THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
rodwelch@pacbell.net


S U M M A R Y


DIARY: March 30, 2009 11:51 PM Monday; Rod Welch

Millie letter to medical team reporting pain relief radiation side effects
explained during meeting at UCSF.

1...Summary/Objective
2...Pain Relief Radiation Side Effects
3...Commend Glenna Support Patient Assistant Role
4...Patient Assistant Role Supported by UCSF


..............
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CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS A4 0000. ref SDS A3 0000.
040502 -
040503 -
040504 -
040505 -
040506 -
040507 -
040509 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - The letter today follows up patient history...
040902 -
040903 -        1.  Examination at Kaiser found significant
040904 -            recovery with sunitinib protocol
040905 -            at UCSF........................... 081219, ref SDS 38 QW5J
040907 -             ..
040908 -        2.  Primary care physician calls about
040909 -            Millie's fall and treatment in ER for
040910 -            separated shoulder, and explains rise
040911 -            in Millie's cancer marker signals
040912 -            severe relapse for the 6th time,
040913 -            and Millie needs immediate treatment
040914 -            for her cancer as chronic
040915 -            disease........................... 090123, ref SDS 48 RK6O
040917 -             ..
040918 -        3.  Sudden reversal with severe relapse
040919 -            of IBC that requires immediate
040920 -            change of treatment reported
040921 -            from examination at
040922 -            UCSF.............................. 090130, ref SDS 51 4S8O
040924 -             ..
040925 -        4.  Doctor Rugo prescribes immediate
040926 -            treatment at UCSF in radiation
040927 -            oncology department for
040928 -            7th relapse....................... 090130, ref SDS 51 TZ6H
040930 -             ..
040931 -        5.  Urgent treatment was delayed a week
040932 -            due to communication problems
040933 -            at UCSF........................... 090130, ref SDS 51 AY8Q
040935 -             ..
040936 -        6.  Approval for Kaiser referral to UCSF
040937 -            was delayed by documentation
040938 -            errors............................ 090202, ref SDS 53 SP6H
040940 -             ..
040941 -        7.  Kaiser expedites referral authorization
040942 -            in order for UCSF to provide urgent
040943 -            treatment quickly enough for
040944 -            Millie to recover................. 090202, ref SDS 52 LC7H
040946 -             ..
040947 -        8.  UCSF proposes 3-week delay to begin
040948 -            planning Millie's treatment for
040949 -            recovering from 6th relapse of
040950 -            of IBC............................ 090202, ref SDS 53 SP7M
040952 -             ..
040953 -        9.  Doctor Rugo notifies medical team
040954 -            Millie needs urgent treatment quickly
040955 -            in time to be effective recovering
040956 -            from 6th relapse of
040957 -            IBC............................... 090202, ref SDS 54 Y15J
040959 -             ..
040960 -       10.  Millie's letter to UCSF implements Doctor
040961 -            Johnson's requests for UCSF strategy
040962 -            to treat Millie's cancer as a
040963 -            chronic disease................... 090203, ref SDS 55 278T
040965 -             ..
040966 -       11.  Doctor Rugo's letter explains planning
040967 -            to evaluate response to hyperthermia
040968 -            treatment and arrange continuing
040969 -            care based on another
040970 -            CT scan........................... 090204, ref SDS 57 278T
040972 -             ..
040973 -       12.  UCSF advances Millie's care in Radiation
040974 -            Oncology Department 3 weeks; scope of
040975 -            radiation and hyperthermia evaluated
040976 -            by Dcotor Hsu and Doctor
040977 -            Chang............................. 090205. ref SDS 59 0001
040979 -             ..
040980 -       13.  CT and xray tests taken, and layout
040981 -            of treatment fields performed to
040982 -            build molds for Millie's
040983 -            radiation......................... 090209. ref SDS 63 9R61
040985 -             ..
040986 -       14.  Examination primary care physician
040987 -            at Kaiser finds severe progression
040988 -            of IBC in 6th
040989 -            relapse........................... 090213, ref SDS 65 4W5I
040991 -             ..
