Stage IV, doing well and on hiatus from treatment?

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Tina2
Tina2 Member Posts: 2,943
edited June 2019 in Stage IV/Metastatic Breast Cancer ONLY

Let's discuss!

Tina (on a break from Faslodex since October, 2018)


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  • finallyoverit
    finallyoverit Member Posts: 382
    edited May 2019

    Not sure I’d call it hiatus, but I graduated to every other month MO appointments and twice yearly scans.. does that count

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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2019

    Finallyoverit,

    I was referring specifically to pharmaceutical treatment, not appointments or scans. However, it's great that you've "graduated" to fewer of both!

    Tina


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  • Chicagoan
    Chicagoan Member Posts: 728
    edited May 2019

    Tina,

    I am not on hiatus but I hope that someday in the future I will be. How did you decide to take a hiatus? Did you ask your MO or did the MO suggest it? How often do you get scanned? I bet it feels great to be free from the side effects of treatment.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2019

    Chicagoan,

    I had just returned from a trip to Greece which I found more arduous than I'd anticipated, and had always wondered if the Faslodex injections were affecting my ability to move well and without pain. Since I had had no evidence of active disease for years, I asked my MO if I could take a hiatus. He answered "yes" instantly, gave me three months and told me to look out for any symptoms. I have seen him several times since then and had a set of scans in December; they showed no changes, so we decided I could stay on treatment hiatus except for Prolia twice a year. I will have scans next month before I see him in July. If they're clear, maybe we'll continue to play this by ear.

    I would love to "talk" with others who are taking a similar approach.

    Tina

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  • B-A-P
    B-A-P Member Posts: 525
    edited May 2019

    I'm only on tamoxifen as of right now. Will be switching to Femara after my ovaries are out. Other than that I am on no other treatment :)

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited May 2019

    Tina,

    Thanks for the information. I secretly wonder if I could stop treatment myself-it seems like I feel fine except for the side effects of letrozole and Ibrance. I should ask my MO if I have evidence of active disease at my next appointment. I'm happy you are getting this break and hope it lasts forever!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited June 2019

    Tina,

    It's like your cancer is incapable of metastasizing outside of the lung?! See if they can sequence the biopsy to figure out why its so recalcitrant, there may be very important information there for the rest of us! Have a happy summer..

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2019

    I have never had any tx save for AI’s. I have been NEAD since rads to my bone met. I’m not brave enough to stop swallowing that little pill each night yet

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  • Goodie16
    Goodie16 Member Posts: 446
    edited June 2019

    The anti-hormonals are powerful drugs. I've only been on Tamoxifen and now Arimidex. NEAD since 2015.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2019

    Cure-ious,

    Yes, I'm hoping others can benefit from scientists learning more about about my relatively indolent cancer. I am in the Outliers Study conducted by the University of Wisconsin as well as the Dana Farber MBC Study.

    Tina

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  • bigbhome
    bigbhome Member Posts: 840
    edited June 2019

    Hi all, After the 3rd mixed results pet scan, I decided that I needed a break from treatments. I have bone mets that I have been fighting for 7 years now. Faslodax, Xgeva for 3 1/2 years, I/L for almost 3 years, then Xeloda for about 8 months I decided my body needed a break.

    I had a huge scare at the beginning of this year where they got my scan mixed up with someone else. Even though I knew as soon as I saw it that that was not my body, it took them almost 3 weeks to acknowledge that it was not mine. During that short time I took a nosedive emotionally. I have been seeing a counselor for months and feeling much better! I also realized that I was sick and tired of feeling sick and tired, so I decided to take a break. I have been off treatment since early April and loving it!

    Xeloda was not working as well as we had hoped so it 2 time to change treatments again. I found myself incredibly reluctant to even discuss anything else. I am extremely sensitive to all medications and just wanted to feel "normal" for awhile.

    We did radiate the pelvic met in my left illiac as it had survived 2 treatments and was causing significant pain. I have been feeling so good, I find myself reluctant to even discuss future treatment. I won't even agree to another pet scan yet. I think that as long as my Tm's stay low I will just enjoy my life!

    My MO is sort of ok with this. But she is not pushing me. I realize that this is somewhat unorthodox but it was what I want.

    Waving hi to all of you and I'm keeping you all in my thoughts and prayers everyday!

    Claudia



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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited June 2019

    Hi BigB. I saw you had posted here, I've been wondering how you are doing, now I know. I'm so happy to hear you are feeling good. I totally get the tired of feeling tired. You know I feel the same about follow your gut instincts. I just finished my third cycle of X. Totally bummed that I have to wait till July 15 to get PET ( July 12) results. I thought she would scan sooner but no, insurance rules. X is not hitting me too hard, I think I could stay on it for a long time IF it's working. Hoping I can get to NEAD someday. 💞



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  • GinnyO2
    GinnyO2 Member Posts: 125
    edited June 2019

    Hi, I think that I'm getting ready to start the regime that you are taking. I know that my response may be different from your's but can you share what side effects you've had and how long have you been taking these drugs ?

    Thanks in advance, Ginny

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