IBC with mets to spine and liver

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meena1
meena1 Member Posts: 16
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi, i am new here.  I was originally diagnosed july 2008 with Ibc.  I had 12 weekly treatments of taxol, herceptin, and zometa.  Masectomy in Nov 2008, then rads.  I was decared NED for a few months.  Then, i was diagnosed with a reoccurance in June 2010 and I am back in chemo.  i just saw Dr Christafanelli today, he seems very aggresive.  If anyone has gone to him for treatment, please let me know your thoughts.  I also would like to know everyone and their treatment stories.  This is my 3rd new posts, only 1 person replied to each post.  I do not know if this is an active board or not.  I usually post on another board for breast cancer.

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

    Hi,

    I am IBC survivor.  I am sorry that you have spine & livers mets. I haven't been to MD for any treatment so I don't know anything about the doctor you are seeing.  I did check into it at the time of my diagnosis but they said I couldn't go to the IBC clinic because it wasn't mentioned in my records. I was really disappointed but I didn't want to delay treatment.  But given your situation, you are where I would want to go.

    My husband went there when he had cancer until they changed his doctor.  He didn't care for the new doctor.  He went to a great doc in KC and is now 5 years NED.

    This board is active but it is so massive that it spreads topics out pretty thin. 

    Your IBC friend, NJ

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  • NYmom60
    NYmom60 Member Posts: 44
    edited August 2010

    I was not treated by Dr. C, however his reputation is excellent. If you would like to speak with women who were patients of his, you can try joining the mailing list for ibcsupport.org and then email the list any questions you might have. There are several members of ibcsupport.org who were/are patients of his. 

    Sending hugs and prayers,

    Monika 

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  • germangal
    germangal Member Posts: 97
    edited August 2010

    There are any folks here who have been treated by, or consulted with, Dr. C (as we call him). He is indeed the most knowledgeable oncologist when it comes to IBC, having dedicated his professional career to understanding it and how it differs from other BC. My onc in Boston consulted with him when establishing my treatment plan (he was at MD Anderson in Houston, too far for me to travel at the time). Should I ever have a recurrence, I would gladly travel to Fox Chase in Philadelphia to be seen by him in his new position. BTW, I met Dr C at the opening of the IBC Clinic at Fox Chase - he is a very humble man who genuinely cares about his patients. That was quite evident in the way he hugged and spoke with those that had traveled across country to attend the opening.

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  • meena1
    meena1 Member Posts: 16
    edited August 2010

    Thank you for your responses.  I have posted on IBCsupport.  I believe that i will get the best treatment from him

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