CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 32 0000. ref SDS 31 0000.
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Background
0409 -
040901 - On 090423 Millie met with Tara in the Breast Care Clinic at UCSF for
040902 - examination, which showed recovery from side effects of radiation and
040903 - hyperthermia treatments during February and March 2009. ref SDS 21 QR3M
040904 - This was confirmed in Millie's letter to the medical team later that
040905 - day on 090423. ref SDS 22 ZL6T  Tara also found expanding IBC on the
040906 - lower left arm, ref SDS 21 DW6F, also confirmed in the letter to the
040907 - medical team. ref SDS 22 ZL7P
040909 -  ..
040910 - At that time, on 090423 Tara planned to discuss with Doctor Hsu in the
040911 - UCSF Radition Oncology Department concerns about slow healing of
040912 - radiation side effects in Millie's breastbone area. ref SDS 21 R15K
040913 - Collaboration plans were further confirmed in Millie's letter to the
040914 - medical team on 090423. ref SDS 22 ZL7V
040916 -  ..
040917 - In the afternoon on 090423 1315 Millie met with Doctor Hsu to check on
040918 - recovery from radiation side effects. ref SDS 21 4H5G  Doctor Hsu gave
040919 - Millie a "thumbs up" that she was well enough to take time from
040920 - treatment to go on a 2-week vacation, ref SDS 21 FJ6K, and despite
040921 - confirming diagnosis of IBC relapse on the lower left arm, ref SDS 21
040922 - 5G4G, and despite growing doubts about vertical line of sking infected
040923 - either by IBC or radiation side effects. ref SDS 21 EX4I  The doctor
040924 - recommended against taking a biopsy because the skin was thought to be
040925 - radiated, and surrounding tissue was radiated, and so this would delay
040926 - and prevent normal recovery from a biopsy wound. ref SDS 21 456H
040928 -  ..
040929 - On 090423 2337 Millie's letter to medical team reports Doctor Hsu's
040930 - favorable report that IBC cannot recur in treated areas, because
040931 - nothing can grow in treated areas. ref SDS 22 ZL9V  The letter further
040932 - confirms UCSF plans to treat IBC recurrence on the lower left arm as a
040933 - chronic disease with systemic agents prescribed by Doctor Rugo in the
040934 - Breast Care Clinic, ref SDS 22 ZL4X, and notes the meeting scheduled
040935 - with Doctor Rugo on 090514. ref SDS 22 ZL5Q
040937 -  ..
040938 - Yesterday on 090510 1553, Millie submitted an agenda for the meeting
040939 - on 090514 to start treatment of the 8th relapse. ref SDS 23 QH9J  The
040940 - letter was hurried to fit commitments for attending Mother's Day
040941 - family event.  In the afternoon on 090510 1953, after retrurning home,
040942 - Millie sent a second letter to further explain the agenda for meeting
040943 - on Thursday 090514 at UCSF with Doctor Rugo. ref SDS 24 FJ3G
040945 -  ..
040946 - This morning, called and talked to Amanda about coordinating to
040947 - facilitate the agenda for meeting with Doctor Rugo on Thursday,
040948 - 090514, particularly on requirements for blood tests at Kaiser, as
040949 - discussed in Millie's letter on 090510 1953. ref SDS 24 LJ7X
040951 -  ..
040952 - Amanda requested a copy of Millie's letter to the medical team that
040953 - explains details about getting a lab.  Millie sent the letter to
040954 - Amanda and requested clarification on requirements for a lab.
040955 - ref SDS 25 YN33  After sending the letter to Amanda this afternoon,
040956 - Kaiser notified Millie on 090511 1427 that Doctor Johnson has a
040957 - standing order at Kaiser for Millie to get a monthly blood test,
040958 - ref SDS 26 FJ5L; so, Millie then sent a letter notifying the medical
040959 - team that the blood draw will be done on 090512, so that people can be
040960 - prepared for a productive meeting at UCSF on 090514. ref SDS 26 FJ6G
040962 -  ..
