CONTACTS 

SUBJECTS
IBC Photographs Treatment with Cetuximab Carboplatin 2 Weeks After 1

0603 -
0603 -    ..
0604 - Summary/Objective
0605 -
060501 - Follow up ref SDS 13 NV4M.
060502 -
060503 -
060504 -
060505 -
060507 -  ..
0606 -
0607 -
0608 - Progress
0609 -
060901 - On 080109 UCSF was asked to review photographs showing initial
060902 - condition begining 070201, ref SDS 2 6T6M, and compare with the most
060903 - recent condition in order to assess progression of disease.
060904 - ref SDS 5 4P8N  UCSF was asked to prepare a narrative explanation of
060905 - changes in patient condition to evaluate changing treatment by adding
060906 - Carboplatin to cetuximab. ref SDS 5 4P9K
060908 -  ..
060909 - During the meeting the next day on 080110, UCSF took new photographs.
060910 - There was not enough time to compare with prior photographs in the
060911 - Medical Chart, as requested on 080109, and submit a narrative
060912 - analysing progression of disease. ref SDS 6 BF60
060914 -  ..
060915 - On 080207 UCSF reported pictures for baseline on 070201 were lost.
060916 - UCSF had technical problems that prevented displaying patient history
060917 - of photographic evidence on the computer for the patient to observe;
060918 - Jackie, Brigid, Amy, and Doctor Rugo tried to review pictures that
060919 - were available in another room where the patient could not see what
060920 - was shown; UCSF did not produce a report on these findings.
060921 - ref SDS 7 GH57
060923 -  ..
060924 - Impression from examination at UCSF on 080207 showed possible
060925 - progression of disease. ref SDS 7 GH5H
060927 -  ..
060928 - On 080208 letter to UCSF requested again copies of pictures for
060929 - diagnostic evaluation to assess progression of disease, and so there
060930 - is a secure record, and to facilitate assessment of changing
060931 - treatment. ref SDS 8 OO8Y
060933 -  ..
060934 - On 080213 another letter requests again pictures taken for evaluation
060935 - of IBC disease. ref SDS 9 7G9P
060937 -  ..
060938 - On 080214 Jackie reported the doctor is checking with clinical trial
060939 - management for permission to release patient history to the patient
060940 - for evaluating progression of disease. ref SDS 10 N94Q
060942 -  ..
060943 - On 080214 another letter confirmed request for copies of photographic
060944 - evidence to assess progression of disease, ref SDS 10 VX8V, and
060945 - requested for photographic patient history for distribution to primary
060946 - care physician to facilitate diagnosis and secure the record against
060947 - further loss of critical patient history. ref SDS 10 VX8Y  Millie's
060948 - follow up letter thanks UCSF for working on sending patient history of
060949 - photographs from the medical chart to the patient. ref SDS 10 4R5O
060951 -  ..
060952 - The letter to UCSF on 080219 reports evident subsidence of IBC rash
060953 - prior to starting treatment with Carboplatin added to cetuximab.
060954 - ref SDS 11 1K9W
060956 -  ..
060957 - On 080219 meeting with the doctor revealed concerns about releasing
060958 - patient history to the patient showing photographic evidence on
060959 - progression of IBC disease. ref SDS 12 I34M  The doctor proposed UCSF
060960 - will release the pictures used to evaluate progerssion of disease,
060961 - when Millie begins treatment with Carboplatin. ref SDS 12 KH5M
060963 -  ..
060964 - On 080306 UCSF took pictures to start a new baseline condition prior
060965 - to starting treatment with cetuximab and adding Carboplatin.
060966 - ref SDS 13 814N
060968 -  ..
060969 - UCSF has been reluctant to submit photographs.
060971 -  ..
060972 - On 080313 Millie had the first treatment with cetuximab and
060973 - Carboplatin. ref SDS 14 TZ8I as shown in the chemotherapy order issued
060974 - by the doctor. ref SDS 14 4E9N
060976 -  ..
060977 - Today, took pictures using Millie's camera to record status of disease
060978 - after 1 treatment on 080313 with cetuximab and adding Carboplatin.
060980 -  ..
060981 - This is poor management introducing a second set of photographic
060982 - evidence of IBC progression, because it creates dual data sets with
060983 - stakeholders blind to data others are observing.
060984 -
060985 -             
060986 -
060987 -    1.  Right breast shows improvement.  Previously, IBC was a solid
060988 -        continuous rash.  The photograph today shows this rash has
060989 -        begun to "break up" and is no longer continuously intense.
060991 -         ..
060992 -    2.  Breastbone shows markedly reduced intensity compared to a few
060993 -        months ago.  This continues improvement reported on 080219.
060994 -        ref SDS 11 1K9W
060996 -         ..
060997 -    3.  Area below left chest wrapping down and toward the back seems
060998 -        stable with progression of disease since starting treatment on
060999 -        070201, and contributing to requirement for expanding
061000 -        treatment, but no increase in the past month or so.
061002 -         ..
061003 -    4.  Large patch now about 3" by 1" on left center abdomen (stomach)
061004 -        has increased perhaps 3 times since starting treatment on
061005 -        070201.  Examination the day before on 070131 described only
061006 -        light sprinkles of isolated dots on the stomach. ref SDS 1 M68J
061007 -        On 070426 examination reported IBC rash on the stomach had
061008 -        seemed to disappear. ref SDS 4 Q653, showing strong response to
061009 -        treatment, but returned possibly in October, and has grown for
061010 -        several months into a continuous rash.  Has seemed fairly
061011 -        stable for several months, and today seems less intense than 2
061012 -        months ago, continuing improvement reported on 080219.
061013 -        ref SDS 11 1K9W
061014 -
061015 -             
061017 -         ..
061018 -    5.  Left arm shows progression of disease since first diagnosed at
061019 -        UCSF on 070222, ref SDS 3 B64F, but markedly less disease at
061020 -        this time compared to 2 months ago, except a single small, but
061021 -        intense area near the top of the rash closest to the shoulder,
061022 -        which remains quite intense (dark).
061023 -
061024 -             
061026 -         ..
061027 -    6.  Left side 1/3 between shoulder and hip - 2 small areas, perhaps
061028 -        .5" x .2" each.  One is very light intensity; the other is more
061029 -        intense, with appearance of IBC disease.  Doctor Rugo pointed
061030 -        out IBC areas during the examination on 070130. ref SDS 1 M68J
061031 -        Examination on 070426 indicated IBC rash on the side and back
061032 -        and essentially disappeared. ref SDS 4 Q653  Therefore, these
061033 -        seem like new IBC sites.
061035 -         ..
061036 -    7.  Left side about 6 inches above the hip - 2 distinct dots one
061037 -        about .25" and other smaller and about .75" apart.  These seem
061038 -        new.
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0611 -