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 73 0000. ref SDS 70 0000.
040502 -
040503 -
040504 -
040505 -
040506 -
040508 -  ..
0406 -
0407 -
0408 - Background
0409 -
040901 - Background leading up to meeting at UCSF earlier today is listed in
040902 - the record on 090715, reporting Millie's letter submitting the agenda
040903 - for the meeting. ref SDS 72 QM5O
040905 -  ..
040906 - On 090716 Millie met with the medical team at UCSF today; Tara Lacy
040907 - made findings of IBC progression, based primarily on reduced
040908 - breathing. ref SDS 73 GM50  As a result, Tara contacted Doctor Rugo
040909 - who was traveling.  Tara advised that Doctor Rugo ended treatment with
040910 - MPA due to concerns about side effects of possible PE based on
040911 - Millie's difficult brathing.
040913 -  ..
040914 - On 090716 2106 this evening about 2010, Tara called Millie at home.
040915 - She advised that Doctor Rugo does not have more treatments targeted
040916 - for Millie's patient profile.  The doctor expects that in September
040917 - Millie can start treatment with PARP, but that regimen is not yet
040918 - ready for delivery to patients.  Doctor Rugo prescribes Millie get
040919 - Gemzar, and proposes that Kaiser provide this treatment, because the
040920 - cost to UCSF would be less than UCSF can provide the treatment.
040922 -  ..
040923 - Millie sent the following letter to the medical team confirming events
040924 - of the day...
040925 -
040926 -    1.  Subject: UCSF Meeting Finds Possible Progression May Change Treatments, Order CT, INR Elevated
040927 -        Date: Thu, 16 Jul 2009 21:38:46 -0700
040941 -         ..
040942 -    3.  Confirming understandings from meeting with Tara and Mike, and
040943 -        Lena, a new coordinator observing and assisting today [and
040944 -        based on agenda submitted to the medical team yesterday on
040945 -        090715 0224. ref SDS 72 SY5H].
040947 -         ..
040948 -    4.  INR 3.5 in the labs today on 090716 0810 in the Infusion Clinic
040949 -        at UCSF.  Elevated INR reflects increased bleeding during
040950 -        biopsy performed today by Doctor Amara Malik, and for the
040951 -        purpose of the MPA study protocol.  Doctor Malik did
040952 -        outstanding work suturing the wound to avoid bleeding.  On
040953 -        090616 wound from the initial study biopsy was dressed with a
040954 -        steri-strip, rather than stitches, because at that time there
040955 -        was minimal bleeding.
040957 -         ..
040958 -    5.  By copy notify Gloria in the Kaiser Coagulation Control
040959 -        Department.  The only changes in medication have been starting
040960 -        daily MPA treatment for cancer begun on 090616, and starting
040961 -        Robitussin with codine to control coughing prescribed on 090702
040962 -        by Jean Anne in the UCSF Triage Department.  I have taken very
040963 -        little Robitussin.
040965 -         ..
040966 -    6.  Tara said to stop taking MPA today due to progression of
040967 -        disease observed during the examination.  UCSF withheld MPA
040968 -        pills for the 2nd cycle, pending review by Doctor Rugo, who was
040969 -        out of town today.
040971 -  ..
040972 - This conflicts with procedure and practice at Kaiser that typically
040973 - strives to provide 2 cycles to fully evaluate effects of new treatment
040974 - in Millie's case.
040976 -  ..
040977 - Millie's letter to medical team continues...
040978 -
040979 -    7.  Tara described findings of IBC spreading on my left arm,
040980 -        especially the tricep, but as well surrounding the lower left
040981 -        arm.  IBC has spread wrapping further around the left side
040982 -        toward the back.  Tara provided guidance to reduce bleeding of
040983 -        the untreated vertical line of IBC on the breastbone.
040985 -         ..