040963 - On 090511 2013, Doctor Rugo sent a letter saying that scope for labs
040964 - at Kaiser performed to support examinations at UCSF should be
040965 - determined by Kaiser rather than by UCSF. ref SDS 27 RF4J
040967 -  ..
040968 - On 090511 2313, Millie notified Doctor Rugo that case study on 090325,
040969 - ref SDS 14 KZ6N, shows UCSF has been setting the scope on labs at
040970 - Kaiser for the past 3 years that are used to guide the work for
040971 - Millie's care at UCSF on referral from Kaiser, ref SDS 28 YN4L
040973 -  ..
040974 - On 090512 Millie went to Kaiser for the lab.  ref SDS 29 6Z4F
040976 -  ..
040977 - On 090513 1654 Millie submitted results of Kaiser's lab to UCSF,
040978 - ref SDS 30 N54I, and notifies Doctor Mason at Kaiser's Outside
040979 - Referrals Department about more mistakes at Kaiser that causes poor
040980 - coordination of Millie's care at UCSF on referral from Kaiser.
040981 - ref SDS 30 ZH6W, and follows up Doctor Mason's plan on 090420 for
040982 - Kaiser to work harder with greater diligence to avoid mistakes in
040983 - order to continue doing labs at Kaiser rather than include labs for
040984 - referral at UCSF for Millie's treatments at UCSF. ref SDS 20 8G3N
040986 -  ..
040987 - Millie received a letter from Pam who works for Doctor Mason in
040988 - Kaiser's Outside Referrals Department, and asking why the Outside
040989 - Referrals Department was notified about mistakes at Kaiser performing
040990 - labs required for Millie's care at UCSF on referral from Kaiser.
040991 - ref SDS 31 2T5L
040993 -  ..
040994 - Millie replied to Pam's letter explaining patient history assists
040995 - Doctor Mason evaluate requirements for effective coordination because
040996 - chronic mistakes at Kaiser can be avoided by performing labs at UCSF
040997 - for Millie's care at UCSF. ref SDS 32 PQ5N
040999 -  ..
041000 - On 090514 0830 Millie met with Doctor Rugo, ref SDS 33 TP9L, and the
041001 - doctor prescribed treatment in the MPA clinical trial to help Millie
041002 - recover from the 8th relapse of cancer. ref SDS 33 A13N
041004 -  ..
041005 - This evening, Millie notified the medical team about the new treatment
041006 - and submitted the agenda for meeting tomorrow with Doctor Johnson at
041007 - Kaiser to perform oversight review...
041008 -
041009 -    1.  Subject: Examination and Work Plan 7th Relapse IBC
041010 -        Date: Thu, 14 May 2009 23:59:16 -0700
041021 -         ..
041022 -    2.  Thanks for visiting today [at UCSF on 090514 0830, ref SDS 33
041023 -        TP9L], as planned in your letter on [090331 and received in the
041024 -        record on 090401 0121, and which delayed treatment 6 weeks in
041025 -        order for the bleeding wound in Millie's breastbone area to
041026 -        heal, diagnosed reaction to radiation. ref SDS 15 K56O].
041027 -
041028 -            [On 090607 2253 Millie notified medical team that wound in
041029 -            the breastbone area diagnosed as reaction to readiation
041030 -            treatment was worse; requested additional treatment planned
041031 -            by UCSF. ref SDS 39 KS62
041033 -             ..
041034 -            [On 090609 Doctor Hsu advises that the wound in Millie's
041035 -            breastbone area is not caused by reaction to radiation
041036 -            treatments; the bleeding wound was caused by a mistake
041037 -            performing radiation in February and March at UCSF that
041038 -            missed treating IBC in the breastbone area and this
041039 -            untreated IBC tumor has caused cancer to spread, and causes
041040 -            problems in Millie's lungs that prevent breathing.
