CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 28 0000. ref SDS 27 0000.
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie notified the medical team on Sunday night that side effects of
040902 - radiation treatment which ended on 090317 continued to be serious
040903 - problem.  On Monday, Doctor Hsu scheduled a meeting for yesterday
040904 - morning on 090609 0900 at UCSF Radiology Oncology.
040906 -  ..
040907 - Yesterday, on 090609 0900 Millie met with Doctor Hsu, as requested.
040909 -  ..
040910 - The doctor made preliminary findings that IBC in the breastbone area
040911 - was not treated with radiation and hyperthermia, contrary to treatment
040912 - ordered by Doctor Rugo and authorized on referral by Kaiser.
040914 -  ..
040915 - This appears to be a medical mistake.
040917 -  ..
040918 - Doctor Hsu advised that Millie's recent breathing problems with cough,
040919 - heavy chest, and shortnes of breath, especially hiking are caused by
040920 - buildup in the lungs resulting from progression of IBC that was not
040921 - treated during the Feb-Mar radiation and hyperthermia program.
040922 - ref SDS 16 EK8J  Allowing IBC to go untreated for 6 months has enabled
040923 - spread of disease, reported initially to the medcal team on 090331
040924 - 2047. ref SDS 5 Q69V, Another concern is that UCSF over-radiated the
040925 - lungs while treating IBC outside the breastbone area, shown in the
040926 - radiation treatment plan received from UCSF on 090226 1342.
040927 - ref SDS 4 D452  Doctor Hsu advised that the best course of treatment
040928 - for Millie to recover is with the MPA protocol in the Breast Care
040929 - Clinic, ref SDS 16 1P42, proposed by Doctor Rugo to Kaiser on 090514.
040930 - ref SDS 11 D647
040932 -  ..
040933 - Doctor Hsu requested a CT test to determine if Millie has fluid on
040934 - the lungs and whether if so, it is mild enough to still permit
040935 - treatment with MPA.
040937 -  ..
040938 - In the afternoon, after returning home from UCSF in San Francisco,
040939 - Millie called Arlette at Kaiser in Walnut Creek, and asked Arlette to
040940 - facilitate a telecon with Doctor Johson in order to report Doctor
040941 - Hsu's findings, and request the CT test. ref SDS 17 MW5H
040943 -  ..
040944 - A few hours later on 090609 1430 Doctor Johnson called. ref SDS 18
040945 - MW5H
040947 -  ..
040948 - Doctor Johnson ordered the CT test requested by Doctor Hsu.
040949 - ref SDS 18 PPVY
040951 -  ..
040952 - Early this morning 090610 0043, Millie sent a letter to the medical
040953 - team confirming understandings, ref SDS 20 N630, from meeting with
040954 - Doctor Hus at UCSF the day before on 090609 0900. ref SDS 16 TP9L
040956 -  ..
040957 - Millie's letter explained Doctor Hsu requested a CT test to plan the
040958 - next treatment for Millie with MPA, ref SDS 20 W66W, and further
040959 - reported that Kaiser scheduled the test on 09612 1120. ref SDS 20 W67P
040961 -  ..
040962 - This afternoon, Doctor Rugo's assistant, Mike, called and advised that
040963 - Doctor Rugo wants the computer files for the CT test, ref SDS 21 S537,
040964 - to directly review evaluating Millie getting treatment with MPA, and
040965 - Mike also requested a report on the blood test on 090602. ref SDS 13
040966 - OT8J
040968 -  ..
040969 - After Mike's call, Millie received a letter from Doctor Hsu responding
040970 - to Millie's letter earlier this morning on 090610 0043. ref SDS 20
040971 - W66T  Doctor Hsu confirmed request in the meeting yesterday at UCSF on
040972 - 090609 0900, for a CT test, and to treat Millie initially with
040973 - systemic cancer care using the MPA protocol, ref SDS 22 G63H, to
040974 - recover from the medical mistake failing to treat IBC with radiation
040975 - on the vertical line in the breastbone area, ref SDS 16 TP9L, as
040976 - explained in Millie's letter to the medical team on 090510.
