MY RECURRENCE IS IBM UNLIKE THE LAST ONE

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sumaiamhmd
sumaiamhmd Member Posts: 9
edited June 2014 in IBC (Inflammatory Breast Cancer)
  HELLO LADIES      ..... Iam asudanese black woman dx with IDC last year i had chemo TCH  protocole + bilateral mastectomy + radiation + herceptin for ayear . just finished my treat ment when inotice alump near the scar of my right breast after taking piobcy  + CT + PET SCAN  the result was local recurrence no mets ...so   this time it is inflammatory because initialy  my skin was involved but unfotionatly thy didnt recognise it as IBC my doctors i think treated me as IDC  only now im on XELODA and radiation  for the second time in only 7 months it  is growing rapidly towards my shoulder and im scared to death .... woud u mind helping me here  i have posted twise before and iwas totally neglected ... why is that because im not american may be ....please respond if any of u have asimilar case what is the recent treatment if any ?????
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  • sheila888
    sheila888 Member Posts: 25,634
    edited August 2010

    Hi Sumaia....I do not have a similar case. Just wanted to wish you good luck.

    Hugs to you.

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited August 2010

    Sumaia, I'm sure that it has nothing to do with the fact that you are not American.  There are lots of women here from other countries, I myself am from Canada.  I think it is like Seyla said, maybe not too many on these boards have a similar case.  But, I am sure that you will find support and friendship here. 

    I wish you good luck too.  What you are going through does sound scary, hopefully your medical team can address this situation and give you some peace.  Take care.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited August 2010

    Also keep in mind there is a 8 hour time difference between 2 countries.

    Thats for East coast of USA.

    People that they are at West Coast 11 hour difference.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2010

    Hi Sumaia,

    I don't know anythng about skin mets, but if you're gettng treatment and they're growing and you're scared, you should speak to your doctor and ask what's going on It might be that a you'll be switched to a new treatment regimen.

    Best of luck.

    Leah

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited August 2010

    Sumaia--ibc is rare but there is info out there for you.  Google ibc and find many sites which will offer you help like:  ibchelp.org, ibcsupport.org, & ibcresearch.org.  Of course we will answer what we can here.  Try to find a patient advocate where you are being treated to help direct you in treatments and doctors that are experienced with this.  We all understand your anxiety as we have been there.  Good Luck with your treatments. 

    Terri

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited August 2010

    I have skin mets that came back while I was on chemo: avastin and abraxane.  so we switched chemo--to xeloda and Ixempra and it seemed to lessen the color of the mets but didn't take it away.  Mine is at my sternum and in my radiation field spreading down my abd and around my back.  There is a drug called "miltex" that is a cream especially for skin mets BUT it is from Germany and is difficult to get.  I have heard that it can break open and get ugly and I'm praying that doesn't happen.  

    As to no one answering you, it depends on what forum you post.....I only look at the IBC and stage IV forums.

    Hang in there

    ps- as to radiation, it only temporarily helps....or so I've been told  

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  • sumaiamhmd
    sumaiamhmd Member Posts: 9
    edited August 2010

       ooooh      THANK YOU  ladies for all your answers they are of great help.... and Gg08- Bonnie u r such aperson with your all posts u  see how many persons u helped over there,,,,,waaaawwww u r inspiration GOD PLESS U .

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited August 2010

    Just seeing your post & hoping you are doing well.

    Love & prayers. NJ

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