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
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041055 -
041056 -
041057 -
041058 -
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0411 -