040978 -  ..
040979 - Millie sent a letter to the medical team confirming planning and
040980 - progress on starting MPA treatment; she submitted the report for the
040981 - blood test at Kaiser on 090602, ref SDS 23 9F4J, and requested
040982 - assistance on getting the CD for the CT test scheduled on 090612 1120
040983 - at Kaiser for submission to Doctor Rugo at Kaiser. ref SDS 23 TG8U
040985 -  ..
040986 - Millie received a letter from Doctor Davidson, Director of Radiology
040987 - for the Kaiser Diablo Service Region, responding to Millie's letter an
040988 - hour ago on 090610 1503 requesting assistance getting the CD for the
040989 - CT test scheduled on 090612 1120 at Kaiser for submission to Doctor
040990 - Rugo at UCSF to evaluate Millie's treatment with MPA protocol to
040991 - recover from medical mistake UCSF made providing radiation services on
040992 - referral from Kaiser during February and March, and which caused
040993 - severe progression of Millie's cancer, ref SDS 23 TG8U, as reported in
040994 - Doctor Davidson's letter received 30 minutes ago on 090610 1610.
040995 - ref SDS 24 TH5G
040997 -  ..
040998 - Drove to Kaiser in Walnut Creek.
041000 -  ..
041001 - Went to the CT Test Department in the basement of the hospital after
041002 - meeting with Arlette in the Oncology Department on the 2nd floor to
041003 - arrange for the Chemotherapy Infusion Clinic to access Millie's Power
041004 - Port to support the CT test on 090612 1120, and while Millie went into
041005 - the Radilogy customer check-in lobby to order the CD, ref SDS 25 2X6J,
041006 - which Doctor Rugo needs for the CT test on Friday, 090612 1120, and
041007 - which was requested in Mike's call this afternoon, ref SDS 21 S537,
041008 - and confirmed in Millie's letter to the medical team a little later on
041009 - 090610 1530. ref SDS 23 TG7R
041011 -  ..
041012 - After arranging for the Chemotherapy Infusion Clinic to access
041013 - Millie's port to get the CT test on Friday, reported on 090610 1643,
041014 - ref SDS 26 2X72, and after coordinating to get the CD of the computer
041015 - files for the test the same day, rather than wait 3-business days,
041016 - reported 090610 1713, ref SDS 27 UQ87, and further after asking about
041017 - consolidating findings for the test in a single report, also 090610
041018 - 1713, ref SDS 27 NM9W, Millie then visited Nora in Interventional
041019 - Radiology Services on 090610 1734, to schedule an IS nurse to support
041020 - Millie's CT test on 090612 1120. ref SDS 28 7L9I
041022 -  ..
041023 - Millie sent a letter confirming work plan for starting MPA protocol
041024 - treat 8the relapse of cancer...
041025 -
041026 -    1.  Subject: CT Test Jun 12 CD Scans for UCSF Gemzar Deferred Pending MPA Treatment
041027 -        Date: Wed, 10 Jun 2009 23:08:50 -0700
041043 -         ..
041044 -    2.  Thank for your letter today at 0232p confirming UCSF plans for
041045 -        recovering from IBC progression [reported received 090610 1443,
041046 -        ref SDS 22 G63H], diagnosed during the meeting in your office
041047 -        at UCSF yesterday on 090609 0900, ref SDS 16 TP9L, and as set
041048 -        out in my letter to the medical team late last night on 090610
041049 -        0043. ref SDS 20 N630
041051 -         ..
