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Meeting Agenda Schedule 081016 Examination Doctor Review Strategy Wo

1403 -
1403 -    ..
1404 - Summary/Objective
1405 -
140501 - Follow up ref SDS 16 0000. ref SDS 15 0000.
140502 -
140503 -
140504 -
140505 -
140507 -  ..
1406 -
1407 -
1408 - Progress
1409 -
140901 - Millie submitted ref DIT 1 0001 a letter to Jill, who is the new
140902 - clinical research coordinator, working with Megan to assist Brigid and
140903 - Doctor Rugo.  Copies went to the medical team. ref DIT 1 00W3  The
140904 - letter today says...
140905 -
140906 -    1.  Here are agenda issues for discussion tomorrow, starting the
140907 -        9th cycle on the 2nd arm of my care in the clinical trial for
140908 -        cetuximab and Carboplatin... ref DIT 1 0001
140909 -
140910 -        1.  Need order for blood work in the Infusion Clinic by 0800,
140911 -            including CA 15-3, INR, Magnesium, not sure about Glucose,
140912 -            Anion Gap, Albumin, and Protein Total that are included
140913 -            sometimes starting a new cycle, and other times not, please
140914 -            see previous test on 080925 for scope. ref SDS 19 075H,
140915 -            ref DIT 1 0001
140917 -             ..
140918 -        2.  Diane reminded a week or so ago that we need a new Chemo
140919 -            Order for cetuximab, as well as the order for Carboplatin.
140920 -            I know that Brigid does the Carbo order during the meeting,
140921 -            so just a reminder on the additional order for cetuximab.
140922 -            ref DIT 1 WT6M
140924 -             ..
140925 -        3.  Need to order the next CT test at Kaiser on 081113, 8 weeks
140926 -            after the test in Oakland on 080911.  Schedule the test in
140927 -            the afternoon, after 1400.  That provides time to drive
140928 -            from UCSF after treatment, so they can use the Huber needle
140929 -            for the test at Kaiser that is accessed at UCSF for my
140930 -            treatment.  This worked well the last time on 080911.
140931 -            ref SDS 11 LK3R, ref DIT 1 WT7Q
140933 -  ..
140934 - Proposed schedule for next CT test on 081113 is incorrect; should be
140935 - on 081107, which is 8 weeks after 080911.
140936 -
140937 -                [On 081016 letter to medical team after meeting at UCSF
140938 -                diagnosed likely relapse, and prescribed starting new
140939 -                treatment with sinitinib clincical trial; requries CT
140940 -                test for new baseline. ref SDS 24 J44X
140942 -                 ..
140943 -                [On 081023 agenda for meeting at Kaiser to order next
140944 -                CT test on 081107 (not 081113), 8 weeks after prior
140945 -                test on 080911. ref SDS 27 TH9K
140947 -  ..
140948 - CT test is actually required on 081107, 8 weeks after the previous
140949 - test on 080911, ref SDS 11 LK3R, in time for review meeting with
140950 - medical team at UCSF on 081113.
140951 -
140952 -                [On 081023 agenda for meeting at Kaiser on 081024 calls
140953 -                for scheduling next CT test on 081107. ref SDS 27 TH9K
140955 -  ..
140956 - Millie's letter to medical team continues...
140957 -
140958 -        4.  By copy this is a heads up to Doctor Johnson to follow up
140959 -            his notice a few weeks ago that I would like to get the
140960 -            next test at the CT Department in Walnut Creek, rather than
140961 -            Oakland [cited in the letter to the medical team on 080917
140962 -            submitting agenda for meeting at UCSF on 080918.
140963 -            ref SDS 16 SG4X].  Based on experience at Oakland, the only
140964 -            missing ingredient is for Bard to visit the Kaiser CT
140965 -            people in Walnut Creek, as they did for my test in Oakland
140966 -            [reported on 080911, ref SDS 11 JG43, and confirmed by Bard
140967 -            the next day on 080912, ref SDS 12 VI8I].  There was no
140968 -            charge, and Bard has agreed to do the same for my next test
140969 -            in Walnut Creek, if that can be arranged [...reported by
140970 -            Julia on 080801. ref SDS 5 OW41]. ref DIT 1 WT78
140971 -
140972 -                [On 081016 letter to medical team after meeting at UCSF
140973 -                diagnosed likely relapse, and prescribed starting new
140974 -                treatment with sinitinib clincical trial; requries CT
140975 -                test for new baseline. ref SDS 24 J44X
140977 -                ..
