CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 2 5E5J.
040502 -
040503 -
040504 -
040505 -
040507 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - CT Test Frequency Change from 8 to 12 Weeks Clinical Trial Cetuximab
040902 -
040903 -
040904 - Millie sent a letter to Doctor Rugo at UCSF saying...
040905 -
040906 -    1.  Subject: Sore Subject CT Tests Reduce from 8 Weeks to 12 Weeks
040907 -        Date: Sun, 07 Oct 2007 06:09:32 -0700
040914 -         ..
040915 -    2.  Dear Doctor Rugo,
040917 -         ..
040918 -    3.  Brigid mentioned during examination on 070920 that you might be
040919 -        able to get approval for changing CT tests from 8 to 12 week
040920 -        intervals, more a quarterly schedule. ref SDS 2 5E5J  This
040921 -        would reduce costs, and also reduce wear and tear on my sore
040922 -        arm.  Catherine, my nurse in the Infusion Clinic, noticed this
040923 -        past Thursday on 071004 that my arm had still not recovered
040924 -        from difficulty (swelled, black and blue), ref SDS 4 DE62,
040925 -        finding a vein by the technician at Kaiser for the CT test on
040926 -        Sunday, 070930. ref SDS 3 615J
040927 -
040928 -            [On 071009 UCSF got approval from clinical trial sponsors
040929 -            to change frequency of CT tests from 8 to 12 weeks.
040930 -            ref SDS 6 I48R
040932 -         ..
040933 -    4.  Catherine explained more testing makes this "sore subject"
040934 -        worse because there is barely enough time to recover between
040935 -        tests 8 weeks apart.  She explained some tricks the infusion
040936 -        nurses use to minimize problems.  CT test technicians are
040937 -        careful and considerate at Kaiser, but they do not have the
040938 -        skill to avoid problems.  This past test took 3 or 4 needle
040939 -        pricks to finally make the infusion for the test.  Catherine
040940 -        also indicated that the port cannot be used for this procedure,
040941 -        so we are stuck with trying to use my one arm that is wearing
040942 -        out.
040944 -         ..
040945 -    5.  Fortunately, CT tests for several years all seem to show NED,
040946 -        so possibly there is justification to reduce the frequency of
040947 -        testing.
040948 -
040949 -
040950 -
0410 -

SUBJECTS
Default Null Subject Account for Blank Record

0503 -
050401 -  ..
050402 - Status Change HER2 Increase Treatments with Change in Standards
050403 -
050404 -
050405 -    6.  I attended a support group event last weekend.  An oncology
050406 -        doctor with Diablo Valley Medical Group advised there has been
050407 -        some change in standards assessing HER2 negative, which opens
050408 -        the door for some patients to expand treatments (Herceptin??).
050409 -        The doctor seemed to say that 2.0 has been the cut off, but
050410 -        this has been relaxed to 1.6?  I was originally tested on
050411 -        020304, and Doctor Johnson reported results as simply
050412 -        "negative" during a meeting at Kaiser on 020321. ref SDS 1 6Q6J
050413 -
050414 -            [On 081120 pathology reports Millie still triple negative
050415 -            on biopsy performed 081107 to test for status change,
050416 -            ref SDS 15 HR4F; however, the pathology does not present
050417 -            actual findings to support the conclusion, and further the
050418 -            criteria presented for evaluating HER2neu does not seem to
050419 -            correlate well with research today. ref SDS 15 LF4R
050421 -             ..
050422 -            [On 081202 1456 Kaiser submitted results of pathology for
050423 -            biopsy on 081107 showing HER2 neu FISH test = 1.1,
050424 -            ref SDS 17 FG5G, well below criteria for positive 2.0, and
050425 -            below change in criteria to 1.6 reported under
050426 -            consideration on 071007. ref SDS 5 S68T
050428 -         ..
050429 -    7.  There was supposedly a retest for status change using a biopsy
050430 -        2 years later on 040419 that also diagnosed IBC.  Doctor
050431 -        Johnson reported on 060711 that biopsy on 040419 found no
050432 -        change in status, but again diagnostic numbers have not been
050433 -        reviewed.  Is it worthwhile to check the actual numbers, or
050434 -        possibly to do another biopsy, or am I just whistling Dixie??
050435 -
050436 -            [On 071009 UCSF fails to respond; follow up inquiry
050437 -            submitted. ref SDS 6 I44U
050439 -             ..
050440 -            [On 071009 Doctor Rugo advises that UCSF continue to rely
050441 -            on HER2 negative standard at 2, i.e., there has been not
050442 -            change in criteria. ref SDS 6 HH4W
050444 -             ..
050445 -            [On 080207 the Doctor asks investigating status change to
050446 -            assess options for treating Millie's relapse. ref SDS 7
050447 -            6S6G; requests report on biopsy 040419. ref SDS 7 655G
050449 -             ..
050450 -            [On 080219 UCSF receives report for biopsy on 040419 and
050451 -            determines there is no change in Millie's triple negative
050452 -            status, which would increase treatment options. ref SDS 8
050453 -            VX6G
050455 -             ..
050456 -            [On 081016 letter to medical team confirms Doctor Rugo's
050457 -            request for Kaiser to biopsy of lymph node in left
050458 -            supraclavicular, and orders evaluation of triple negative
050459 -            to investigate expanding options to treat Millie's 5th
050460 -            relapse of IBC. ref SDS 9 J36R
050462 -             ..
050463 -            [On 081022 FNA biopsy performed at Kaiser to evaluate
050464 -            triple negative status. ref SDS 10 NZ5N
050466 -             ..
050467 -            [On 081023 FNA biopsy positive for breast cancer,
050468 -            ref SDS 11 4Q9Q; need to do core biopsy because lab says
050469 -            FNA biopsy does not produce enough material to check for
050470 -            status change. ref SDS 11 4Q5V
050472 -             ..
050473 -            [On 081119 Kaiser submits summary of final pathology
050474 -            report, ref SDS 13 5O8G, for the biopsy on 081107,
050475 -            ref SDS 12 496L, and it shows status is unchanged, still
050476 -            triple negative. ref SDS 13 UQ5P
050478 -             ..
050479 -            [On 081119 Millie asks Kaiser for pathology report on
050480 -            biopsy performed 081107 and reporting triple negative
050481 -            status unchanged; need to evaluate criteria in relation to
050482 -            notice today that criteria for HER2neu has changed.
050483 -            ref SDS 14 L34X
050485 -             ..
050486 -            [On 081120 Millie receives complete pathology report for
050487 -            biopsy on 081107, ref SDS 15 1E6K; presents criteria for
050488 -            determining status, ref SDS 15 LF9R, but does not present
050489 -            findings that support a conclusion of triple negative.
050490 -            ref SDS 15 QQ3K
050492 -             ..
050493 -            [On 081202 1038 Millie's letter to Kaiser, ref SDS 16 UV5I,
050494 -            asks Doctor Daamen for findings in pathology report for
050495 -            biopsy on 081107 that support conclusion of triple
050496 -            negative. ref SDS 16 GZ4P
050498 -             ..
050499 -            [On 081202 1456 Kaiser submitted results of pathology for
050500 -            biopsy on 081107 showing HER2 neu FISH test = 1.1,
050501 -            ref SDS 17 FG5G, well below criteria for positive 2.0, and
050502 -            below change in criteria to 1.6 reported under
050503 -            consideration on 071007. ref SDS 0 S68T
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0506 -