Just diagnosed with Stage IV

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jods520
jods520 Member Posts: 9
edited February 2018 in Stage IV/Metastatic Breast Cancer ONLY

I am new to this forum but realize it could be a good place to connect with others with a similar diagnosis. I was just diagnosed with breast cancer December 18th, and had to also have a bone biopsy of my left hip as something showed up on my Petscan. I found out today it was positive, so they know it has traveled. I am so sad but really trying to stay optimistic.

My dr. is going to start me on Tamoxifen (I am ER positive) and Ribocyclib, an oral chemo next week.

Does anyone here with any experience taking these two drugs?

Thank you,

Jody
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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2018

    Jody, I have not had either of those drugs, but I started out Stage 4 , also with one bone met to my hip. I’ve had some ups and downs, but 6 1/2 years later I’m still doing well, am otherwise heathy, watching my children become adults, traveling and loving life, even tho I still have cancer.

    Hope that helps you stay optimistic.

    Stefanie

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited January 2018

    It takes some time to adjust. I'll be hitting my five year mark in a few months. I have young children and manage to keep up with homework and practices and games. I am more likely to go to bed when they do.

    I took ibrance and arimidex and did well. It's a similar regime to yours. Traveled internationally. Fatigue was the biggest side effect. Had to give in and nap sometimes.

    Just remember the first round or two are the hardest as your body and mind adjust. Then you will level out. Don't be afraid to tell your nurse or MO about your side effects. There's lots of drugs out there to help.

    Also check out support groups, counseling, yoga classes, Livestrong programs in your area for support. I'm amazed how much is available. I'm still close with the girls I met at Livestrong.

    Good luck.

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  • pajim
    pajim Member Posts: 2,785
    edited January 2018

    Jody, welcome! Welcome to the club no one wants to join. The first few weeks are hard -- be gentle on yourself. Once you get used to the treatment you'll lead almost a normal life.

    Join the Ibrance thread. Ribciclib is a sister drug to palbociclib (which is Ibrance). Lots of ladies are taking the same drugs and can offer advice.

    Some women sail through the CDK 4/6 inhibitors, some don't. Do not assume you'll have a hard time. I didn't. And if you do get tired, rearrange your life so you can take a nap.

    I've been at this almost five years now. I still work full-time and do almost all the things I ever did. When I was first diagnosed my onc told me 'not to give away my stuff". In other words, think long-term.

    Good luck! Life will get better.

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  • jods520
    jods520 Member Posts: 9
    edited January 2018

    Thank you, ladies. Your responses made me feel better. I think I am just still in shock that this is stage 4 outright, and as of Thursday, the treatment plan that I thought I was going into has changed completely. I also think the "not knowing what to expect" aspect of this all is nerve wracking. 

    I start fighting this fight on Monday! 

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited February 2018

    i found out 2 days after you did.

    And I am in at least as much shock as you are.

    I haven't figured out how to make my history show up on my signature...but I was 1st diagnosed as bilateral stage IIIa and bilat node-positive. I was getting accustomed to the idea that I would be a cancer survivor instead of a cancer patient the rest of my life. But on 20 DEC 17, I found I was wrong...mets to spine, pelvis, sacrum and possibly mandible. Mandible needs further testing to confirm...

    I have started with an 8 wk mindfulness class and a new psycholohist to help me put this all in perspective.

    From reading many, many posts from our "mets sisters," I see have alot to learn and alot to do before I can even think about giving up. Things are not at all as they seem at first glance.

    Let's commit to learning as much as we can, doing as much as we can and living as much as we can.

    Fondly,

    V

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2018

    Gumdoctor, you are learning fast. I love that you are being proactive with that mindfulness class. I think it will make a big difference. I am now over 10 years out and am grateful for having lived in the present for so long.

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited February 2018

    Heidihill,

    Thank you so much for your encouragement.

    And a million congratulations on your 10 yrs!!! Wow!!! HOW INSPIRING YOU ARE :)

    V


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  • jods520
    jods520 Member Posts: 9
    edited February 2018

    Gumdoctor, you are so right! We have so much to learn, and we are all in this together! I just finished my first cycle and feeling pretty ok so far. I have felt tired the past few days and just very scared of getting sick because the flu is going around so badly, but so far, so good. I am just taking it day by day really, and trying to live life.

    Heidihill- you are so inspiring, a bog congrats on hitting 10 years! I love to hear that, and it gives me hope.

    - J

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