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SUBJECTS
Meeting Schedule Agenda Prepare Submit Planning Medical Team UCSF 08

1703 -
1703 -    ..
1704 - Summary/Objective
1705 -
170501 - Follow up ref SDS 10 0000. ref SDS 8 0000.
170502 -
170503 -
170504 -
170505 -
170507 -  ..
1706 -
1707 -
1708 - Progress
1709 -
170901 - Millie submitted, ref DIT 1 0001, a letter with an agenda guiding the
170902 - meeting tomorrow at UCSF sent to Jackie with copies to the medical
170903 - team, including the primary care physician at Kaiser. ref DIT 1 00W3
170904 - The letter says...
170905 -
170906 -    1.  I still don't have an address for Megan, so submitting scope of
170907 -        the meeting tomorrow to you for coordination. ref DIT 1 0001
170909 -         ..
170910 -    2.  First, thanks for feedback from Brigid in her letter on 080620,
170911 -        and confirming UCSF prescription for 1 treatment with Neupogen
170912 -        this past Friday. ref SDS 16 YY5H  I got the treatment at
170913 -        Kaiser later that day. ref SDS 16 016C  Kaiser submitted
170914 -        confirmation of new standing orders for my treatment with
170915 -        Neupogen in the Infusion Clinic, currently scheduled through
170916 -        July, and shown in the record on 080620. ref SDS 16 YY88,
170917 -        ref DIT 1 TQ6F
170919 -         ..
170920 -    3.  Kaiser's schedule should be updated to include a 2nd Neupogen
170921 -        treatment on 080707, that complements the current schedule for
170922 -        treatment on 070705.  It looks like the July 4th holiday may
170923 -        have messed up the computer for that week.  By copy to Kaiser
170924 -        request that Doctor Johnson, and/or Arlette, forward this
170925 -        letter to Zan in the Oncology Pharmacy for follow up.  I don't
170926 -        have an address yet for Zan. ref SDS 16 YY50  UCSF will provide
170927 -        an updated treatment schedule on Thursday (080626).  I will
170928 -        submit the new schedule to Zan for correlating Neupogen
170929 -        treatments, along with new UCSF Chemotherapy Orders showing the
170930 -        Neupogen prescription. ref DIT 1 J67F
170931 -
170932 -            [On 080627 primary care physician wrote a letter notifying
170933 -            the Oncology Pharmacy to schedule Millie for Neupogen
170934 -            treatment on 080707. ref SDS 18 XK5K
170936 -         ..
170937 -    4.  For UCSF, please submit the order for labs to the 5th floor
170938 -        Infusion Clinic and include seven (7) vials for the study blood
170939 -        draw.  As with past practice, I will get the blood draw at 0800
170940 -        on the 5th floor prior to meeting with the medical team on the
170941 -        2nd floor. ref DIT 1 X68H
170943 -         ..
170944 -    5.  The scope for the test is shown in the Chemotherapy Orders.
170945 -        This was not marked in the Chemo Orders starting the previous
170946 -        cycle on 080529. ref SDS 12 PWPT [...and listed in the record
170947 -        of treatment in 080529. ref SDS 12 075H, ref DIT 1 TQ8N
170949 -         ..
170950 -    6.  We can use Chemotherapy Orders for the 4th cycle on 080501, if
170951 -        there is a snag getting the blood draw sent to the Infusion
170952 -        Clinic. ref SDS 5 PWPW, ref DIT 1 TQ9K
170954 -         ..
170955 -    7.  Thomas called again last night on 080624, responding to my
170956 -        letter to the medical team on June 19th, and reporting that the
170957 -        CT test is scheduled by Kaiser for 080718. ref SDS 15 PRXR,
170958 -        ref DIT 1 TQ94
170960 -         ..
170961 -    8.  Thomas related discussions with Doctor Rugo that the CT test at
170962 -        Kaiser should be expedited in order to align with clinical
170963 -        study protocol [presented in an earlier call from Thomas on
170964 -        080619, ref SDS 15 YV5W].  I am notifying Kaiser by copy to the
170965 -        primary care physician that I can come in today, or tomorrow
170966 -        afternoon for the CT test, after treatment at UCSF.  I usually
170967 -        get back to Concord about 1400, so any time after that is fine.
170968 -        ref DIT 1 TQ48
170970 -         ..
170971 -    9.  If surgery for the Power Port can be advanced from the current
170972 -        schedule on 080708, to facilitate the CT test, this would be a
170973 -        great help to me and the CT test people, because using the
170974 -        Power Port enables doing the work in 20 minutes or so, rather
170975 -        than the 2 - 3 hours required for the last test, reported on
170976 -        080425. ref SDS 2 FP6F, ref DIT 1 TQ56
170977 -
170978 -            [On 080711 Kaiser CT Test Department asks about delaying
170979 -            the CT test in order to avoid inconvenience expediting the
170980 -            protocol to use the Power Port in time for the test
170981 -            scheduled for 080718. ref SDS 20 JR35; alternatively,
170982 -            Kaiser proposes not using the Power Port and using a
170983 -            conventional IV for the test on 080718 that inconveniences
170984 -            the patient with pain and damage to the right arm.
