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  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019
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    Hi all, I got the PET results and most likely I have Mets. On liver.report says there is a 2.5 cm low density lesion in the right hepatic lobe showing mild upper metabolic activity with Max SUV of 3.6. I think next will be a biopsy order to confirm. I just hate this...when I got my Hopes high and I got slapped on my face

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019
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    Ailirophile...

    I am so very sorry to read your news. My heart goes out to you. 😯💖

    No doubt it must be an awful shock.

    I am not going to offer anything except to let you know that you have your online posse right here and ready to walk with you through whatever comes next.

    Lean on us for courage, strength and love whenever you need.

    Yo are not alone.

    💖🌹💖🌹💖

  • KBeee
    KBeee Member Posts: 695
    edited January 2019
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    I am sorry to hear that. Hoping the biopsy shows something benign. Keep us posted.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019
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    Astrid and Kbeee thanks for heart warming messages. I am crossing my fingers.

  • mellee
    mellee Member Posts: 220
    edited January 2019
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    Ailurophile, I'm so sorry for what you're going through! I still recommend going to UC Irvine. They are on the top of their game and you will get excellent, cutting-edge care.

    For MO, I highly recommend Rita Mehta. She's a top breast cancer researcher who has pioneered several chemotherapy treatment protocols for breast cancer. She is also a very thorough and caring oncologist (http://www.ucihealth.org/find-a-doctor/m/rita-meht...).

    I didn't get surgery at UC Irvine, but the one who is recommended as the top breast surgeon there is Karen Lane (http://www.ucihealth.org/find-a-doctor/l/karen-lan...).

    Wishing you hope and healing!

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019
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    melee

    Thank you so much! that is my plan and I would definitely take that advice.I thought to ask for a liver biopsy from my own Mo and go to UCi center with all of the results. I want to believe in miracle🤗

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2019
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    Ailurophile, I'm sorry to read that you might have mets. I still think it's a very good idea to consult with UCI, or another NCI research hospital. In my experience, highly specialized hospitals are generally better equipped when our cases become more complicated. They are more up to date on the newest treatments and research, and there may even be clinical trials available to you. Please keep us posted. I'm wishing you strength and peace as you go through the next steps. ((Hugs))

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2019
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    Also, in response to your previous question - when you do go to UCI, try to get in with the whole team - medical oncologist, surgical oncologist, and radiation oncologist. Ask them to have your case considered by the tumor board - that is where all the doctors at a facility sit down as a group and try to come up with a plan for you.

    If you can't get in with all of them right away, at least get in with the MO or the surgeon, and they can get you in with any other doctors you need to see. That happened to me, (I could only get in with the MO at first because the new patient coordinators idiotically decided that I didn't need surgery - I was super angry) but upon seeing the MO I was immediately seen by the whole team the following morning. All I'm saying is, be persistent and advocate for yourself.

  • Kassy54
    Kassy54 Member Posts: 47
    edited January 2019
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    I am SO sorry you got such distressing news! Is your oncologist at a research hospital? If not, get a second opinion so you can know you are taking the best action and worry less. I know you will be around for your child though, regardless, as you have been so strong and gotten through to this point so well. Sending my best thoughts and hugs.

    As for an oopherectomy I can’t speak to the hormonal effects as I have been thru menopause, but the physical recovery for me was quick and relatively easy. I had it ten days before this Christmas and still hosted a large family Christmas. You are younger and would bounce back quickly.

    Please take care and update us on what’s going on.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019
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    buttonsmachine

    I will see medical oncologist this Friday and will give you an update. Thank you for your detailed reply, it is a big help🙏

    Kassy54

    My second opinion is at ucI and a member of Chao Family Comprehensive Cancer Center. My own oncologist is part of UCLAhealth and a member of city of hope. I feel I am in good hands . I am so glad that recovery is quick from oophorectomy because I have 2 demanding Divas at home! My beloved daughter and my spoiled cat that has a habit to eat from my hand or she simply won't eat at all😁


  • Astrid
    Astrid Member Posts: 1,033
    edited January 2019
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    Cats are so quirky and adorable ailurophile. Your family sounds perfect!Headphones

    How are you doing? The waiting is so hard.Hug

  • ailurophile
    ailurophile Member Posts: 124
    edited February 2019
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    Hi Astrid

    I met another oncologist on Friday, she agreed that my own oncologist is in the right path But she doubts what PET shows is actually Mets in liver.metabolic activity is moderate to weak, so she thinks it could be anything from hemangioma to an infection or actually the Cancer. she ordered a biopsy which I will do asap. Then we will go from there. I am so tired of being hopeful because for the past 2 months all I heard was bad.but still, I guess hope is a strong thing because it's still there deep in my heart.