041041 -            ref SDS 40 TP9L
041043 -         ..
041044 -    3.  Tara's examination this morning found IBC significantly
041045 -        degraded in treated areas, and there has been substantial
041046 -        recovery from previous severe side effects, ref SDS 33 5U4H,
041047 -        following completion of radiation and hyperthermia performed by
041048 -        Doctor Hsu, which ended on 090317. ref SDS 12 9L7K
041050 -         ..
041051 -    4.  After Tara's review, you also made an examination about 60
041052 -        minutes later, ref SDS 33 IP6F, and concurred that objectives
041053 -        of your referral on 090129 for radiation and hyperthermia to
041054 -        achieve local control have been largely accomplished, so that
041055 -        at this time there is a more manageable problem to solve.
041056 -        ref SDS 33 HX4L
041058 -         ..
041059 -    5.  Your examination also aligned with Tara's finding of IBC
041060 -        progression primarily on the left arm below the area treated
041061 -        with radiation and hyperthermia.  There are also minor IBC
041062 -        sites on the periphery of treated areas roughly between the
041063 -        left collar bone and the upper left shoulder, and on the left
041064 -        side of the abdomen wrapping toward the back. ref SDS 33 3T4T
041066 -         ..
041067 -    6.  There was brief note during the meeting that progression of IBC
041068 -        observed today aligns with rise in cancer marker CA 15-3 320
041069 -        for the lab at Kaiser 2 days ago on 090512. ref SDS 29 PQTQ
041070 -        You seemed to say the rise from 271 for the prior test 3 weeks
041071 -        ago on 090423 is not significant at this time.  You underscored
041072 -        the importance of clinical assessment observing IBC rash.
041073 -        ref SDS 33 UA3G
041075 -         ..
041076 -    7.  The left arm is swelled with lymphedema.  Thankfully, there is
041077 -        no Cellulitis.  Tara seemed to feel that IBC may be a factor
041078 -        causing sudden lymphedema in the left arm.
041080 -         ..
041081 -    8.  The right breast is also swelled with edema reacting to
041082 -        radiation that ended on 090317.  There is no sign that IBC has
041083 -        spread to the right breast. ref SDS 33 AO3G  Tara provided
041084 -        guidance for home care with massage to treat swelling of the
041085 -        right breast. ref SDS 33 AN97
041087 -         ..
041088 -    9.  There was also recommendation today that Doctor Johnson order a
041089 -        consult with a therapist at Kaiser to assist with care of the
041090 -        problem in the right breast, ref SDS 33 AO3G, similar to
041091 -        therapy in 2006 that assisted recovery from lymphedema in the
041092 -        left arm following surgery in late 2005 [reported on 060217,
041093 -        ref SDS 3 T56K].
041095 -         ..
041096 -   10.  You seemed to indicate today that slight increase in lung
041097 -        nodules reported in the CT test at Kaiser on 090413 may be side
041098 -        effects from extensive radiation during February and March.
041099 -        ref SDS 33 DE8M  I reported episodes of cough and clearing my
041100 -        throat that lasted a day or so, last week, but has not recurred
041101 -        the past few days.
041103 -         ..
041104 -   11.  During the meeting today, you prepared a work up on my
041105 -        treatment history drawing on data in the medical chart file
041106 -        folder. ref SDS 33 AZ9N  My current patient profile is listed
041107 -        in the record meeting with Doctor Johnson at Kaiser on 090213.
041108 -        ref SDS 11 ES7I and cites treatment history listed on 090121.
041109 -        ref SDS 6 H16M
041111 -         ..
041112 -   12.  You described a number of modalities to implement Doctor
041113 -        Johnson's request for UCSF to treat my cancer as a chronic
041114 -        disease. ref SDS 33 YW48
041116 -         ..
041117 -   13.  There was extensive discussion of new research for treatment of
041118 -        triple negative status. ref SDS 33 3F7M
041120 -         ..
