CONTACTS 

SUBJECTS
White Blood Cell Condition Blood Test Shows Too Low Doctor Johnson A

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 77 0000. ref SDS 65 0000.
040502 -
040503 -
040504 -
040505 -
040507 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie met with Doctor Rugo yesterday and discussed results of CT test
040902 - on 090612, 090616 1245, ref SDS 77 JH48, and in order to start
040903 - treatment with MPA protocol to recover from 8th relapse of cancer,
040904 - 090616. ref SDS 77 YO4J
040906 -  ..
040907 - Millie sent the following letter to the medical team reporting results
040908 - of the meeting with Doctor Rugo yesterday on 090616 1245. ref SDS 77
040909 - TP9L
040910 -
040911 -    1.  Subject: MPA Treatment Started Everybody on Board
040912 -        Date: Wed, 17 Jun 2009 02:08:36 -0700
040934 -         ..
040935 -    2.  I met today with Doctor Rugo and her team at UCSF [on 090616
040936 -        1245, ref SDS 77 TP9L, After getting a punch biopsy [on 090616
040937 -        1000, ref SDS 74 PQ7T, and more blood work [on 090616 1145,
040938 -        ref SDS 76 TP9L, Doctor Rugo and Tara made an examination.
040939 -        They reported IBC disease has spread, since the last systemic
040940 -        treatment on 090122, and since completing radiation and
040941 -        hyperthermia on 090317, noted previously by Doctor Hsu during
040942 -        the meeting last week on 090609. ref SDS 67 EK8J
040944 -         ..
040945 -    3.  I then received a months supply of pills for the MPA treatment,
040946 -        which we have been discussing.  I return in two weeks on Monday
040947 -        090629 for follow up blood work to evaluate whether to increase
040948 -        the MPA dose.  Thereafter, we will resume regular Thursday
040949 -        morning meetings to continue work the past 3 years at UCSF
040950 -        under your supervision.
040952 -         ..
040953 -    4.  During the meeting today, Doctor Rugo asked for Kaiser's
040954 -        report, ref SDS 77 356G, on the CT test performed on 090612.
040955 -        ref SDS 70 02D6  She wanted to know if there has been
040956 -        progression of opaque "glass" nodules in the lungs, ref SDS 77
040957 -        YS4J, which you discussed on 090415, ref SDS 58 GT4M, for the
040958 -        prior test on 090413.  Recall that on 090609 Doctor Hsu was
040959 -        concerned that untreated IBC tumor in my chest may be causing
040960 -        fluid on my lungs, suggested by recent symptoms of heavy chest
040961 -        and shortness of breath.
040963 -         ..
040964 -    5.  Mike, the study Coordinator, called your office for the report.
040965 -        You typically submit CT test reports to me electronically using
040966 -        cut and paste with Kaiser's internal Knowledge Management email
040967 -        system.  For tests on Thursday or Friday, as here, we get the
040968 -        report from you on Tuesday or Wednesday, which then supports
040969 -        the Thursday meetings at UCSF.  Since today is Tuesday, there
040970 -        is no complaint of late submission.  Mike could not reach
040971 -        Arlette, so he called the Radiology Department in Walnut Creek,
040972 -        and was told the report is still not available.  Since you are
040973 -        on a well-deserved vacation this week, you could not be
040974 -        contacted to expedite efforts at Kaiser.
040976 -             ..
040977 -            [On 090617 0842 called Kaiser to coordinate getting
040978 -            radiology report submitted to UCSF for Millie's CT test on
040979 -            090612. ref SDS 78 NQ5G
040981 -             ..
040982 -            [On 090617 0842 at 0927 Al Hutchins, Manager of Radiology
040983 -            Reporting for Kaiser in Walnut Creek, apologized for 2-day
040984 -            delay sending the report to UCSF for Millie's test on
040985 -            090612; and seemed to concur that reports are required to
040986 -            be completed within 24 hours of tests. ref SDS 78 6U5F
040988 -             ..
