CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS B8 0000. ref SDS B6 0000.
040502 -
040503 -
040504 -
040505 -
040506 -
040508 -  ..
0406 -
0407 -
0408 - Background
0409 -
040901 -    1.  On 090218 1205 Millie requests explanation of treatment plan.
040902 -        Doctor Rugo's letter to Kaiser on 090129 discussed hyperthermia
040903 -        with Doxil, reported on 090130. ref SDS 66 TZ6H  Has the plan
040904 -        changed to use "lower dose" radiation rather than Doxil.  Will
040905 -        both be used, or some other agent?  At this time, the record is
040906 -        confusing about scope.  Please explain initial assessment, and
040907 -        prognosis.  If this has already been submitted to Doctor
040908 -        Johnson and Doctor Rugo, send a copy to Millie. ref SDS A7 TH5W
040910 -         ..
040911 -    2.  On 090218 1205 Millie reports to medical team good meeting with
040912 -        Doctor Johnson at Kaiser on 090213.  He seemed optimistic that
040913 -        Millie might have 3 - 6 months of recovery, but will need
040914 -        treatment from Doctor Rugo for cancer as a "chronic disease." A
040915 -        week or so ago on 090210, Lena called to scheduling meeting
040916 -        with Doctor Rugo on 090312 0830, reflecting comprehensive
040917 -        follow up ordered by Kaiser during the meeting on 090203.
040918 -        ref SDS A7 TH6U
040920 -         ..
040921 -    3.  On 090218 1205 Millie asks UCSF about obtaining records from Mt
040922 -        Diablo Medical Center of prior radiation in 2002, which Doctor
040923 -        Hsu discussed doing during the meeting at UCSF on 090205.
040924 -        ref SDS A0 PN8H, and which cites Doctor Benz 2nd opinion at
040925 -        UCSF on 041018 saying Millie likely cannot tolerate more
040926 -        radiation. ref SDS A0 YO9G  Was that so long ago, there is risk
040927 -        from additional radiation now? ref SDS A7 TH6X
040929 -         ..
040930 -    4.  On 090218 1205 Millie asks UCSF about responding, ref SDS A7
040931 -        TH7V, to the letter a week ago on 090209 requesting explanation
040932 -        of side effects from radiation and hyperthermia, ref SDS A3
040933 -        745R, following Doctor Hsu's comments during the meeting on
040934 -        090205. ref SDS A0 GM4N  Does the treatment plan address this
040935 -        prospectively, or as needed?  For example, as noted in the
040936 -        letter on 090209, research found that side effects of radiation
040937 -        are sometimes treated with Vitamin E plus pentoxifylline
040938 -        (Trental), ref SDS A3 745R, which can be problematic with
040939 -        Coumadin, so Gloria in the Coagulation Control Clinic at Kaiser
040940 -        will need input. ref SDS A7 TH7V
040942 -         ..
040943 -    5.  On 090218 1205 Millie looking forward to starting treatment on
040944 -        090219, and despite worry about delays that prevent treatment
040945 -        from being effective. ref SDS A7 TH7Y  Millie Thanks Doctor Hsu
040946 -        for expediting care, reported on 090203, ref SDS 86 XX5I, and
040947 -        to Doctor Rugo for guidance through troubled waters, shown by
040948 -        UCSF letter on 090202 1722. ref SDS 81 Y15J
040950 -         ..
040951 -    6.  On 090220 Millie's letter to Doctor Hsu requests...
040952 -
040953 -           a.  Computer file of picture showing typical configuration
040954 -               of hyperthermia treatment. ref SDS A9 XX5O
040955 -
040956 -           b.  Computer file of picture showing typical configuration
040957 -               of radiation treatment. ref SDS A9 XX5O
040959 -                ..
040960 -           c.  Summary/general explanatoin of radiation and
040961 -               hyperthermia treatments.  Radiation on 090219 took much
040962 -               longer than radiation Millie had in 2002, so there seems
040963 -               to be a qualitative difference in technology and
040964 -               process.  Initially assumed IBC in the skin is not
040965 -               treated with radiation, and is directed instead to treat
040966 -               lymphadenopathy.  After today, seems like maybe UCSF is
040967 -               treating IBC with both radiation and hyperthermia??  Can
040968 -               you please clarify. ref SDS A9 EA4Q
040970 -                ..