140978 -               [On 081017 Paula working on getting Kaiser CT Department
140979 -               in Walnut Creek to coordinate with CT Department in
140980 -               Oakland on practices that meet state requirements,
140981 -               ref SDS 25 707L,
140983 -                ..
140984 -               [On 081017 Paula skeptical that Bard can contribute to
140985 -               enabling technology transfer for Kaiser CT Department in
140986 -               Walnut Creek, as Bard did for the Kaiser CT Department
140987 -               in Oakland. ref SDS 25 035K
140989 -                ..
140990 -               [On 081023 Millie submits letter with agenda for meeting
140991 -               with primary care physician at Kaiser to schedule CT
140992 -               test on 081107 1300 at Kaiser in Walnut Creek.
140993 -               ref SDS 27 TH9K
140995 -             ..
140996 -        5.  If there isn't enough time to make arrangements at Walnut
140997 -            Creek, then the test should be scheduled in Oakland again.
140998 -            They did a great job [reported in a letter to the medical
140999 -            team on 080917, ref SDS 16 SG9T, citing the record on
141000 -            080911, ref SDS 11 LK3R]. ref DIT 1 WT8W
141002 -             ..
141003 -        6.  Note:  patient history, ref DIT 1 FM9G, should be listed
141004 -            as...
141005 -
141006 -                •  metastatic breast cancer, IBC left breast, left arm;
141007 -                •  pulmonary embolism recurrence diagnosed CT test 060930;
141008 -                •  Interstitional lung disease diagnosed CT test 080718.
141010 -             ..
141011 -        7.  My schedule for visiting Doctor Rugo can be extended
141012 -            tomorrow through January and February. ref DIT 1 DW9M
141013 -
141014 -                [On 081016 Megan planned to extend Millie's schedule
141015 -                meeting with Doctor Rugo and the medical team through
141016 -                February; required now to monitor progress starting a
141017 -                new treatment with Sunitinib clinical trial.
141019 -             ..
141020 -        8.  Schedule with the Infusion Clinic is currently set for me
141021 -            to miss treatment on 081030 during vacation starting Monday
141022 -            081027 [shown in the record on 080918, ref SDS 18 EQ9H],
141023 -            which allows time for 2 Neupogen treatments on Friday and
141024 -            Saturday; I return on 081106 in time to get the next CT
141025 -            test a week later on 081113. ref DIT 1 DW4P
141026 -
141027 -                [On 081016 Megan asked why Millie's schedule skips
141028 -                treatment in the Infusion Clinic on 081030, and then
141029 -                recalled from the letter today, that Millie will be on
141030 -                vacation that week.
141032 -                 ..
141033 -                [On 081016 Doctor Rugo advised that Millie's vacation
141034 -                schedule returning on 081106 will fit requirements
141035 -                staring a new treatment with Sunitinib.
141037 -             ..
141038 -        9.  Schedule for Neupogen at Kaiser has been coordinated with
141039 -            the vacation schedule [reported in the record on 081004,
141040 -            ref SDS 20 WJ4O]. ref DIT 1 DW4U
141042 -             ..
141043 -            I am working on reducing Neupogen treatments, which Brigid
141044 -            discussed on 080925.  Cost containment is a constant
141045 -            objective, along with reducing side effects.  This past
141046 -            week was a good opportunity to skip a treatment, because I
141047 -            did not have Carboplatin.  Finally, decided to get both
141048 -            treatments to ensure I get chemo tomorrow.  This past month
141049 -            has seemed to show a rise in blood counts; if that
141050 -            continues, I will skip one or both Neupogen treatments for
141051 -            the 4th week in the next, ref DIT 1 DW48
141053 -             ..
141054 -       10.  I am feeling well, apart from the "roller coaster" of
141055 -            living with cancer.  There are occasional headaches, bone
141056 -            pain, and fatigue from Neupogen, illustrated by the record
141057 -            on 081011. ref SDS 21 FL4H, ref DIT 1 DW5W
141059 -             ..
141060 -            This condition is managed with aspirin, and hiking.
141061 -            ref DIT 1 MO6J
141063 -             ..
141064 -       11.  Hiking history shows increased fitness; yesterday did a
141065 -            very good time. ref SDS 23 4I8M, ref DIT 1 5Y6K
141067 -             ..
