THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
rodwelch@pacbell.net


S U M M A R Y


DIARY: September 9, 2009 01:44 PM Wednesday; Rod Welch

Visit Doctor Johnson on Millie's next treatment.

1...Summary/Objective


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CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Doctor Johnson was in the cafeteria this afternoon.  Briefly
040902 - discussed Millie's next treatment.
040904 -  ..
040905 - Millie's blood counts dropped significantly this past week.
040907 -  ..
040908 - Reviewed patient history using 2 Neupogen treatments per week to
040909 - maintain blood levels.  Considered following options...
040910 -
040911 -        1.  Add a Neupogen treatment so Millie will 2 treatments this
040912 -            week, one tomorrow, and another on Friday.
040913 -
040914 -        2.  Add Neupogen treatment next week during the bye-week, when
040915 -            Millie will not get treatment.
040917 -             ..
040918 -        3.  Blood test next week and order Neupogen if blood counts are
040919 -            too low, so that Millie can get treatment starting the next
040920 -            cycle.
040922 -  ..
040923 - Doctor Johnson decided to order 2 Neupogen treatments this week.  He
040924 - will visit Millie and the nurse in the Chemotherapy Infusion Clinic to
040925 - explain change in treatment.
040926 -
040927 -        [On 090909 1330 Doctor Johnson met with Millie and Anne in the
040928 -        Chemotherapy Infusion Clinic and advised of the change in
040929 -        Neupogen prescription. ref SDS 10 YB7J
040931 -  ..
040932 - Doctor Johnson said he is worried that Millie's cancer marker
040933 - increased 10 points for the lab yesterday to CA 15-3 346.  He feels
040934 - this indicates progression of cancer that requires changing
040935 - treatments, shown by case study on 090323. ref SDS 3 J13O
040936 -
040937 -        [On 091028 0830 cancer marker drops 50 points CA 15-3 299
040938 -        indicating stable, and so buying the team another 4 - 8 weeks
040939 -        to find Millie's next treatment. ref SDS 13 GN4M
040941 -  ..
040942 - The doctor said the only treatment he has left at Kaiser is Navelbine.
040943 - He discussed Millie going back to UCSF.
040945 -  ..
040946 - We reviewed the call from Tara on 090716 saying Doctor Rugo sent a
040947 - letter to Doctor Johnson collaborating on treating Millie with PARP
040948 - beginning this month, and in order to recover from UCSF medical
040949 - mistakes. ref SDS 8 EE6P
040951 -  ..
040952 - Doctor Johnson recalled that at the meeting 2 weeks ago he reported
040953 - still not having received Doctor Rugo's letter coordinating Millie's
040954 - treatment at Kaiser to assist UCSF treatment for Millie to recover
040955 - from radiation medical mistakes.
040957 -  ..
040958 - Further reviewed today, the meeting with Doctor Rugo on 090616, saying
040959 - she had corresponded with Doctor Johnson on Kaiser and UCSF agreeing
040960 - that Millie's next treament would be PARP. ref SDS 7 KD6L
040962 -  ..
040963 - We discussed Millie's letter to the medical team on 090326,
040964 - ref SDS 4 DW5S, transmitting a 2nd opinion listing 10 or so "targeted"
040965 - treatments that may be effective for Millie's patient profile, and
040966 - shown in the record on 090204 1747. ref SDS 1 4R3S  PARP is one of the
040967 - treatments in the 2nd opinion. ref SDS 1 9J6Y
040969 -  ..
040970 - Millie's letter to the team on 090725, submitted published guidance on
040971 - standard of care for evidence based medical practice requiring the
040972 - doctor to compare trade-offs prioritizing treatments for results and
040973 - costs in terms of suffering, time, and money. ref SDS 9 T58U  Doctor
040974 - Rugo reported on 090616 that "everybody is on board" at Kaiser and
040975 - UCSF for treating Millie's cancer as a chronic disease, starting
040976 - first, with MPA. ref SDS 7 D647  She said that Kaiser and UCSF agreed
040977 - in a letter that after MPA, Millie's next treatment would be with
