Looking to connect with IBC Triple Negative patients

Marisol03
Marisol03 Member Posts: 1
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello everyone. Hope you are all doing well. I know all too well the journey with IBC is long but it's comforting to know that i can reach out to you. I started out with chemo and I am half way through next will be surgery in July.  I was wondering if anyone can share their stories on the options they considered with surgery, experience with Taxol and how in general what your experience has been. 

I have met many people with triple negative diagnosis but not IBC triple negative. Looking forward to connecting with all of you.

Take care!

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  • rosebyanyothername
    rosebyanyothername Member Posts: 7
    edited June 2013

    hi marisol,   my initial diagnosis   was tnibc.     after chemo and my mast.   when the pathology was done,   it was found that the tumor itself was  tn    what was left  in the surrounding tissue was e+.    i didnot have alot of choices presented to me nd since i was pretty much in shock  i went with the program since i guess tnibc has its   designated treatment almost.  at least now that is what i choose to believe.       hope you are doing well  with your treatment  .

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  • Mercy5nj
    Mercy5nj Member Posts: 24
    edited November 2013


    Hi Marisol I am 48 years old and recent was diagnose with IBC in early September. I am presently, having chemo going on 6th treatment next week. (Taxol) . I am stage IV with mets in bone and triple negative.


    I am waiting for my gene testing to see if I have the gene or not. According to the doctor that helps with treatment. Ask your doctor about PARP inhibitors is a new research treatment for us . This website has information about it . Since I post this after the fact what treatmentare you getting now? With taxol I get it once a week and. Of course your hair is gone, I get some joint pains occasionally but, no nausea as yet. I hope things don't get worse I just finish my 6 Th treatment .


    The best wishes too you I hope you are feeling fine.


    Thank you,


    Mercy NJ

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  • tae
    tae Member Posts: 16
    edited November 2013


    I was dx'd with Triple Negative IBC in July. Just completed my 8 rounds (4 of AC, and 4 of Taxol) last Wednesday, Oct. 30. My bilateral mastectomy (health breast, my choice) with axillary dissection is on November 19 (2 weeks from yesterday). I'm doing well, all things considering. Praying for an uneventful surgery. Unfortunately, due to the holidays, I won't start radiation until the end of December unless I can find another place to have it. Our nearest radiation oncology department is already an hour away, and I'd likely have to go an additional 3 hours to start it any earlier than that. Anyway, that is a question, but this is just to connect with others. God is with me.

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited November 2013


    Hi Marisol, I hope you are doing well. I am ibc-tn. I am almost 6 years out from my dx. It was a hard journey at first but I am doing well now. NJ.

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  • Mercy5nj
    Mercy5nj Member Posts: 24
    edited November 2013


    Hello Mrsnjband:


    You give me lots hope I am so, happy to know you have pass the five year mark ! And many more to come. God bless! I just found out that I don't care carry the gene. I think it would be best for me to do the bilateral mastectomy, since our cancer has a high recurrence.


    Regards


    Mercy

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  • Pamiam45
    Pamiam45 Member Posts: 8
    edited November 2013


    Hi there,


    I had TN IBC 18 years ago while I was pregnant. I had 3 rounds of chemo while pregnant, 3 after, then radiation. In 2010 I was diagnosed with DCIS in my other breast, again TN...fun times!


    I'm doing great now, ready for reconstruction!


    Hope you are doing well,


    Pam:)

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