040986 -    8.  Thanks very much to Tara for presenting strong concern today
040987 -        during the meeting about rising breathing problems and cough,
040988 -        reported to the medical team the past 2 months.  I did not
040989 -        cough during the meeting, but Tara observed that walking from
040990 -        the lobby to the examination room, and simply sitting and
040991 -        talking cause loss of breath.  Tara had me walk through the
040992 -        hallway in the Breast Care Clinic and attached to a diagnostic
040993 -        machine.  She was pleased that my so2 [oxygen] stayed steady at
040994 -        about 96.  Tara also noted my pulse did not rise above 100,
040995 -        which she reported occurs with some patients doing this test.
040997 -         ..
040998 -    9.  Tara is concerned loss of breath symptoms may indicate another
040999 -        pulmonary embolism.  The first PE discovered by CT test
041000 -        reported at Kaiser on 041103, after months of rising symptoms,
041001 -        and so I started Coumadin; and, the 2nd PE was on 060930, after
041002 -        being off Coumadin since 051007.
041004 -         ..
041005 -   10.  Tara also cited possibility that cancer in the lungs can cause
041006 -        my symptoms, previously cited by Doctor Hsu on 090609.
041007 -        ref SDS 65 EK8J
041009 -         ..
041010 -   11.  Tara examined and discussed tightness on the left side, which
041011 -        Doctor Hsu asked about on 090701, saying he could provide
041012 -        treatment. ref SDS 71 SF8I  [this was presented in the agenda
041013 -        for the meeting today in Millie's letter to the medical team on
041014 -        090715 0224. ref SDS 72 0I9X]
041016 -         ..
041017 -   12.  Initially, Tara proposed I wait and/or return to UCSF this
041018 -        afternoon to meet with you in order to expedite starting
041019 -        treatment of advancing symptoms.  Uncertainty about your
041020 -        schedule today, because you were in transit flying back to town
041021 -        from a trip, resulted in plans for you to call me later today
041022 -        at your convenience to discuss treatment plans, including
041023 -        requirements to order a CT test for PE and/or cancer.
041025 -         ..
041026 -   13.  Good news is my blood counts are the highest in 4 years, so I
041027 -        am ready to move forward.
041029 -         ..
041030 -   14.  Tara just called at 2010 this evening, as planned.
041032 -         ..
041033 -   15.  I am grateful for her putting in extra time.  Tara related that
041034 -        she met with you this afternoon.  You evidently feel that
041035 -        spread of IBC [...which conflicts with record submitted in
041036 -        Millie's letter to the medical team to guide review today,
041037 -        reported on 090715 0224. ref SDS 72 0I4Y...], and continuing
041038 -        breathing problems [... caused by UCSF radiation mistakes
041039 -        reported by Doctor Hsu on 090609, ref SDS 65 R24G, and which
041040 -        Tara reported during examination today at UCSF finding Millie
041041 -        suffers increasing breathing problems, reflect symptoms of
041042 -        pulmonary embolism, which is a rare side effect of MPA....]
041043 -        signal progression, and so I must end treatment with MPA.  Tara
041044 -        indicated the only treatment you feel can treat my patient
041045 -        profile is Gemzar [...which conflicts with Kaiser Oncology
041046 -        Pharmacy report that Gemzar will not be effective for Millie's
041047 -        patient profile, shown on 090601 0818, ref SDS 63 JH4K, and
041048 -        will cause severe side effects, including infection, and even
041049 -        death, ref SDS 63 FR8L...] at least until September, when a
041050 -        study will open for PARP.  You mentioned on 090616 that
041051 -        sponsors at UC Davis encountered delays launching the PARP
041052 -        study.  After discussing my case with Tara, you sent a letter
041053 -        to Doctor Johnson asking him to call you on arranging Gemzar
041054 -        treatment for me at Kaiser [...Tara indicated in the call that
041055 -        Doctor Rugo feels Kaiser can provide Gemzar treatment at less
041056 -        cost than at UCSF, so getting treatment at Kaiser with Gemzar
041057 -        saves UCSF money on treating Millie to recover from UCSF
041058 -        medical mistakes that caused advance of cancer, and lung
041059 -        problems...].