040971 -           d.  Hyperthermia is a sonar process of some kind.
040972 -               ref SDS A9 EA4T
040974 -                ..
040975 -           e.  Orders for Millie's radiation and hyperthermia
040976 -               treatments, similar to "Chemotherapy Orders" received
040977 -               for treatments in the Infusion Clinic the past 2 years.
040978 -               If possible, UCSF should submit a computer file to
040979 -               reduce the time and cost for adding the treatment plan
040980 -               to patient history. ref SDS A9 EA4W
040982 -                ..
040983 -           f.  Metrics for evaluating when treatment concludes.
040984 -               ref SDS A9 EA5P
040986 -                ..
040987 -               When Millie was treated at Kaiser with capecitabine and
040988 -               Taxotere from Apr - Sep 2005, IBC rash seemed totally
040989 -               resolved by visual examination.  There was then a
040990 -               mastectomy in October 2005.  Biopsy of removed tissue
040991 -               affirmatively reported no findings of IBC.  Yet, years
040992 -               later Millie is being treated again for IBC. ref SDS A9
040993 -               EA5T This raises two questions...
040995 -                    ..
040996 -               1.  How comprehensively can the current treatment
040997 -                   resolve IBC, and how is this assessed, beyond simple
040998 -                   visual inspection, and drop in the cancer marker?
040999 -                   Is there an xray, PET scan, or other diagnostic that
041000 -                   shows where we are for planning follow on steps?
041001 -                   ref SDS A9 EA5T
041003 -                    ..
041004 -               2.  Can hyperthermia treatment be done again, if IBC
041005 -                   pops up later, as obviously happened to me?  Will
041006 -                   there be follow up at least for a month or so in
041007 -                   radiation oncology, in case IBC does recur in the
041008 -                   near term? ref SDS A9 WF5I
041010 -         ..
041011 -    7.  On 090220 0915 Millie radiation and hyperthermia treatment at
041012 -        UCSF. ref SDS B0 0G5I  Millie receivd a copy of notes Chris
041013 -        prepared of a meeting on 090209 with the UCSF medical team on
041014 -        planning Millie's treatment. ref SDS B0 4254
041016 -         ..
041017 -    8.  On 090220 1548 reviewed UCSF memo dated 090209 explaining
041018 -        treatment plan using radiation and hyperthermia for Millie to
041019 -        recover from IBC. ref SDS B1 PR4Y
041021 -         ..
041022 -    9.  On 090220 1548 reviewed BSD paper explaining hyperthermia
041023 -        treatment for recovering from cancer, ref SDS B1 GK6F,
041024 -        including hyperthermia alone...
041025 -
041026 -               hyperthermia................. ref SDS B1 004P
041028 -         ..
041029 -        In combination with....
041030 -
041031 -               radiation.................... ref SDS B1 TT6L
041032 -               chemotherapy................. ref SDS B1 0129
041033 -               biological vaccines.......... ref SDS B1 0164
041035 -         ..
041036 -   10.  On 090223 0237 Millie's letter to medical team....
041037 -
041038 -            a.  Thanks UCSF for submitting memo dated 090209 on
041039 -                planning hyperthermia treatments. ref SDS B2 T47U
041041 -                 ..
041042 -            b.  Requests work plan for radiation treatments.
041043 -                ref SDS B2 3N9J and ref SDS B2 T49U, similar to work
041044 -                plan for hyperthermia.
041046 -                 ..
041047 -            c.  Notes clinical findings that swelled lymph node in left
041048 -                supraclavicular occurred again, ref SDS B2 T48S, and
041049 -                asks if this will be radiated, and what other areas
041050 -                will be radiated. ref SDS B2 T49R
041052 -                 ..
041053 -            d.  Reports upper left arm looks worse than before
041054 -                treatment started, asks if this is expected side
041055 -                effects of radiation and hyperthermia treatment.
041056 -                ref SDS B2 T49Y
041058 -                 ..
