CONTACTS 

SUBJECTS
Diagnosis IBC Distant Metastasis Treatment Options 2nd Opinion Recei
IBC Diagnosis Treatment History Other Patients Options 2nd Opinion V
2nd Opinion Verify Scope of Problem and Treatment Planning Tumor Boa
2nd Opinion Requested from UCSF, Stanford, UC Davis Cancer Centers

1106 -
1106 -    ..
1107 - Summary/Objective
1108 -
110801 - Follow up ref SDS 2 0000, ref SDS 1 0000.
110802 -
110803 - Received ref DRT 1 0001 from Jeannie answering the question asking for
110804 - Jeannie's history that led to getting a 2nd opinion, which can help
110805 - Millie make this decision in her case, per our telecon yesterday.
110806 - ref SDS 2 RK93
110807 -
110808 -    1.  I was diagnosed in August of 1999.  I was a member of Kaiser
110809 -        then.  Kaiser contracted with Duke University Hospital.  For
110810 -        some reason the doc that diagnosed me sent me to another onc in
110811 -        Durham. (probably his golf buddy). Anyway, he was going to
110812 -        treat me with taxol and carboplatin or cisplatin (can't
110813 -        remember which).  I was just going to do whatever he said
110814 -        because I just did not want to make a decisions.  I just wanted
110815 -        to wake up and it would all be over. ref DRT 1 BO5M
110817 -  ..
110818 - This seems to be a common reaction of the patient becoming compliant
110819 - hoping the hospital will take effective action.
110821 -  ..
110822 - Jeannie contineus...
110823 -
110824 -    2.  One of my friends at work was a patient of Dr. Mark Graham at
110825 -        UNC Med School.  She called him and he called me and had me
110826 -        come over to UNC the next day.  They have a team approach at
110827 -        the Breast Center and you see all the docs-- surgeon, radiation
110828 -        onc, and regular onc.  Kaiser did not contract with UNC, so
110829 -        that was out of pocket.  Anyway, Mark said I should go to Duke,
110830 -        he would coordinate the treatment with the onc there.  He was
110831 -        looking for patients for  a clinical trial of
110832 -        adriamycin/cytoxan followed by herceptin/taxol.  So he wanted
110833 -        me to find out from Duke (where Kaiser would pay for
110834 -        everything) if I was her2neu positive.  her2neu is a protein on
110835 -        the surface of cells, and some cancer cells have extra
110836 -        molecules of the protein on the surface.  Herceptin recognizes
110837 -        those cells and attacks them.  It was the first genetically
110838 -        engineered antibody for cancer. Turned out I was positive.
110839 -        ref DRT 1 8O6K
110841 -  ..
110842 - Millie is her2/neu negative, reported on 020306.
110844 -  ..
110845 - Jeannie continues...
110846 -
110847 -    3.  Anyway, I took myself to Duke and started the treatment with
110848 -        A/C.  That was once every 3 weeks for 4 treatments, starting in
110849 -        August.  So that went through November. ref DRT 1 IO8G
110851 -         ..
110852 -    4.  Every October we (state employees) can change our insurer.  So
110853 -        I switched to the fee for service plan that October.  That gave
110854 -        me the option of using either Duke or UNC. ref DRT 1 TO8L
110856 -         ..
110857 -    5.  At the end of the AC, Duke was evaluating me for surgery.
110858 -        There was still a tumor in my breast, although shrunken. (I was
110859 -        dx IIIB- with CA in the axillary nodes).  And nodes were
110860 -        shrunken, but still there. ref DRT 1 5P9G
110862 -         ..
110863 -    6.  I wanted to be on Mark Graham's trial, so I switched to UNC in
110864 -        November. Duke was not all that excited about herceptin since
110865 -        both Adriamycin and herceptin can be heart toxic.  They cannot
110866 -        be given together, so this trail was to see if they can be
110867 -        given in sequence, not do too much damage to the heart, and see
110868 -        how effective the regime is.  So I was at UNC and had 12
110869 -        treatments of herceptin and taxol.  That ended at the end of
110870 -        January, and I had a modified radical mastectomy in February,
110871 -        2000. ref DRT 1 EP9L
110873 -         ..
110874 -    7.  Well, glory be, the tumor was dead and all 29 lymph nodes were
110875 -        clean.  I sorely miss the nodes, since I have mild lymphedema.
110876 -        But, the point is, the chemo destroyed the cancer in the lymph
110877 -        nodes.  And I had no significant heart damage.  Everyone was
110878 -        shocked and they actually did a grand rounds on me. ref DRT 1
110879 -        BQ4K
110880 -
110881 -            [On 060106 Millie preliminary diagnosis lymphedema, and
110882 -            research indicates this is serious, no cure. ref SDS 3 SS6K
110884 -         ..
110885 -    8.  The trial continued with radiation for 5 or 6 weeks, followed
110886 -        by 40 more rounds of herceptin weekly, with no taxol.  That was
110887 -        very easy. ref DRT 1 TQ5H
110889 -         ..
110890 -    9.  Since I did not want to get this dread disease again, I had a
110891 -        simple mastectomy on the left side in Feb of 01. ref DRT 1 4R5L
110893 -         ..
110894 -   10.  Then I got sick of prostheses, and had reconstruction with just
110895 -        the skin and fat from my abdomen done in October of 02.  That
110896 -        was a great idea, as there is no collateral damage. ref DRT 1
110897 -        QR6F
110899 -         ..
110900 -   11.  So, points of all this is:, ref DRT 1 5S6K
110902 -         ..
110903 -   12.  The 3 places I went had 3 different treatments.  I had to take
110904 -        the initiative to decide to go for the most aggressive plan.
110905 -        Chemo can kill the cancer- really kill it.  Before taxol was
110906 -        invented there was very little hope with IBC. ref DRT 1 JS6N
110908 -         ..
110909 -        It is possible to recover and live a normal HEALTHY not in
110910 -        treatment life. I have almost forgotten that all this really
110911 -        happened.  Just have the lymphedema to remind me. If one drug
110912 -        regime loses its effectiveness, switch to another.  It does not
110913 -        mean it is all over. ref DRT 1 ST3I
110914 -
110915 -            [On 060106 Millie preliminary diagnosis lymphedema, and
110916 -            research indicates this is serious, no cure. ref SDS 3 SS6K
110918 -         ..
110919 -   13.  So, any more questions, please email me.  I hope all goes well
110920 -        for you, Millie. ref DRT 1 LU3O
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