040992 -       15.  Millie lucky to survive stage IV cancer
040993 -            for 8 years because cancer mutates to
040994 -            defeat treatments; and medical maladies
040995 -            increase which makes recovery
040996 -            more difficult to
040997 -            achieve........................... 090213, ref SDS 65 NY7L
040999 -             ..
041000 -       16.  Complexity of case management grows
041001 -            during long term survival prevents
041002 -            keeping a well ordered record
041003 -            essential for effective
041004 -            care.............................. 090213, ref SDS 65 9L8O
041006 -             ..
041007 -       17.  Emotional trauma occurs from surprise
041008 -            by medical professionals that Kaiser
041009 -            and UCSF have enabled long term surivial
041010 -            for a disease that normally is
041011 -            difficult to control.............. 090213, ref SDS 65 ML4I
041013 -             ..
041014 -       18.  Communication leverages synergy
041015 -            for Millie's care at Kaiser and UCSF
041016 -            which helps prevent problems from
041017 -            "falling through the cracks; fewer
041018 -            mistakes, and timely response
041019 -            helps the medical team
041020 -            increase longevity,
041021 -            also seems very
041022 -            annoying.......................... 090213, ref SDS 65 FZ4H
041024 -             ..
041025 -       19.  Doctor urges proactive management to
041026 -            plan Millie's next treatment because
041027 -            there will be less time to recover
041028 -            before cancer gets out of control
041029 -            for Millie's next
041030 -            relapse........................... 090213, ref SDS 65 UP6L
041032 -             ..
041033 -       20.  Millie's efforts the past 8 years to
041034 -            combine medical treatment with vigorous
041035 -            exercise was supported by research
041036 -            showing exercise can be a strong
041037 -            component of cancer
041038 -            care.............................. 090213, ref SDS 65 GC40
041040 -             ..
041041 -       21.  Indian fable illustrates long-term survival
041042 -            getting continuous treatment for cancer
041043 -            becomes increasingly difficult to perform
041044 -            complex clinical, logistical, and financial
041045 -            case management; study of Millie's patient
041046 -            history shows level of effort to maintain
041047 -            well ordered record for effective
041048 -            management increases exponentially
041049 -            into a crushing burden
041050 -            for patients and
041051 -            providers......................... 090213, ref SDS 65 IG5O
041053 -             ..
041054 -       22.  Graph prepared by primary care physician
041055 -            shows Millie's good fortune surviving a
041056 -            very aggressive cancer with relatively
041057 -            high quality of life into an 8th year
041058 -            of continuous treatment that normally
041059 -            causes early demise due to emotional
041060 -            trauma and clincial failures from
041061 -            complex case management........... 090213, ref SDS 65 4W72
041063 -             ..
041064 -       23.  Millie felt life was slipping away in
041065 -            October when the 5th relapse was diagnosed
041066 -            leading Millie to ask what was going to
041067 -            happen to her; Doctor Rugo provided
041068 -            encouragement saying "We're not
041069 -            going to let anything happen
041070 -            to you"........................... 090213, ref SDS 65 F148
041072 -             ..
041073 -       24.  Collaboration between Kaiser and UCSF
041074 -            combines experience with research;
041075 -            communication optimizes Millie's care
041076 -            beating the odds for long-term survival
041077 -            by integrating Kaiser's team care
041078 -            practice with UCSF model
041079 -            of comprehensive
041080 -            care.............................. 090213, ref SDS 65 685I
041082 -             ..
041083 -       25.  Multiple relapse of cancer causes cells
041084 -            to mutate into disease that resists
041085 -            treatment; Millie surviving 6 relapses
041086 -            needs highly specialized care and
041087 -            so should ask Doctor Rugo to begin
041088 -            planning for the next relapse
041089 -            to treat Millie's cancer as
041090 -            a chronic disease................. 090213, ref SDS 65 R75G
041092 -             ..
041093 -       26.  Doctor Rugo has responded by scheduling
041094 -            a meeting with Millie at UCSF on
041095 -            090312............................ 090213, ref SDS 65 6P7G
041097 -             ..