    Couldn't agree more! Cats are adorable 😄

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2019
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    that is the most amazing news for you A!! I don't know whether to be excited that it may not be cancer in liver after all, or furious that you have been made to worry with a more dire dx than you needed to. It is the difference between a stage 3 and stage 4 isn't it? I might be mistaken with that.

    I am so glad you are getting a biopsy. I guess I feel this should have been the 1st call after suspicion rather than announcing mets there to you.

    Let's hope this onc is spot on eh?

    Best wishes for the biopsy.Heart


  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2019
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    Ailurophile, best wishes for your upcoming biopsy. I hope the spot on your liver is negative for cancer, but whatever happens, I'm wishing you peace in the coming days.

  • KBeee
    KBeee Member Posts: 695
    edited February 2019
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    Keep us posted on when everything is scheduled. Hoping for benign results


  • ailurophile
    ailurophile Member Posts: 124
    edited February 2019
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    Hi beautiful ladies, oophorectomy was done on past Tuesday February 5th. Biopsy for liver is scheduled for tomorrow morning.I will keep you posted when I get the results. Hope the biopsy of liver is not that hard. I heard stories and I am concerned and to be honest scared

  • pesky904
    pesky904 Member Posts: 263
    edited February 2019
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    Sending good vibes your way.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2019
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    it will be alright Ailurophile.

    One foot in front of the other


    May you be filled with calmness and peace.Heart

  • KBeee
    KBeee Member Posts: 695
    edited February 2019
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    Hoping it is benign!

  • ailurophile
    ailurophile Member Posts: 124
    edited February 2019
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    Hi everyone! My result is positive for liver mets. Its single small met but it's there. I will start fermara, verzenio and newest trial from lilly company which is a 3rd pill adding to this standard regimen, from the end of Feb. It's a phase 1 trial, the research has no name, and the pill is introduced with a number. There is no placebo in this trial and I have the right to drop out of it after 2 weeks if I want to.my oncologist thinks this pill is the next big thing for hormonal positive cancer . She already have 5 more in her office that are showing big improvements. Hope it is good for me too. Thanks to all of you who supported me emotionally and gave me hope.I really needed it and it helped me to calm myself down💗

    Have an extra sweet Valentine

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2019
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    sending a big hug Ailurophile. so sorry to hear your result,

    but optimistic with the new drug trial for you.

    many happy years ahead for you and your loved ones.

    Heart

  • KBeee
    KBeee Member Posts: 695
    edited February 2019
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    I am sorry you are dealing with this but am so glad you are getting cutting edge treatments.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2019
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    Ailurophile, I'm sorry to hear the spot on your liver was positive, but I'm glad you will be doing a clinical trial. I hope it goes well and is very effective for you! Please keep us posted on things, and best wishes.

    Heart

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2019
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    ys,thinking of you Ailurophile.

    I only recently discovered that an Ailurophile is a lover of cats! Great name for it.😀

    How are you doing?


    We are always here for you.

  • ailurophile
    ailurophile Member Posts: 124
    edited February 2019
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    Hi Astrid and all the beautiful ladies in here,

    Thank you so much for thinking about me and sending good vibes💓

    I am doing good!(surprisingly) . My treatments will start on March 7. Right now I am going through tons of different check ups all covered by UCLA. In case anyone is interested, the trial is identified by this number: LY3023414 inhibits two proteins, PI3K and mTOR. These proteins may be involved in the growth and survival of many kinds of cancers, I will have this beside fermara and verzenio(abemaciclib) my Mo said this might be the future of metastatic Breast cancer, if approved by FDA. We are only 20 women in this, worldwide (scary, right?) Five from LA area. Hope it works for me, and changes life quality of many others with cancer.

    Being an Ailurophile helps me to take it easy just like my furry friends, after the immediate shock that stage 4 brought with itself.

    -Best wishes

    Ailurophile

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2019
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    you sound in fine form dear friend of the furry purrers.

    This could be a very special drug trial indeed.

    Hug

  • Christmascarol
    Christmascarol Member Posts: 19
    edited February 2019
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    Ailurophile,

    So sorry to hear the news. You are one classy lady. In the middle of receiving this news, you are reaching out with information on a clinical trial to inform and possibly help others. Impressive character. I hope the trial is a resounding success. Xoxo

  • ailurophile
    ailurophile Member Posts: 124
    edited March 2019
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    Christmascarol, Thank you for your kind words! You are such a positive person and you only see the good in people💗

  • salamandra
    salamandra Member Posts: 736
    edited March 2019
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    Hi Ailurophile,

    I love the name too, and it applies to me, so very glad to learn it.

    I'm so sorry you have to deal with this! How lucky to be able to get on such a promising and restricted trial! I hope everything goes really well!

  • KBeee
    KBeee Member Posts: 695
    edited March 2019
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    Ailurpohile, I am so sorry to hear about the spot on your liver. I am glad you could get in on that trial. Thank you for sharing it.

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