041059 -            e.  Reports Cellulitis and lymphadema have been continuing
041060 -                problems on left arm, ref SDS B2 T44R, asks if Keflex
041061 -                should be started to prevent recurrence caused by
041062 -                treatment for IBC? ref SDS B2 T44W
041064 -                 ..
041065 -            f.  Requests picture of Millie getting hyperthermia
041066 -                treatment showing configuration of work process.
041067 -                ref SDS B2 T45S
041069 -         ..
041070 -   11.  On 090223 1428 Millie receives letter from Chris saying UCSF
041071 -        looking for radiation treatment plan. ref SDS B3 PR4Y
041073 -         ..
041074 -   12.  On 090223 1428 Millie receives file of picture showing scope of
041075 -        hyperthermia treatments at UCSF for recovering from IBC.
041076 -        ref SDS B3 GZ4H
041078 -         ..
041079 -   13.  On 090309 Millie had blood draw at Kaiser for test to support
041080 -        examination at UCSF on 090312 to evaluate response to
041081 -        treatment. ref SDS B5 S65I  Included INR test required once a
041082 -        month to verify dose of Coumadin treatments of pulmonary
041083 -        embolism. ref SDS B5 PU7Y  Blood draw flushes port catheter,
041084 -        also, required at least within 5 weeks, when patient not
041085 -        getting chemotherapy treatments, as planned during meeting at
041086 -        Kaiser on 090213. ref SDS A6 6P3F
041088 -         ..
041089 -   14.  On 090310 0351 Millie letter to medical team submits agenda for
041090 -        meeting at UCSF on 090312 0800, ref SDS B6 PR4Y, scheduled by
041091 -        Doctor Rugo on 090210 to evaluate response to treatment with
041092 -        hyperthermia and Doxil to establish local control of IBC,
041093 -        ref SDS A5 XU5N, and begin planning follow on care to treat
041094 -        cancer as chronic disease, ordered by Doctor Johnson at Kaiser
041095 -        on 090213. ref SDS A6 GD3I
041096 -
041097 -        a.  Treatment plan - Millie's invites Doctor Hsu to attend
041098 -            meeting with Breats Care Clinic on 090312 to collaborate on
041099 -            clarifying work plan for Millie to recover from IBC based
041100 -            on evaluation of response to treatment in relatino to
041101 -            original plan for 4 - 6 weeks of radiation treatment.
041102 -            ref SDS B6 O55W
041104 -             ..
041105 -        b.  Slow recovery disappointing becasue breastbone area looks
041106 -            much worse. ref SDS B6 O56X
041108 -             ..
041109 -        c.  Blood test report of labs at Kaiser on 090309 requested for
041110 -            submision to UCSF to support meeting on 090312 that
041111 -            evaluates response to treatment. ref SDS B6 O63Q
041113 -             ..
041114 -        d.  CA 15-3 blood test cancer marker diagnostic only objective
041115 -            metric on response to treatment. ref SDS B6 O63T
041116 -            Significant rise of cancer marker at Kaiser in recent
041117 -            months, and extreme differences with cancer marker at UCSF
041118 -            present challenges evaluating response to treatment.
041119 -            ref SDS B6 O63Y
041121 -             ..
041122 -        e.  Complicated diagnostic status increases requirements for
041123 -            interim assessment of response to teratment. ref SDS B6
041124 -            O64Y
041126 -             ..
041127 -        f.  Anemia seems to be recovering evidenced by labs at Kaiser
041128 -            on 090309 indicating effects of ending treatment on 090122
041129 -            with sunitinib protocol. ref SDS B6 O65R
041131 -             ..
041132 -        g.  Energy still low, but recovering shown by increased hiking
041133 -            at Lafayette reservoir.  May be able to tolerate adding
041134 -            chemotherapy with hyperthermia if needed to recover from
041135 -            IBC. ref SDS B6 O65V
041137 -             ..
041138 -        h.  Shoulder injury recovering with increased range of motion
041139 -            will be demonstrated during examination at Kaiser on 090312
041140 -            1300 in Orthopedics Department. ref SDS B6 O65Y
041142 -             ..
