HER2+ MBC ongoing treatment, life, etc.

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nowaldron
nowaldron Member Posts: 94
edited October 2020 in Stage IV/Metastatic Breast Cancer ONLY

Hi Everyone,

Happy 4th! I hope you all have a relaxing, fun weekend.

I don't post often, usually when I have a question, so here I am again with a few questions.

This past February (2020), I passed the 4-year mark of my diagnosis. When I was initially diagnosed (de novo) the cancer had spread to bones and liver. I had radiation, chemo and have been on Herceptin and Perjeta every three weeks (Zometa every 12 weeks). So, I am very fortunate and I feel great - aside from the initial 6 months, I've had little disruption to my life.

Ok, so here's the thing - I live with this every day (right) and continue with treatment, but I almost feel as if my onc has kind of tossed me aside now that I am no longer critical. Has anyone else felt this way? I only see her every six months now when I have scans, I see a NP every 12 weeks, but other than that I just go in for treatment. Also, I am a college professor and I am trying to decide whether to go back and teach face-to-face in the fall or teach online (or some other variant, hybrid, etc.) I messaged my onc and got a reply from a NP (who I don't know) and said that since I am not immunocompromised, there's no reason why I can't go back f2f in the fall, but it was my decision (which they would support). Doesn't having MBC make you one of those whose immune systems are compromised?

So, am I just being a big baby? Overall, I have dealt with MBC very well psychologically, but it's weird that I now feel like I am out here sailing without a medical rudder. Any thoughts? I mean I not cured, I'm not NED, but "stable" and live every day knowing that it is lurking somewhere....

Thanks so much for reading this and have a great Fourth of July!

Nancy

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  • helenlouise
    helenlouise Member Posts: 420
    edited July 2020

    Hi Nancy, I don’t think your being a big baby! At all.

    I too am on H&P three weekly and recently scanned NEAD.

    Since my last diagnosis I went to half load at work. I train in vocational education. Which gives me 17.5 per week. My classes are online and in the evening. I try to keep the work load to the front end of the week. It suits me fine. I like my work but don’t need to be stressed by it and full load is stressful. Plus I believe the cancer will return, even though I hope it doesn’t, so I want to enjoy more free time.

    I do bloods and see my MO before every third infusion and I have a heart scan pre that visit. I get what you says about no medical rudder. It’s weird after being so busy with cancer for so long to go to a consult appointment each 9weeks does feel a bit like being set aside. We don’t have NPs so I get to see MO but I think if we did have NPs that’s who I would be seeing.

    The possible side effects of H&P does list Neutropenia so it is possible we could become compromised. Moreover, having MBC means one’s health is not 100% and that should always take priority in decision making.

    Hope you enjoyed 4th July celebrations.



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  • illimae
    illimae Member Posts: 5,710
    edited July 2020

    I was diagnosed de novo too with H&P keeping me stable for 3.5 years. I get scans and see my MO every 3-4 months. Since I’ve only been stable, not NED and have brain mets, I am monitored closely but never feel set aside, this is just my routine.

    I don’t think you’re being a baby either but I think 6 months sounds reasonable in your case, so long as they’re responsive to calls/messages should the need arise.

    As for being compromised, I was told that only applies to those on active chemo, like a taxane but that we still need to be careful given how reactions to Covid vary. Hope this helps.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2020

    when my MO first told me she wanted to just see me every 12 weeks, I felt that way too. Sort of like being abandoned . I have changed to a new cancer center (not for that reason) and the MO here sees me for every infusion (required) but I still feel like I don’t get a lot of attention because I am stable, and not presenting with problems right now.

    It does feel kind of scary to not have that support , I felt a strong bond , almost dependence , on my original MO. But, I tell myself the important thing is that the support, attention and care will be there for me when it does become necessary.

    As far as being immunocompromised, my understanding is that I am not, but, at the same time, I want to avoid any illness that could interfere with my ongoing treatment. We have to use our best judgment on this

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  • Elderberry
    Elderberry Member Posts: 993
    edited September 2020

    Nancy: what is happening with your teaching in light of Covid?

    In terms of feeling abandoned, I get it. Try to assume that all is well in the eyes of your MO. Since covid my M.O. only calls me but he calls every three weeks after my blood work comes in and before I go for my H&P. So I am not feeling rudderless. I am sure your MO would respond should anything change.

    My MO told me everyone should be careful with coronavirus circulating. He figures this Fall will be bad, very bad, or terrible. Yes -- being on Taxol or other chemos makes you even more vulnerable but no one should take this lightly. No one wants to be down with even a mild case and have to miss her infusions.

    As our Dr Henry says:


    Be kind

    Be calm

    Be safe

    Cyber hugs to all


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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2020

    In case anyone is interested.......

    Seattle Genetics is looking for 6-8 people living with HER2+ MBC to consider being selected for a virtual advisory board. You will need to be available during the first 3 weeks of November for two virtual events (2.5 hours each) and two pre-work offline activities (1 hour each). * Honoraria will be provided for your participation.

    A few additional Eligibility Requirements:

    1. Diagnosed with HER2+ metastatic breast cancer
    2. No treatment experience with TUKYSA or ENHERTU (discussion with HCP is OK, just have not been prescribed or started therapy commercially or as part of a clinical trial)
    3. No prior engagements/ad boards with Seattle Genetics

    If you are interested in participating, contact Jen Smiley | C: 425-327-4694 | jsmiley@seagen.com | Seattle Genetics, Inc. | www.seattlegenetics.com

    +++++++++++++++++++++++++++++++++++++

    Here are some other details Seattle Genetics will likely be asking of possible participants:

    1. When were you diagnosed?
    2. Where are you receiving treatment? (community vs. academic)
    3. What treatment are you on today? What treatments have you been prescribed previously?
    4. Do you utilize social media for anything related to MBC?
    5. Where are their metastases beyond breast?
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