041052 -    3.  Your advice in the meeting yesterday [on 090609 0900,
041053 -        ref SDS 16 W66W], and confirmed in your letter today saying
041054 -        that UCSF's first effort will be to treat me with Doctor Rugo's
041055 -        MPA protocol [on 090610 1443, ref SDS 22 G63H], pending results
041056 -        of the CT test on Friday is a big relief.  Emotionally, I can
041057 -        soldier on to the "next step," as you recommend. ref SDS 22
041058 -        G63H  UCSF documentation shows MPA is "targeted" to my patient
041059 -        profile ER- [reported on, 090514 0830, ref SDS 11 CT9K], and it
041060 -        has very mild side effects, with essentially no impact on blood
041061 -        counts [see again, ref SDS 11 KV9T], which is otherwise a big
041062 -        problem for me [see case study patient history on 080918,
041063 -        080918 0900, ref SDS 3 OK67].  Thus, documentation in the
041064 -        record indicates MPA is a good treatment for my patient
041065 -        profile.
041067 -         ..
041068 -    4.  Doctor Rugo's assistant, Mike, called this afternoon and
041069 -        advised that the doctor needs the computer file for the CT test
041070 -        on Friday [on 090610 1438, ref SDS 21 S537].  I sent a letter
041071 -        to Kaiser at 0312p requesting support for Doctor Rugo's review.
041072 -        (reported on 090610 1509, ref SDS 23 TG7R].  Doctor Davidson
041073 -        responded immediately with instructions for getting a CD.
041074 -        (090610 1610, ref SDS 24 TH5G].  Thanks for timely follow up.
041075 -
041076 -            [On 090706 0301 Millie received a letter from Mike, Doctor
041077 -            Rugo's coordinator, saying his investigation discovered
041078 -            that nobody at UCSF ordered review of Millie's CT test scan
041079 -            files, ref SDS 33 1L6N, which were same-day hand- delivered
041080 -            to UCSF on 090612, ref SDS 32 UD5H, per Mike's request on
041081 -            090610 for timely review by UCSF. ref SDS 21 S537
041083 -         ..
041084 -    5.  I drove to Kaiser in the late afternoon about 0420p, and signed
041085 -        documents for getting a CD [reported on 090610 1640,
041086 -        ref SDS 25 2X6J], as explained by Doctor Davidson.
041088 -         ..
041089 -    6.  Ricardo at the front desk in the CT department noticed in the
041090 -        Kaiser computer that Loretta had not scheduled a nurse from IS
041091 -        to support the test [reported on 090610 1713, ref SDS 27 NM9W],
041092 -        required by Kaiser protocols.  I then visited with Nora in the
041093 -        IS Department, and she added me to the schedule for a nurse to
041094 -        support the CT test on Friday at 1120 [reported on 090610 1734,
041095 -        ref SDS 28 9W9J]].
041097 -         ..
041098 -    7.  Ricardo also arranged with the File Department in Radiology to
041099 -        prepare a CD the same day as the test [reported on 090610 1713,
041100 -        ref SDS 27 UQ87].  After the test, which now only takes about
041101 -        20 minutes using my Power Port, I will have lunch and then
041102 -        pickup the CD, rather than wait 3-business days, which the nice
041103 -        lady in the Radiology Customer Office said was required.  I can
041104 -        then drive to the City and deliver the CD to the Breast Care
041105 -        Clinic so Doctor Rugo can make timely review at her
041106 -        convenience.
041108 -         ..
041109 -    8.  Ricardo further gave an alert today that there is nothing in
041110 -        Kaiser's work order to consolidate findings for the CT test
041111 -        into a single report [see again on 090610 1713, ref SDS 27
041112 -        NM9W].  Doctor Davidson's letter on 090409 advised that
041113 -        reporting on future CT tests will consolidate findings for
041114 -        clarity that avoids confusion and error. ref SDS 8 XZ6U
041116 -         ..
041117 -    9.  By copy to Katie Garcia, request notice to the test analyst
041118 -        department to implement policy on consolidating findings for my
041119 -        CT test on 090612.