041098 -       27.  Doctor Johnson underscored importance
041099 -            timely care for Millie by offering
041100 -            religious perspective on transition
041101 -            from a vigorous life that may end
041102 -            for Millie in less than a
041103 -            year.............................. 090213, ref SDS 65 646L
041105 -             ..
041106 -       28.  Hospice care helps patients and families
041107 -            cope with final days of life without
041108 -            suffering significant physical
041109 -            and emotional pain................ 090213, ref SDS 65 VW63
041111 -             ..
041112 -       29.  Life ending scenarios have been presented
041113 -            to Millie many times the past 5 years;
041114 -            case study reflects Millie's physical
041115 -            resiliance and strength of character
041116 -            that enables exceptional longevity
041117 -            for her aggressive
041118 -            cancer............................ 090213, ref SDS 65 L19H,
041120 -             ..
041121 -       30.  Collaboration on case management for
041122 -            long-term survivors of cancer becomes
041123 -            frustrating because everybody loses
041124 -            control of increasingly
041125 -            complex medical
041126 -            records........................... 090213, ref SDS 65 JL9L
041128 -             ..
041129 -       31.  Lab and CT test reports illustrate
041130 -            frustration, because providers do not
041131 -            have enough time to enter results
041132 -            from other doctorsrs in the medical
041133 -            chart, because doctors prefer to
041134 -            rely on local diagnostics
041135 -            rather than referral
041136 -            data.............................. 090213, ref SDS 65 NY4H
041138 -             ..
041139 -       32.  Cancer marker CA 15-3 wide disparities
041140 -            between Kaiser and UCSF illustrates
041141 -            why doctor's rely on local data
041142 -            rather than referral
041143 -            diagnostics....................... 090213, ref SDS 65 A46O
041145 -             ..
041146 -       33.  Case management takes a lot of will
041147 -            power for due diligence to
041148 -            maintain a well ordered
041149 -            record............................ 090213, ref SDS 65 J27J
041151 -             ..
041152 -       34.  Meeting at Kaiser changed to 4 week
041153 -            interval, rather than 8, as done the
041154 -            past 2 years, provides effective support
041155 -            for UCSF to start next treatment in
041156 -            time to avoid losing control of
041157 -            Millie's cancer................... 090213, ref SDS 65 QX5O
041159 -             ..
041160 -       35.  Millie requests explanation of treatment
041161 -            plan.  Doctor Rugo's letter to Kaiser on
041162 -            090129 discussed hyperthermia with Doxil,
041163 -            reported on 090130. Has the plan changed
041164 -            to use "lower dose" radiation rather
041165 -            than Doxil.  Will both be
041166 -            used, or some other
041167 -            agent............................. 090218, ref SDS 66 TH5W
041169 -             ..
041170 -       36.  Millie reports to medical team meeting
041171 -            with Doctor Johnson at Kaiser on 090213
041172 -            was optimistic Millie might have 3 - 6
041173 -            months of recovery, but will need
041174 -            treatment from Doctor Rugo for
041175 -            cancer as a "chronic
041176 -            disease".......................... 090218, ref SDS 66 TH6U
041178 -             ..
041179 -       37.  Millie requests reponse from UCSF to the
041180 -            letter on 090209 requesting explanation
041181 -            of treatments for side effects from
041182 -            radiation and hyperthermia described by
041183 -            Doctor Hsu during the meeting on
041184 -            090205. Does the treatment
041185 -            plan address side effects
041186 -            prospectively..................... 090218, ref SDS 66 TH7V
041188 -             ..
041189 -       38.  Radiation and hyperthermia begins
041190 -            at UCSF for Millie to recover from
041191 -            6th relapse of
041192 -            IBC............................... 090219, ref SDS 67 E57G
041194 -             ..
041195 -       39.  Millie's letter to UCSF requests
041196 -            explanation of radiation and hyperthermia
041197 -            treatments for recovering from
041198 -            IBC............................... 090220, ref SDS 68 EA4Q
041200 -             ..