040978 - PARP. which targets Millie's triple negative status, like cetuximab.
040979 - ref SDS 7 KD6L
040981 -  ..
040982 - Standard of care for treating Millie's cancer as a chronic disease
040983 - still has not been performed for Millie's treatment after PARP.  There
040984 - is no record showing anyone has evaluated any of the other treatments,
040985 - including getting more radiation.
040987 -  ..
040988 - Doctor Johnson said he has time now to perform standard of care
040989 - reviewing results and costs in terms of suffering, time, and money for
040990 - treatments in the list submitted on 0900325.  In some cases, he has to
040991 - call principal investigators about Millie's eligibility to participate
040992 - in various studies.  The doctor is worried today that principle
040993 - investigators often want patients who do not have Millie's extensive
040994 - treatment history, listed on 090213. ref SDS 2 AC6G
040996 -  ..
040997 - UCSF solves this problem, because Doctor Rugo is the principle
040998 - investigator, and UCSF has a duty to perform in Millie's case.
041000 -  ..
041001 - Since UCSF caused the current problem, UCSF should do the primary
041002 - research to find the best evidence of effective treatment for Millie's
041003 - patient profile.  UCSF has an affirmative duty to fix their medical
041004 - mistake providing radiation services on referral from Kaiser, reported
041005 - by Doctor Hsu on 090609. ref SDS 5 W65W
041007 -  ..
041008 - On 090615, Mike, Doctor Rugo's coordinator for MPA, advised that the
041009 - doctor exercised discretion to provide Millie treatment in order to
041010 - recover from UCSF medical mistakes, despite variance with protocols.
041011 - ref SDS 6 EQ5H  Similarly, Doctor Rugo waived requirements to treat
041012 - Millie with sunitinib and cyclophosphmaide, despite Millie having been
041013 - treated twice previously with this cyclophosphmaide (Cytoxan), and
041014 - experienced progression of cancer both times.
041016 -  ..
041017 - UCSF has demonstrated that rigid protocols aimed solely at uniform
041018 - test results are subsidiary to providing timely treatment when the
041019 - evidence shows treatment with the primary agent is the best chance of
041020 - survival for the patient.
041022 -  ..
041023 - Doctor Johnson will notify Doctor Rugo that Gemzar is not working, and
041024 - ask about starting Millie with PARP or another agent.  The doctor does
041025 - not seem comfortable telling UCSF that if UCSF does not provide
041026 - timely, effective care for Millie to recover from UCSF medical
041027 - mistakes, then Kaiser will perform the work and charge UCSF.
041028 -
041029 -        [On 090922 0028 Millie's letter asks medical team for results
041030 -        of collaborating on prescribing Millie's next treatment,
041031 -        planned on 090616 to be PARP. ref SDS 11 NW6S
041033 -         ..
041034 -        [On 091027 0830 Doctor Johnson disclosed that there still has
041035 -        not been enough time to review follow on treatments for Millie,
041036 -        and that he has not heard from Doctor Rugo on UCSF's progress
041037 -        starting the PARP protocol. ref SDS 12 GN5G
041039 -         ..
041040 -        [On 091028 0830 cancer marker drops 50 points CA 15-3 299
041041 -        indicating stable, and so buying the team another 4 - 8 weeks
041042 -        to find Millie's next treatment. ref SDS 13 GN4M
041044 -         ..
041045 -        [On 100112 0830 Doctor Johnson reviews published guidance on
041046 -        2nd opinion PARP therapy targeted to treat Millie's cancer with
041047 -        triple negavie patient profile. ref SDS 14 N586
041049 -         ..
041050 -        [On 100502 2143 Kaiser reports that all of the strategies for
041051 -        "targeted" therapies have been executed for Millie, which seems
041052 -        conflicting with the record in this case. ref SDS 15 MZ4N
041053 -
041054 -
041055 -
041056 -
041057 -
041058 -
041059 -
041060 -
041061 -
041062 -
041063 -
0411 -