041121 -         ..
041122 -   10.  Rod visited with Arlette in the Oncology Department on the 2nd
041123 -        floor.  Arlette said that the Chemotherapy Infusion Clinic was
041124 -        closed, but she went in and scheduled a nurse to access my port
041125 -        for the CT test on 090612 Friday. [reported on 090610 1643,
041126 -        ref SDS 26 2X72].  The clinic had been called 3 times this week
041127 -        requesting to schedule port access between 1000 and 1100 on
041128 -        Friday in time for the test at 1120 in the CT Department.
041129 -        Thank God for Arlette.
041130 -
041131 -            [On 090612 1030 turns out Kathi does not work on Fridays,
041132 -            and Florida was assigned to access Millie's Power Port for
041133 -            the CT test at 1120; but, there is no order in the computer
041134 -            for the Infusion Clinic to access Millie's Power Port for
041135 -            the CT test, because this was scheduled for yesterday on
041136 -            090611 1400 for Millie to get Gemzar, which was canceled;
041137 -            however; Florida does not have credenitals to access
041138 -            Millie's Power Port, so Barbi did the work. ref SDS 31 PQRQ
041140 -         ..
041141 -   11.  Rod also conveyed my instructions to Arlette that Gemzar
041142 -        treatment scheduled for tomorrow at 0200p is deferred pending
041143 -        the CT test on Friday and UCSF review of treatment plans for
041144 -        MPA to recover from IBC discussed with Doctor Hsu yesterday [to
041145 -        recover from UCSF medical mistakes that caused cancer to
041146 -        spread, reported on 090609 0900, ref SDS 16 W65W], and noted in
041147 -        his letter today, per above. ref SDS 0 WS6I  Arlette requested
041148 -        confirmation of these new treatment plans, so that Doctor
041149 -        Johnson can withdraw the chemotherapy order for Gemzar.  By
041150 -        copy to Doctor Johnson I confirm that Gemzar is deferred to
041151 -        implement Doctor Hsu's "one step at at time" process to provide
041152 -        the best possible treatment for my patient profile, which
041153 -        changed yesterday in the meeting with Doctor Hsu, and as
041154 -        reported in my letter to the medical team on 090610 0119 [shown
041155 -        in the record on 090610 0043. ref SDS 20 N630]
041156 -
041157 -            [On 090611 1032 Kathi advised that the Chemotherapy
041158 -            Infusion Clinic was not notified that Gemzar was canceled
041159 -            for 090611 1400. ref SDS 29 LM6R
041161 -         ..
041162 -   12.  Gemzar has severe risks for my patient profile, and Doctor
041163 -        Johnson said on 090528 that it may not work at all because my
041164 -        cancer has mutated to resist conventional chemotherapy
041165 -        technologies, like Gemzar.  Doctor Johnson seemed to say in a
041166 -        call yesterday with Rod that Kaiser's published guidance
041167 -        received late in the day on June 5th to use "extreme caution"
041168 -        giving Gemzar after treatment with radiation [reported on
041169 -        090605 1447. ref SDS 14 V34K] can be ignored because he has
041170 -        treated patients for pancreatic cancer with Gemzar after
041171 -        radiation and they survived.  This begs the question of patient
041172 -        profile.  How much radiation, over what areas, for how long,
041173 -        what was the interval, i.e., what does "after" mean?  Did the
041174 -        patients have PE which required taking blood thinners for life?
041175 -        How was that reconciled with Kaiser's Guidance to avoid blood
041176 -        thinners with Gemzar [reported on 090605 1447. ref SDS 14
041177 -        793G]?  Were the patients in their 8th relapse of cancer, and
041178 -        so subject to fragile blood counts, which Kaiser Guidance says
041179 -        is an extreme risk with Gemzar [see again Kaiser's published
041180 -        guidance on 090605 1447, ref SDS 14 0G49, confirming telecon
041181 -        with Brad, Kaiser's Oncology Pharmacist on 090601 0818,
041182 -        ref SDS 12 JH4K]?
