Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) — Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 06:23PM

Posted on: Mar 31, 2016 06:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/22/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Mar 28, 2018 11:53PM sbelizabeth wrote:

Dancing Diva, yeah, although my sis was HER+ and I was not. Our half-sister had breast cancer too, but not IBC.

We offered tumor samples to MD Anderson's IBC clinic if they might be interested from a research perspective, but they said no thanks.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy; Mastectomy (Left) Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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Mar 29, 2018 07:09PM - edited Mar 29, 2018 07:44PM by amarantha

Hello everybody. Well, I'm kind of wondering how this is going to go down. Since my first IBC diagnosis in 2013, it returned in end 2016, has now spread to bones and lymph nodes and skin, and has now entirely taken over my remaining breast. The chemo I'm taking is eribulen - Halaven, it is working to reduce the ganglions (lymph nodes), but not stopping the spread and worsening of my right breast. We just had biopsies to determine the exact profile of what is in the right breast but it is clearly still IBC, the lack of clear lump, the thickened skin, the hardened tissue inside the breast - made it almost impossible for them to do the biopsies (I almost wrote autopsy) they had to push the needle thing super hard to get it through the cardboard like tissue. I'm guess I'm wondering where they can possibly go from here. I couldn't get any kind of hypothetical possibilities out of the intern I saw today. Where can we possibly go ? Is there anything left to try ? Ideas ?

Editing to add : here are all the things I have already had :

-After first diagnosis (end 2013):CEF; Taxotere (docetaxel); Carboplatin (Paraplatin), Taxol (paclitaxel), Cisplatin combined with radiation; radiation, mastectomy, tamoxifen.

-Since recurrence (end 2016) Afinitor/Aromasine; Ibrance/Faslodex; Halaven (current)

Editing agin to add: no hypothetical possibilities can be thought of or shared until the results of the biopsies come in, 2 or 3 weeks or longer. (Don't we hate waiting?)

    IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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    Mar 29, 2018 07:14PM traveltext wrote:

    I'm very sorry to hear this amarantha. I don't have any answers, but would you mind if I shared your post with my IBC connections? Then I could pass on any responses I get.


    NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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    Mar 29, 2018 07:38PM amarantha wrote:

    Why certainly, please do. I am going to edit it to add all the chemo I previously had.

    IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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    Mar 29, 2018 09:03PM traveltext wrote:

    I've started the enquiries based on your revised text and bearing in mind the results of the biopsies are yet to come in.


    NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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    Mar 29, 2018 09:10PM sbelizabeth wrote:

    Amarantha, I don't have any answers either, but I'm reaching way across the continent, and the pond, to hold your hand. I'm sorry you're navigating through this crapalactic mess!

    There's an IBC clinic at MD Anderson in Texas. I don't know if they do international consults, via phone or FaceTime, but it's a thought.

    Gentle hugs--SB

    pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy; Mastectomy (Left) Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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    Mar 30, 2018 02:46PM - edited Mar 30, 2018 02:50PM by amarantha

    Traveltext and sbelizabeth, thank you very much for reading and responding to my "crapalactic mess" - hahaha. I'm halfway appeased just to have the response. I'll see if I can contact the IBC clinic, interesting that there is a clinic devoted to this one thing. Many thank yous.

    Editing to add : I see that on the MD Anderson center there is a trial for metastasic IBC patients to see if the combination of Atezolizumab, Cobimetinib, Eribulin is helpful. I'm already on Eribulin, I'll look up what the others are. I hope the combination shows promise.

    IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink
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    Mar 30, 2018 03:10PM traveltext wrote:

    Amarantha, the women I've contacted is the leading patient advocate for IBC and she is also very involved with the MD Anderson IBC unit. Will let you know when I hear back from her again. Hang in there!


    NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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    Apr 2, 2018 05:26AM moreshoes wrote:

    Amarantha, I'm really sorry this is happening. It's not fair. Hopefully you can get help from MD Anderson.

    Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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    Apr 2, 2018 06:50AM amarantha wrote:

    Thank you MoreShoes (ha, like shoes, eh?)

    Really I'm just looking for some predictions - I mean of treatment. I feel I am in superb hands, but the waiting for results is killing me, and I'm trying to prepare myself by getting an idea of what treatments are now possible. Understandably they won't share any hypotheticals with me, however I wanted to hear 'if such is true, then we'll do X, but if such is true, then we can do Y" -- Just trying to prepare myself, you know how it is ?

    IBC metastasic, ER+. Tx: Gezmar, Decadron. Past txx : Xeloda, Halaven, Cisplatin, Afinitor/Aromasine, Ibrance/Faslodex, Tamoxifen, mastectomy x 2, chemo-radiation with Cisplatin x 2, CEF, Taxotere, Carboplatin, + the kitchen sink

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