170985 -            ref SDS 20 JR40
170987 -             ..
170988 -            [On 080715 Arlette called and reported the doctor solved
170989 -            coordination problems by arranging for a nurse in radiology
170990 -            with certificate to support CT testing with Power Ports;
170991 -            Millie's CT test is good to go on 080718. ref SDS 21 RB4N
170993 -         ..
170994 -   10.  Thomas indicated in his call that the CT test can be done prior
170995 -        to surgery for the Power Port, so I leave this to Kaiser for
170996 -        coordination.  In that case, we should cancel the meeting now
170997 -        scheduled on 080718 for the Infusion Department to access the
170998 -        port with a Huber needle [shown in the schedule on 080620,
170999 -        ref SDS 16 YY4X], planned by [the primary care physician] in
171000 -        his letter on 080429. ref SDS 3 1H6Y, ref DIT 1 TQ63
171002 -         ..
171003 -   11.  Good news.  I seem to be getting stronger.  Recently hiked 7
171004 -        miles to Deer Flat on the Mt Diablo trail [reported on 080616,
171005 -        ref SDS 14 IZ5I], and a few days ago on 080622, did 2 laps at
171006 -        Lafayette reservoir, about 5.5 miles in my best time ever.
171007 -        ref SDS 17 IZ5I, ref DIT 1 TQ65
171008 -
171009 -            [On 080627 Millie reported to the primary care physician
171010 -            during examination at Kaiser that increased fitness from
171011 -            rising energy and exercise have helped dissipate stress and
171012 -            anxiety so that treatment with Prozac drugs have been
171013 -            avoided to control emotional trauma. ref SDS 18 FS5J
171015 -             ..
171016 -            [On 080702 Millie's letter to the medical team confirms
171017 -            reports during examinations at UCSF and at Kaiser of
171018 -            increased exercise and fitness. ref SDS 19 HO5O
171020 -         ..
171021 -   12.  I am concerned though that IBC rash does not seem to be
171022 -        subsiding at the rate we achieved starting the 2nd arm of the
171023 -        study.  I recall Brigid saying that treatment with Carboplatin
171024 -        for some patients was effective for 8 - 10 months, so I was
171025 -        hopeful IBC would continue to improve, and maybe disappear.
171026 -        ref DIT 1 TR37
171028 -         ..
171029 -   13.  Chemotherapy Orders for 080529 show a notation of an error on
171030 -        the amount of Carboplatin I receive.  It looks this may have
171031 -        been reduced from 250 mg for the previous treatments, down to
171032 -        just 175 mg. ref SDS 12 PVUQ, ref DIT 1 TR44
171034 -  ..
171035 - Millie's letter to UCSF and Kaiser on 080423 said to maintain full
171036 - dose of Carboplatin. ref SDS 1 TY6Y
171038 -  ..
171039 - Millie's letter to medical team continues...
171040 -
171041 -   14.  Actually, the previous cycle seems to show also a reduction for
171042 -        Carboplatin to 175 mg.  There was discussion among the medical
171043 -        team during the meeting on 080529 that an error had occurred,
171044 -        but there was no explanation at that time. ref SDS 11 NW89  So,
171045 -        I am concerned about progression of disease.
171047 -             ..
171048 -            [On 080716 Millie letter to Kaiser asks about meeting to
171049 -            discuss CA 15-3 141 and progression of disease before
171050 -            scheduled meeting on 080829. ref SDS 22 VG7L
171052 -         ..
171053 -   15.  I realize there are also problems getting my treatments with
171054 -        low blood counts, which have led to Neupogen treatments.  I
171055 -        have to discuss the overpayment on 080609 of $2k with [the
171056 -        primary care physician], when we meet at Kaiser on Friday.
171057 -        ref SDS 13 PR5U  There just seem to be a lot of balls in air
171058 -        right now which complicate the work. ref DIT 1 TR46
171060 -  ..
171061 - This confirms Millie's report to the medical team on 080619 of a
171062 - mischarge due to computer mistakes. ref SDS 15 YU9T
171063 -
171064 -            [On 080627 primary care physician at Kaiser writing letter
171065 -            to resolve the mistake. ref SDS 18 NM3M
171067 -             ..
171068 -            [On 080702 letter to medical team confirms planning for
171069 -            primary care physician to write a letter correcting the
171070 -            mistake of $2,000 mischarge for drugs which Millie was
171071 -            required to return. ref SDS 19 EP4T
171073 -  ..
171074 - Millie's letter to medical team continues...
171075 -
171076 -   16.  In any case, please let me know if the CT schedule is changed.
171077 -        I am willing to do the test without the surgery, if that is
171078 -        needed. ref DIT 1 TR5E
171079 -
171080 -           [On 080711 Kaiser CT Test Department asks about delaying
171081 -           the CT test scheduled for 080718 in order to have time for
171082 -           training and certifying staff to use the Power Port,
171083 -           ref SDS 20 JR35; alternatively, Kaiser proposes not using
171084 -           the Power Port and using a conventional IV that
171085 -           inconveniences the patient with pain and damage to the
171086 -           right are. ref SDS 20 JR40
171088 -         ..
171089 -   17.  Looking forward to seeing everyone tomorrow. ref DIT 1 XL6I
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