041184 -         ..
041185 -   13.  All of these issues redound to doctor discretion for medical
041186 -        necessity.  I am very grateful to Doctor Johnson saying
041187 -        yesterday he would exercise discretion to prescribe blood
041188 -        transfusions that maintain my blood counts with Gemzar.  This
041189 -        is an entirely new dimension of my oncology experience.  No one
041190 -        I have talked to about cancer in my 8 years of treatment,
041191 -        including hundreds in cancer support groups have ever mentioned
041192 -        getting blood transfers to restore blood counts for getting
041193 -        chemotherapy.  This would add considerably to the cost of care
041194 -        with Gemzar, compared with MPA, which has no impact on blood
041195 -        counts, and is taken at home with pills.
041197 -         ..
041198 -   14.  The letter on 090605 2312 to Zoe with copy to Doctor Johnson
041199 -        requested written explanation of quality care showing a
041200 -        rational basis to prescribe Gemzar against Kaiser's published
041201 -        guidance received earlier on 090605 at 1500.  I further
041202 -        requested a plan to assess progression of cancer, and a plan
041203 -        for the next treatment after Gemzar upon progression, since the
041204 -        doctor has indicated it may not work at all.  Since Kaiser has
041205 -        not submitted written support I must take reluctance as an
041206 -        alert of danger, which is the entire purpose of policy.  Thus,
041207 -        documentation in the record at this time indicates Gemzar is
041208 -        not a viable treatment for me, but rather is dangerous.
041210 -         ..
041211 -   15.  Therefore, today I authorized deferring Gemzar treatment
041212 -        scheduled for tomorrow, based on documented evidence that MPA
041213 -        is a better treatment at far less cost, and we need another
041214 -        week to make an assessment, per Mike's call today, and
041215 -        confirmed by Doctor Hsu's letter, also today.
041216 -
041217 -           [On 090612 0912 Doctor Rugo schedules meeting with Millie on
041218 -           090616 1200 to start MPA at UCSF for recovering from 8th
041219 -           relapse by treating Millie's cancer as a chronic disease, as
041220 -           prescribed by Doctor Johnson at Kaiser. ref SDS 30 TM5H
041222 -         ..
041223 -   16.  I am very aware that delaying treatment, as occurred today, is
041224 -        a big factor in my care.  I notified the team on 090412 that I
041225 -        needed treatment. ref SDS 9 9S8Y  This was actually noted
041226 -        earlier in a letter on 090401 by Doctor Hsu [reported on 090401
041227 -        0046, ref SDS 6 RE8P, and later to Doctor Rugo also on 090401
041228 -        0143, ref SDS 7 R43V  Doctor Rugo proposed treatment on 090514
041229 -        0830. ref SDS 11 D647
041231 -         ..
041232 -   17.  Yesterday, Doctor Hsu discovered my situation is more serious
041233 -        than previously believed because a small amount of IBC tissue
041234 -        that was planned to be treated, literally "slipped through the
041235 -        cracks" of radiation work [reported on 090609 0900. ref SDS 16
041236 -        J33N and cited in Millie's letter to the medical team earlier
041237 -        today on 090610 0043. ref SDS 20 N630].  Delayed treatment
041238 -        clearly compounds this problem, noted by Doctor Hsu yesterday
041239 -        [see again on 090609 0900, ref SDS 16 W66P  If Doctor Rugo
041240 -        finds from the CT test that delayed treatment has tipped me
041241 -        into a strategic inflection point with cancer migrating to
041242 -        internal organs, which until now has not been the case, this
041243 -        will present new challenges for the medical team.
041245 -         ..
041246 -   18.  I am grateful for support from dedicated health care
041247 -        professionals doing difficult work with skill and innovation.
041248 -
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