Newly Diagnosed Stage IV, waiting for next steps

tyling
tyling Member Posts: 4

I'm in Toronto, Canada. I was Stage 1 in 2014 and went on Tamoxifen for the last two years. I was just diagnosed with widespread bone mets. They told me to stop taking the tamoxifen a couple of days ago. I'm waiting to see if I can get Ibrance. So I'm on nothing right now. I'm so anxious to start something next already. Is it normal to have to wait a week maybe two before everything is in order to start the next thing?

Comments

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2016

    Yes, it is very normal to take a week or two to get a treatment plan in place. And, those weeks are excruciating. Feel free to ask your doctor for any pharmaceutical help you need to survive this uniquely awful time. I, personally, demanded some valium. The doctor gave me a sideways look, then hauled out her prescription pad.

    You'll need the time to "wash out" the tamoxifen in your system. Read the bone mets thread, long, but very helpful: https://community.breastcancer.org/forum/8/topics/...

    When tackling a gigantic thread like that, I skip around, unless I find a conversation that very much applies to me.

    If you can, fill out your profile and information, so that ladies who share your pathology can chime in with treatment advice. For instance, we can assume you are hormone positive, because you were on tamoxifen.

    This is a marathon, not a sprint. You have years ahead of you. If you are in pain, talk to your medical team about pain management. Chronic pain can suck the fun out of daily living.

    I might be biased, but I think that this is the best site to go to for information and support. There is some crazy stuff on the internet, and if you google late into the night, you can scare yourself silly. The research field is changing so quickly, that any data over five years old needs reading with a raised eyebrow.

    Let us know how you are doing.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    We are all here for you! As blainejennifer said, it is indeed a marathon, and not unusual to have to wait. However, expressing your concerns to your treatment team is also really okay as well. And second opinions if you don't feel comfortable is an option as well.

    Check out the Bone Mets thread as well.

    Hang in there! You're not alone!

  • GG27
    GG27 Member Posts: 2,128
    edited May 2016

    Sorry that you're here, but it's a good place for support & getting your questions answered. It's very normal to wait up to 2 weeks to get the tamoxifen out of your system, it has a half life of 5 - 7 days. Are you having pain? If so have they given you anything for it? I have found that a tylenol/ibuprofen combo helps alot. Please try not to read much on google & don't hesitate to join us on the bone mets thread. cheers, dee

  • tyling
    tyling Member Posts: 4
    edited May 2016

    Thank you so much for the support. I'm still learning how these message boards work.

  • stagefree
    stagefree Member Posts: 2,780
    edited May 2016

    welcome on board. Sigh. You will adapt in no time. Don't think, just live a moment at a time.

    Hugs

    Ebr

  • pajim
    pajim Member Posts: 2,785
    edited May 2016

    tyling, welcome. Hang tight, the new treatment(s) will start soon enough. A week or two won't matter. In my case it was three as I had to have surgery. My mets responded just as well three weeks later as they would have earlier.

    Waiting can be just awful, but you'll get there. If you need help (pain, sleeping, anxiety, depression), ask your doc.

  • zarovka
    zarovka Member Posts: 3,607
    edited May 2016

    tyling - Welcome. The most active Ibrance thread is Ibrance 2015. It's a good place to ask questions about how Ibrance works.

    I am on Ibrance/letrozol. I complement my regular therapy with integrative cancer care. My complementary therapies are overseen by a medical doctor who specializes in integrative cancer treatment. My regular oncologist reviews it all. Ibrance appears to be working very well with the complementary treatments.

    I mention this because researching your options for complementary care will give you something useful to do while you wait. I wish I had gotten started with my complementary care earlier in the process. Canada's integrative medical care is very advanced.

    >Z<

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