141068 -       12.  A few days ago I experienced again significantly elevated
141069 -            pulse.  This differed from previous episodes that lasted
141070 -            only a few seconds or minutes.  On Sunday, the pulse
141071 -            remained elevated for several hours, as reported on 081012.
141072 -            ref SDS 22 3E4K, ref DIT 1 IZ3F
141074 -             ..
141075 -            I was relieved that pulse returned to normal on the 3rd
141076 -            lap, and for the next several days, as shown in the chart
141077 -            for yesterday, 081014.  Notice, as well, there were no
141078 -            evident symptoms of medical distress during the time of
141079 -            elevated pulse. ref DIT 1 KZ3M
141081 -             ..
141082 -            By copy to Doctor Johnson, asking about need for referral
141083 -            to heart doctor. ref DIT 1 KZ43
141085 -             ..
141086 -       13.  My main concern is IBC rash.  The chest and abdomen areas
141087 -            seem stable to improved.  The left arm seems much worse to
141088 -            me, signaling possible progression. ref DIT 1 KZ4W
141090 -             ..
141091 -            The lump in the left supraclavicular reported by Lynn on
141092 -            080821, ref SDS 6 4C6O, and again by Doctor Johnson a week
141093 -            later on 080829, was not mentioned in the report for the CT
141094 -            test and on 080911, reviewed the next day on 080912.
141095 -            ref SDS 13 5O6N  My own sense from self-palpation is the
141096 -            lump remains, but has not grown, i.e., seems stable.
141097 -            ref DIT 1 KZ5Q
141099 -             ..
141100 -            Might there be a surgical solution to remove IBC infected
141101 -            tissue on the left arm, perhaps under a palliation effort
141102 -            that guided mastectomy on 051021, reported on 051007.
141103 -            ref SDS 1 6A4N, ref DIT 1 KZ58
141105 -             ..
141106 -            If current treatment can last another 3 - 6 cycles for the
141107 -            chest and abdomen, would it be cost effective to try
141108 -            removing infected tissue on the left arm to reduce the pace
141109 -            of progression, and a source for spreading disease?  Just
141110 -            musing. ref DIT 1 KZ65
141112 -             ..
141113 -       14.  Future treatment options - this was proposed for discussion
141114 -            on 080918, ref SDS 17 9W6H, but there wasn't enough time.
141115 -            Concern about progression on the left arm drives focus on
141116 -            follow on treatments.  Is there a list, with analysis of
141117 -            pros and cons?  Would it be helpful to meet with Doctor
141118 -            Benz for a review to get a written list of treatment
141119 -            options for the future?  If this can be done for under
141120 -            $1,000 sounds cost effective. ref DIT 1 427G
141121 -
141122 -               [On 081016 Doctor Rugo proposes follow on treatment with
141123 -               Sunitinib clinical study, ref SDS 24 J38U, which is
141124 -               another targeted chemotherapy; and additionally, UCSF
141125 -               has other targeted treatments for Millie to recover from
141126 -               future relapses. ref SDS 24 NW6M
141128 -                ..
141129 -               [On 081016 Doctor proposes FNA biopsy to check for
141130 -               status change ER PR HER2 neu, which could increase
141131 -               treatments for Millie. ref SDS 24 J36R
141133 -                ..
141134 -               [On 081018 Doctor Stritter indicated during a seminar on
141135 -               new treatments for cancer that sunitinib could be a more
141136 -               effective treatment for Millie than cetuximab and
141137 -               Carboplatin which has helped Millie for nearly 2 years.
141138 -               ref SDS 26 PQ6X
141140 -                ..
141141 -               [On 090724 evidenced-based medicine standard of care
141142 -               requires doctor to present trade-offs on effectiveness,
141143 -               side effects, and cost of alternative treatments.
141144 -               ref SDS 28 T58U
141146 -         ..
141147 -    2.  Sorry about such a long list of stuff.  I will be asked
141148 -        tomorrow how I am feeling.  I will able to remember 2 or 3
141149 -        things.  This list enables comprehensive care independent of
141150 -        what I can remember. ref DIT 1 427P
141152 -         ..
141153 -    3.  Finally, we will miss Brigid very much as she embarks on
141154 -        important military service for the nation.  Hopefully, we will
141155 -        all be here to welcome her back next year.  In any case, I want
141156 -        to commend her work, and thank her for caring, sensitive
141157 -        medical practice, aiding Doctor Rugo's goal for delivering
141158 -        excellent care. ref DIT 1 428L
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