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Jojo71
Jojo71 Member Posts: 51
edited September 2015 in Just Diagnosed With a Recurrence or Metastasis

Hi,


I was newly diagnosed with liver, lung, snd bone metastasis. My onc told me I could go on tamoxifen or lupron and a tarageted therapy called ibraxen. She also said I could do a couple of months of xeloda to get the cancer under control first. Se said the hormonal therapies can take up to 6 months to work.

I went to the cancer treatment centers of america for a second opinion. The onc there seems to think that none of those therapies are good enough. He thinks I should do IV carboplatim. He says I have a 70 to 80 percent chance of it working, but the xeloda is more like 30 percent. He says I don't have much time..my liver enzymes are already elevated slightly.

I am largely anti-chemo...but I am scared...I have a little girl to think of.

Also,it seems like the carboplatim is usually done in a combo, not by itself like the onc wants to do.


Does anyone have any experience with a situation like mine or either of those drugs? I have to do something fast.


Thank you,


Jojo

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited September 2015

    JoJo - I see that you've received no response to your message for which I'm truly sorry. It might be it got overlooked in the overnight hours. I'm going to post some links to the Stage IV forums where you should probably repost your questions. And besides these forums are loaded with other excellent information. Not to say others might not see respond when my response pops back up to the top of active topics. I'm not certain but I believe the "ibraxen" your onco mentioned is either Ibrance or Abraxane. These ladies are wonderful and I hope you get your questions answered.

    https://community.breastcancer.org/forum/8

    https://community.breastcancer.org/forum/8/topic/7...

    https://community.breastcancer.org/forum/8/topic/8...


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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • inks
    inks Member Posts: 746
    edited September 2015

    luvmygoats - I think the OP may have referred to Ibrance, it was recently approved for stage IV.

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited September 2015

    Thank you Tectonic. Great answers for Jojo.

    Thanks Inks. When I put the OP's term in google search it brought up Abraxane which I thought was probably not what her onco meant.

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited September 2015

    Hi, Jojo - Here's a link directly to the Ibrance thread. I hope that helps you a little - just know that you're not alone in this...

    https://community.breastcancer.org/forum/8/topic/8...



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  • Maureen813
    Maureen813 Member Posts: 2,893
    edited September 2015

    hi JoJo

    I'm a SIV mester with cancer in many places also. Chemo isn't as bad as everyone thinks. I've been on many chemos and did ok for the a good portion of the time. Please repost in the stage IV forums. You will get a lot of support from women who have been in your situation. It's a great group that no one wanted to join but are happy they did reach out. My advice ; find an oncologist you trust because you will work closely with them for a very long time.

    Love and hugs

    Maureen

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited September 2015

    Hi JoJo, I go to a major medical center in Cleveland for my treatment, and the only opinion about my care that truly matters to me is my own. I have a care team that consists of 16 Doctors, and I am stable and grateful right now. I finished DD AC/T on 11/25 2014. I also had a mastectomy and 33 rads and finished my treatment plan late March. I am now back to work at a new full time job, and doing very well.


    For me, the two vastly different opinions on your treatment plan would raise a red flag. I did my homework and ran the game plan with my Doctors from day 1. They all agreed that a very aggressive plan was needed, and the tumor board backed that up. So for me, the MO and BS set up the plan and the Board of 8 sealed the deal. That's enough for me. I would also be leery of the scare tactics and push to do something fast. Why?


    BC can scare the crap out of you, it did me and the word chemo set me up to spin out of control. But I did it, I worked full time, and now I'm just trying to live my life. Do your homework, and do what is right for you. Don't second guess it, don't look back, just get your game on and run the play. That's all we can do, there isn't any escape key or easy button. But we got your back and will support you! Cheryl

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  • Jojo71
    Jojo71 Member Posts: 51
    edited September 2015

    Thank you everyone!


    I'm in a very serious position, according to the onc at the cancer treatment center. I have 12 tumors in my liver. He says in a few months my liver will not be able to handle chemo and he won't be able to do anything. He says we have to be very aggressive now before its too late. He says I have too much tumor for hormones to work. He thinks the IV chemo will work better than xeloda, but I'm not sure how accurate that is. it also occurs to me that the center will make money off the IV chemo. I told him that lots of women on this forum had good results with xeloda, and some are NED. He said they are very lucky and that is rare.


    Also, I am already on tamoxifen, but just started it less than 2 weeks ago. He said tamoxifen is the weakest treatment.

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  • Jojo71
    Jojo71 Member Posts: 51
    edited September 2015

    yes, I meant ibrance!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2015

    Jojo, if I was in your situation, I would get an immediate appointment at an NCI-designated comprehensive cancer center. Here's a list of them. http://www.cancer.gov/research/nci-role/cancer-cen...

    I'm suggesting this because these are the places that see far more breast cancer than any local oncologists or even CTCA see -- to the degree that they have oncologists who specialize only in treating bc, so will have the most experience with cases similar to yours. They are also the places that do the research and have on-going trials.

    Although I'm not a doc, some of the things you were told by each of the oncs you've seen make sense, but I'm not sure either one is entirely on the right track, and the main problem w/CTA is that most health insurances will not cover them or at least won't cover many of the integrative txs they want to do.

    I would be far more secure getting to an NCI-designated cancer center, where they will base their recommendations on the most thorough evaluation of your situation, as well as the lastest research.

    Also, for the most part, while not a walk in the park, chemo for bc is not nearly as horrible as chemo for some other cancers, so please try not to let that influence your choice. You need to be seen by and follow the recommendations of a breast cancer specialist who will base his/her recommendations on solid, evidence-based research and experience. If you want to let us know where you're located, perhaps others here can guide you to who they use if they're in the same general area. But if you call one of the cancer centers on that list and fill them in on your situation, you should be able to get an immediate appointment.

    Good luck, and please keep us posted. And don't lose hope! There are other women on BCO with mets to bones, liver & lung who are stable after getting on the right treatment for their particular situation. Praying you will too! Hugs, Deanna


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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi Jojo-

    We wanted to pop in and welcome you to our community here at BCO. We know how scary it is right now, and how overwhelming this can all be, but just know that you're not alone. The links Goats and AZ sent along will connect you with many women in your shoes. And as you can see from the response you've gotten, this is a very welcoming and knowledgeable community.

    Please let us know if we can be of any assistance. You're in our thoughts!

    The Mods

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