects either. I think it may take 6 months to a year to feel better again 🤷🏻♀️ And of course I’m not in my 30’s anymore 😉 but excellent question about tapering off or going every 3 months!! I can never think about questions in front of my oncologist. Brain fail. Thanks so much

  • kjones13
    kjones13 Member Posts: 662
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    sunnidays—thanks for your response. I’m very hesitant to stop and then have it reoccur, I would kick myself!! But I’m sooooo tired. I sleep 15 hours a day. My brain honestly feels like a constant state of chemo brain, which is very frustrating. My GI tract is shot. Leaving the house is tricky. I want to live and feel good for my daughter. But then again I don’t want to give cancer a chance to come back. I know I’m not in control of either outcome…just trying to figure it out. Oncologist said “take a break.” I think he left it open ended so that I can start back if I feel like I need to…but that could be tricky if it’s not medically necessary?? I don’t know. Thank you for helping me think through it! 🥰

  • kjones13
    kjones13 Member Posts: 662
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    olma61–I think your little break will be fine. I’ve done that several times throughout the years. It’s nerve racking though. Cancer steals our peace of mind sometimes. I wouldn’t drop the perjeta unless the side effects were just intolerable, but that’s just me. Not familiar with the other drug you referenced. I’m so out of the loop