041143 -        i.  INR 2.2 within target range shows eliminating sunitinib
041144 -            chemotherapy treatment on 090122 has caused blood counts to
041145 -            fall back to normal continuing Coumadin treatment for
041146 -            pulminary embolism. ref SDS B6 O66R
041148 -         ..
041149 -   15.  On 090310 1142 called Kaiser to get the report for the blood
041150 -        test on 090309 in time for distribution to the medical team for
041151 -        being prepared to meet at UCSF on 090312. ref SDS B7 JH4H
041152 -        Florida checked the computer and found that CA 15-3 has not yet
041153 -        been posted to the report; she said to call back the next day
041154 -        on 090311 just before noon to arrange for getting the full
041155 -        report. ref SDS B7 QP6H
041157 -         ..
041158 -   16.  On 090310 1735 Millie received a letter from Tara suggesting
041159 -        the meeting tomorrow on 090312 0800 at UCSF be deferred because
041160 -        Doctor Rugo cannot attend, ref SDS B8 PR4Y, which was known on
041161 -        090210 when UCSF called and scheduled the meeting. ref SDS A5
041162 -        XU5N
041164 -         ..
041165 -   17.  On 090311 1517 called Kaiser to get the report with CA 15-3 for
041166 -        the blood test at Kaiser on 090309, and as planned in telecon
041167 -        with Florida the day before on 090310.  Problems contacting
041168 -        someone at Kaiser to implement Kaiser's instructions required
041169 -        being on hold for an hour. ref SDS C0 6Z4F  In the afternoon,
041170 -        Millie received blood test report from Kaiser without CA 15-3
041171 -        diagnostic for evaluating response to treatment at UCSF on
041172 -        090312. ref SDS C0 1U7J
041173 -
041174 -
041175 -
041176 -
041177 -
0412 -

SUBJECTS
Agenda Meeting Scheduled 090312 UCSF Breast Care Clinic and Radiatio

2503 -
250401 -  ..
250402 - Request Guidance from Kaiser on Review at UCSF to Recover from IBC
250403 -
250404 - Follow up ref SDS B8 PR4Y, ref SDS B6 PR4Y.
250405 -
250406 - Yesterday, on 090310 1735 Millie received a letter from Tara
250407 - responding to the agenda on a meeting scheduled by UCSF for tomorrow
250408 - on 090312 evaluating response to treaement, and which was submitted to
250409 - the medical team in a letter earlier on 090312 0351. ref SDS B6 PR4Y
250411 -  ..
250412 - Since Tara asks whether the meeting should be deferred until Doctor
250413 - Rugo can attend, and since Doctor Rugo asked her assistant on 090210
250414 - to schedule the meeting on 090312 with Tara because the doctor would
250415 - not be available, there is an implication that Tara may feel
250416 - uncomfortable about making an examination without having Doctor Rugo
250417 - available to confirm findings.
250419 -  ..
250420 - Millie sent the following letter to Kaiser asking for guidance on
250421 - whether to proceed with the meeting, or defer until Doctor Rugo is
250422 - available, which at this time is unknown.
250423 -
250424 -    1.  Subject: Blood Test report for Meeting at UCSF tomorrow
250425 -        Date: Wed, 11 Mar 2009 10:53:20 -0700
250433 -         ..
250434 -    2.  I am on my way to a weekly meeting at the Wellness Community.
250436 -         ..
250437 -    3.  Rod called your office this morning to coordinate getting the
250438 -        report for the blood test I had on Monday, to prepare for the
250439 -        meeting tomorrow at UCSF, ref SDS C0 6Z4F, as set out in the
250440 -        letter to the medical team yesterday on March 10. ref SDS B6
250441 -        PR4Y
250443 -         ..
250444 -    4.  Think he talked to Lupe (not sure about the name), but she said
250445 -        you have a new system, and so we cannot reach Arlette, Florida,
250446 -        Bella, et al, ref SDS C0 G68F, to follow up arrangements which
250447 -        Florida discussed yesterday. ref SDS B7 8F60
250448 -
250449 -            [On 090325 0830 primary care physician disappointed by
250450 -            continual delays submittng data to UCSF, and notes conflict
250451 -            with requirements to streamline delivery of care in order
250452 -            to treat Millie's cancer at this time as a chronic disease.