041060 -
041061 -            [On 090725 2017 Millie notified Doctor Johnson to submit
041062 -            copy of Doctor Rugo's letter modifying UCSF's treatment
041063 -            plan for Millie to start treatment at UCSF in September,
041064 -            rather than immediately after ending MPA. ref SDS 74 T64P
041066 -             ..
041067 -            [On 090909 Doctor Johnson advised that his schedule had
041068 -            cleared to have enough time for reviewing treatment options
041069 -            submitted on 090326, and providing analysis comparing
041070 -            trade-offs in order to prescribe treatment with the best
041071 -            chance of being effective. ref SDS 75 VF60
041073 -             ..
041074 -            [On 090922 0028 requests guidance from Doctor Rugo on
041075 -            Kaiser's recommendation to continue Gemzar, which was
041076 -            prescribed by UCSF for performance at Kaiser to mitigate
041077 -            damages recovering from medical mistakes getting radiation
041078 -            services from UCSF on referral from Kaiser. ref SDS 76 NW6P
041080 -             ..
041081 -            [On 090922 0028 Millie asks medical team about progress
041082 -            starting PARP, and review of other targeted therapies.
041083 -            ref SDS 76 NW6S
041085 -             ..
041086 -            [On 091027 0830 Doctor Johnson disclosed that there still
041087 -            has not been enough time to review follow on treatments for
041088 -            Millie, and that he has not heard from Doctor Rugo on
041089 -            UCSF's progress starting the PARP protocol. ref SDS 77 GN5G
041091 -             ..
041092 -            [On 091112 0930 Kaiser medical chart reports Millie's CT
041093 -            test on 090919 to evaluate painful breathing that required
041094 -            treatment in the Emergency Department, and recovery in the
041095 -            hospital for a week, shows no evidence of pulmonary
041096 -            embolism, ref SDS 78 RU6U; the test shows ground glass
041097 -            opacities have reduced in one area of the lungs, and
041098 -            increased in another, reflecting continuing injury from
041099 -            radiation treatments Millie received at UCSF. ref SDS 78
041100 -            OY8J
041102 -             ..
041103 -            [On 100112 0830 Doctor Johnson reviews published guidance
041104 -            on 2nd opinion PARP therapy targeted to treat Millie's
041105 -            cancer with triple negavie patient profile. ref SDS 79 N586
041107 -             ..
041108 -            [On 100606 2314 Doctor Johnson reported that Doctor Rugo
041109 -            has still not returned his call from Kaiser requesting
041110 -            treatment plan for Millie to recover from UCSF medical
041111 -            mistakes. ref SDS 80 S66O
041113 -         ..
041114 -   16.  I explained to Tara this evening that Doctor Johnson is on
041115 -        vacation for a few weeks.  I received an "Out of office" reply
041116 -        from him yesterday, when the agenda was submitted for the
041117 -        meeting at UCSF today.  Tara said you did not get an "Out of
041118 -        Office" response today, so Doctor Johnson may have returned
041119 -        early, or he is now picking up email while traveling.
041121 -         ..
041122 -   17.  Tara indicated this evening, she will follow up on Monday to
041123 -        expedite my next treatment.  Cross agency coordination between
041124 -        Kaiser and UCSF has been difficult.
041126 -         ..
041127 -   18.  In theory, I should be able to start treatment right away,
041128 -        since Doctor Johnson set this up to start on 090611.  Tara
041129 -        indicated today that you conclude another CT test is not
041130 -        needed, as Tara proposed today, because progression is certain.
041132 -         ..
041133 -   19.  How will the "blood thinner" issue be addressed?  Kaiser's
041134 -        guidance on Gemzar received on 090605 says to avoid blood
041135 -        thinners. ref SDS 64 745O
041137 -         ..
041138 -   20.  Can Coumadin be paused or reduced??  Since INR 3.5 was high
041139 -        today, it has to be reduced anyway.
041141 -         ..
041142 -   21.  Thanks very much to you and Doctor Johnson for excellent
041143 -        support, and especially to Tara for calling this evening.
041144 -        Having some some idea of what's going to happen is a big
041145 -        relief.
041147 -         ..
041148 -   22.  Please keep me posted.
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