040989 -            [On 090617 1637 Arlette at Kaiesr notifies Millie that
040990 -            report for the CT test on 090612 was submitted to UCSF via
040991 -            FAX on 090617, responding to Millie's letter to the medical
040992 -            team on 090617. ref SDS 79 UD5H
040994 -         ..
040995 -    6.  Doctor Rugo approved me starting treatment today without this
040996 -        test data.
040998 -         ..
040999 -    7.  Accordingly, by copy to Arlette, Katie, and to Doctor Davidson
041000 -        request collaboration tomorrow on how to get the report for the
041001 -        CT test on 090612 submitted to me and to Doctor Rugo (Mike) at
041002 -        UCSF.  Work at Kaiser to provide the CD for computer files was
041003 -        very effective.  Mike explained today that the CD files are
041004 -        being read by another team for another "study-related purpose,"
041005 -        and so Doctor Rugo still needs Kaiser's report to post the UCSF
041006 -        medical chart for the study.
041008 -         ..
041009 -    8.  Work today shows progress the past few months on your charge in
041010 -        February to treat my cancer as a chronic disease.  Doctor Rugo
041011 -        said today that "everybody is now board" moving forward to
041012 -        treat my 8th relapse of cancer. ref SDS 77 D647  She discussed
041013 -        proactive planning for next steps after MPA, indicating
041014 -        prospects of PARP protocols, among others [listed in 2nd
041015 -        opinion received on 090204 1747. ref SDS 27 9J6Y], and cited
041016 -        email with you on strategic decisions that lie ahead.
041017 -        ref SDS 77 KD6L  I am grateful beyond measure to have a great
041018 -        team with your leadership guiding us through big challenges.
041019 -
041020 -            [On 090716 2106 Millie notifies medical team that UCSF
041021 -            delayed starting Millie's treatment with PARP until
041022 -            September, because Millie suffered painful breathing that
041023 -            might be caused by MPA so this treatment ended before PARP
041024 -            protocol was ready in September. ref SDS 80 EE6P
041026 -             ..
041027 -            [On 090909 Doctor Johnson advised that his schedule had
041028 -            cleared to have enough time for reviewing treatment options
041029 -            submitted on 090326, and providing analysis comparing
041030 -            trade-offs in order to prescribe treatment with the best
041031 -            chance of being effective. ref SDS 81 VF60
041033 -             ..
041034 -            [On 090922 0810 Millie asks medical team about progress
041035 -            starting PARP, and review of other targeted therapies.
041036 -            ref SDS 82 NW6S
041038 -             ..
041039 -            [On 091027 0830 Doctor Johnson disclosed that there still
041040 -            has not been enough time to review follow on treatments for
041041 -            Millie, and that he has not heard from Doctor Rugo on
041042 -            UCSF's progress starting the PARP protocol. ref SDS 83 GN5G
041044 -             ..
041045 -            [On 100108 1618 UCSF notifies Kaiser that Millie cannot get
041046 -            treatment for cancer with PARP that includes a protocol for
041047 -            Carboplatin, because Millie's was previously treated with
041048 -            Carboplatin chemotherapy, and UCSF fails to compare
041049 -            trade-offs exercising discretion balancing Millie's medical
041050 -            necessity for life-saving treatment with PARP, which UCSF
041051 -            and Kaiser indicated on 090616 was the best choice for
041052 -            Millie to recover from life-threatening medical mistakes
041053 -            made by UCSF. ref SDS 84 FM5I
041055 -             ..
041056 -            [On 100112 0830 Doctor Johnson reviews published guidance
041057 -            on 2nd opinion PARP therapy targeted to treat Millie's
041058 -            cancer with triple negavie patient profile. ref SDS 85 N586
041060 -         ..
041061 -    9.  Looking forward to our meeting next week.
041063 -         ..
041064 -   10.  Thanks to all for excellent work.
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