041121 -   14.  During the meeting you wrote a letter to Doctor Johnson,
041122 -        ref SDS 33 DI63, requesting approval to begin immediate
041123 -        treatment [with MPA], ref SDS 33 CT9K, in order to prevent
041124 -        cancer from cascading out of control again [as occurred
041125 -        previously on 090202, ref SDS 8 Y15J].
041127 -         ..
041128 -   15.  Tomorrow I will meet with Doctor Johnson at Kaiser to expedite
041129 -        referral, including ordering the CT test.
041130 -
041131 -            [On 090515 0952 Millie received letter from Doctor Rugo
041132 -            saying that Kaiser has notified UCSF that Kaiser will not
041133 -            continue treating Millie with the protocol recommended by
041134 -            UCSF to recover from the 8th relapse of canser. ref SDS 34
041135 -            LF3H
041137 -             ..
041138 -            [On 090515 1017 Millie notifies medical team that Doctor
041139 -            Rugo's letter today was received, that Kaiser is
041140 -            responsible for Millie's care, and Millie will meet with
041141 -            the primary care doctor at Kaiser on 090515 1140 and
041142 -            request that Kaiser prescribe care for Millie's 8th relapse
041143 -            of cancer based on the best evidence, ref SDS 35 6Q8W, as
041144 -            shown in Doctor Rugo's letter to Kaiser on 090514 0830.
041145 -            ref SDS 33 DI63
041147 -             ..
041148 -            [On 090518 0017 Millie submits letter to Doctor Johnson
041149 -            with copy to Doctor Rugo at UCSF, and transmitting a draft
041150 -            to assist Doctor Johnson file his appeal with Member
041151 -            Services assisting Kaiser implement Doctor Johnson's
041152 -            strategy to treat Millie's cancer as a chronic disease in
041153 -            time for Millie to recover from the 8th relapse of cancer.
041154 -            ref SDS 36 R16I
041156 -             ..
041157 -            [On 090519 1536 Doctor Johnson changed his mind; he sent
041158 -            the draft appeal to Doctor Mason, and tells Millie to file
041159 -            an appeal with Member Services, which is incorrect since at
041160 -            this time Millie has not been denied medical services; and
041161 -            the doctor further says he is suddenly relieved of
041162 -            responsibility performed continuously the past 8 years to
041163 -            prescribe treatment for Millie to recover from cancer,
041164 -            because Kaiser's Outside Referrals Department has a better
041165 -            understanding of Medicare. ref SDS 37 5K7H
041167 -             ..
041168 -            [On 090616 1245 Doctor Rugo advised that "everybody is now
041169 -            on board" for Millie's treatment going forward, ref SDS 41
041170 -            D647, referring to Millie's proposal on 090518 treating
041171 -            "Stage V" patients for long term survival. ref SDS 36 W93Q
041173 -         ..
041174 -   16.  You explained today that a hectic schedule leaves very limited
041175 -        time for communication on complex case management involved in
041176 -        my case. ref SDS 33 LS6I  I regard my time with you, as with
041177 -        Doctor Johnson, as very precious and valuable.  All of my
041178 -        efforts strive to position the medical team to work quickly and
041179 -        accurately.  I disagree that relying on summary bulleted items
041180 -        without context of time nor correlations, implications and
041181 -        nuance leads to better time management and improved care.  At
041182 -        the same time, I greatly respect your practice, expertise, and
041183 -        accomplishments, and will continue to do all I can to ease your
041184 -        burden.
041185 -
041186 -            [On 090529 1109 tried summarizing complexity of relevant
041187 -            patient history for Doctor Rugo, and submitting analysis
041188 -            for comprehensive care to the medical team. ref SDS 38 448K
041190 -         ..
041191 -   17.  Please bear with me on this letter, which is a very important
041192 -        step in getting the next phase of care launched.
041193 -
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