250453 -            ref SDS C5 RB3G
250455 -         ..
250456 -    5.  My meeting at the Wellness Community ends at 1230.  I wanted to
250457 -        swing by the hospital and pickup the report with CA 15-3 added,
250458 -        and ANC entered, as planned in a call with Florida yesterday.
250459 -        seems that since yesterday, you have implemented a new system,
250460 -        and so cannot talk to Florida today to confirm arrangements.
250461 -        ref SDS C0 G697  Since the front desk and telephones are closed
250462 -        at lunch time until 1330, wanted to ask Florida to leave the
250463 -        report in an envelope with my name on the counter at the front
250464 -        desk.
250466 -         ..
250467 -    6.  Alternatively, I could use the white phone in the lobby next
250468 -        the door leading into the Chemotherapy Clinic.
250470 -         ..
250471 -    7.  Since I will be tied up until 1230, can you please call Rod and
250472 -        verify arrangements.  Recall you two planned in the meeting on
250473 -        090213 to have a telecon, so this would be a good time for that
250474 -        discussion on progress of referral for radiation and
250475 -        hyperthermia at UCSF.
250476 -
250477 -            [On 090311 1431 Millie's letter to medical team thanks
250478 -            Kaiser for support with getting the report for the lab on
250479 -            090309 to support the meeting at UCSF on 090312.
250480 -            ref SDS B9 5Z9K
250482 -         ..
250483 -    8.  On 090210 Doctor Rugo scheduled a meeting for tomorrow, 090312
250484 -        0800.  She later advised that her schedule changed and asked me
250485 -        to meet with Tara alone. ref SDS A5 XU5N  Tara is an excellent
250486 -        NP, she has done all the examinations since last September,
250487 -        when Brigid was called up for military duty of 1 year.  Tara is
250488 -        very familiar with my condition.  During the meeting on 090129
250489 -        she expressed a lot of confidence in Doctor Rugo's prescription
250490 -        to recover local control with hyperthermia and doxil, and said
250491 -        she has treated other patients with IBC who have recovered with
250492 -        hyperthermia [cited in the letter to the medical team on
250493 -        090130. ref SDS 66 4S8O].  Based on this experience, I agred
250494 -        [during the call from Lena on 090210] to meet with Tara
250495 -        tomorrow. ref SDS A5 1X7W
250497 -         ..
250498 -    9.  I want to get an interim assessment of progress after 3 weeks
250499 -        of treatment, scheduled for 4 - 6 weeks [called out in the
250500 -        agenda for the meeting, presented in the letter to the medical
250501 -        team yesterday on 090310 0351, ref SDS B6 O64Y].  How has the
250502 -        patient progressed in relation to expectations on 090129 [as
250503 -        reported on 090130. ref SDS 66 HK3V  Since the treatment was
250504 -        changed from the original proposal to use hyperthermia with
250505 -        Doxil, to instead use lower dose radiation [reported on 090205,
250506 -        ref SDS A0 EY5F], what considerations can be made to add Doxil
250507 -        or anotehr agent?
250509 -         ..
250510 -   10.  I also want to follow up your suggestion on 090213 for UCSF to
250511 -        begin thinking about follow on planning to treat my cancer as a
250512 -        "chronic disease," ref SDS A6 GD3I, I think is the phrase you
250513 -        used.
250515 -         ..
250516 -   11.  As you can see, Tara sent me a letter yesterday afternoon,
250517 -        saying Doctor Rugo is out of town, which I already knew [from
250518 -        telecon on 090210 scheduling the meeting on 090312, ref SDS A5
250519 -        XU5N], and that she, Tara, cannot discuss treatment options, so
250520 -        she asks if I want to proceed with the meeting? ref SDS B8 PR4Y
250521 -
250522 -            [On 090311 1431 Millie's letter to UCSF responds to Tara's
250523 -            letter on 090310 1935 proposing to defer meeting on 090312,
250524 -            and Millie requests date to reschedule meeting with Doctor
250525 -            Rugo for planning treatment of Millie's IBC as a chronic
250526 -            disease. ref SDS B9 O15X
250528 -         ..
250529 -   12.  This sounds like she does not want to take responsibility for
250530 -        doing a meeting without the doctor.  She has done many of these
250531 -        meetings without the doctor previously.  When Doctor Rugo
250532 -        attends a meeting, she spends from 5 - 15 minutes, to optimize
250533 -        use of her expertise treating a lot of patients.  This requires
250534 -        careful examination, and analysis of patient presentation.
250535 -        Tara is very good doing examinations, i.e. thorough in her
250536 -        reporting.  It is difficult to see how progress review at the
250537 -        75% mark of the treatment plan, can do anything but assist
250538 -        Doctor Rugo, when she has time to think about my case.
250540 -         ..
250541 -   13.  My inclination is to have the meeting, but I am concerned about
250542 -        putting Tara in an uncomfortable position.  I got the feeling
250543 -        from the meeting on 090129 and earlier email traffic that there
250544 -        were some issues surrounding changing my last treatment.
250545 -        Recall there were delays at UCSF, which may have placed us in a
250546 -        difficult position [see case study patient history on 090204.
250547 -        ref SDS 99 MN5I].
250549 -         ..
250550 -   14.  In any case, could you call Rod (************) and discuss your
250551 -        sense about doing the meeting tomorrow, or standing down, as
250552 -        Tara suggests.
250553 -
250554 -            [On 090311 1431 Kaiser did not respond to Millie's request
250555 -            for support, ref SDS B9 5Z9K, Millie therefore responded to
250556 -            Tara's letter on 090310 1935, which proposed deferring
250557 -            meeting on 090312, and Millie requests date to reschedule
250558 -            meeting with Doctor Rugo for planning treatment of Millie's
250559 -            IBC as a chronic disease. ref SDS B9 O15X
250561 -             ..
250562 -            [On 090312 0800 meeting at UCSF took place; complexity
250563 -            compounded evaluating Millie's response to treatment for
250564 -            prescribing care after radiation and hyperthermia, because
250565 -            interim analysis shows worsening symptoms signal recovery
250566 -            from strong reaction to radiation indicates IBC receiving
250567 -            significant treatment. ref SDS C1 9L7K  Without cancer
250568 -            marker CA 15-3 results for the blood test on 090309, the
250569 -            only metric of recovery is visual observation based on
250570 -            experience. ref SDS C1 YX5F  Tara clarified that she has
250571 -            very limited experience caring for patients with IBC who
250572 -            have been treated with radiation and hyperthermia in the
250573 -            UCSF Radication Oncology Department, ref SDS C1 SP8J;
250574 -            Doctor Hsu cited extensive experience treating IBC patients
250575 -            with radiation and hyperthermia, and advised that
250576 -            examination shows rising IBC symptoms are actually evidence
250577 -            of side effects from treatment with radiation and
250578 -            hyperthremia, and this worsening condition will get worse,
250579 -            but eventually recover, and further signals expected
250580 -            recovery from IBC. ref SDS C1 F84U
250582 -         ..
250583 -   15.  I will stop by on the way home from the Community Wellness
250584 -        meeting and get the blood test report.
250585 -
250586 -            [...in another record today on 090311 Millie went to Kaiser
250587 -            and got the report for the blood test at Kaiser on 090309,
250588 -            but without the CA 15-3 diagnostic needed for the meeting
250589 -            at UCSF on 090312 to evaluate response to treatment.
250590 -            ref SDS C0 1U7J
250592 -             ..
250593 -            [On 090325 0830 primary care physician disappointed by
250594 -            continual delays submittng data to UCSF, and notes conflict
250595 -            with requirements to streamline delivery of care in order
250596 -            to treat Millie's cancer at this time as a chronic disease.
250597 -            ref SDS C5 RB3G
250598 -
250599 -
250605 -
250606 -
250607 -
250608 -
250609 -
250610 -
250611 -
250612 -
250613 -
250614 -
250615 -
250616 -
250617 -
2507 -