041201 -       40.  Hyperthermia treatment planning
041202 -            on 090209 report received
041203 -            from UCSF......................... 090220, ref SDS 69 PR4Y
041205 -             ..
041206 -       41.  Hyperthermia science, theraputic
041207 -            rationale and applications with
041208 -            other modalities presented in
041209 -            BSD professional paper received
041210 -            from UCSF......................... 090220, ref SDS 69 GK6F
041212 -             ..
041213 -       42.  Millie's letter to UCSF requests work
041214 -            plan for radiation treatments to
041215 -            recover from 6th relapse of
041216 -            IBC............................... 090223, ref SDS 70 3N9J
041217 -            and asks for scientific paper
041218 -            using radiation to treat
041219 -            IBC............................... 090223, ref SDS 70 T49U
041221 -             ..
041222 -       43.  Radiation combined with hyperthermia
041223 -            treatment plan received from
041224 -            UCSF.............................. 090226, ref SDS 71 D452
041226 -             ..
041227 -       44.  Blood test at Kaiser for meeting
041228 -            at UCSF on 090312 to evaluate
041229 -            effectiveness of radiation
041230 -            and hyperthermia after
041231 -            3 weeks........................... 090309, ref SDS 73 6Z4F
041233 -             ..
041234 -       45.  Agenda submitted to medical team to
041235 -            be prepared for productive meetings
041236 -            at UCSF scheduled on 090312 to evaluate
041237 -            response to treatment after getting
041238 -            3 weeks of radiation and hyperthermia
041239 -            to recover from 6th relapse
041240 -            of IBC............................ 090310, ref SDS 74 PR4Y
041242 -             ..
041243 -       46.  Called Kaiser to get results of blood
041244 -            test on 090309 for submission to medical
041245 -            team for being prepared to meet at
041246 -            UCSF on 090312; Florida says results
041247 -            pending from lab; says to call back
041248 -            on 090311 to get the report
041249 -            for distribution.................. 090310, ref SDS 75 JH4H
041251 -             ..
041252 -       47.  UCSF letter from Tara proposed canceling
041253 -            meeting scheduled by Doctor Rugo for
041254 -            090312 to evaluate response to
041255 -            treatment, and also Millie's
041256 -            concern about growing
041257 -            side effects...................... 090310, ref SDS 76 PR4Y
041259 -             ..
041260 -       48.  Millie letter to primary care physician
041261 -            at Kaiser coordinates getting report
041262 -            for blood test on 090309 for
041263 -            meeting at UCSF on
041264 -            090312............................ 090311, ref SDS 77 S84F
041266 -             ..
041267 -       49.  Blood test report for Millie's lab on
041268 -            090209 was not submitted by Kaiser to
041269 -            UCSF due to telephone and fax machine
041270 -            problems; UCSF relied on backup
041271 -            copy hand delivered by
041272 -            Millie............................ 090312, ref SDS 80 XE3K
041274 -             ..
041275 -       50.  Examination at UCSF Breast Care Clinic
041276 -            finds signs of recovery from 6th relapse
041277 -            of IBC; Millie responding well after
041278 -            3 weeks of treatment with radiation
041279 -            and hyperthermia; severe side
041280 -            effects observed.................. 090312, ref SDS 80 YX9F
041282 -             ..
041283 -       51.  Cancer marker CA 15-3 missing from
041284 -            blood test for Millie's lab at Kaiser
041285 -            on 090309; missing diagnostic
041286 -            complicates evaluating
041287 -            response to treatment............. 090312, ref SDS 80 YX5F
041289 -             ..
041290 -       52.  Doctor Rugo planning to implement
041291 -            request by Doctor Johnson at Kaiser
041292 -            for UCSF to treat Millie's cancer
041293 -            as a chronic disease.............. 090312, ref SDS 80 QQ9L
041295 -             ..
041296 -       53.  Examination at UCSF Radiation Oncology
041297 -            department concurs Millie recovering
041298 -            from 6th relapse of IBC by responding
041299 -            to radiation and
041300 -            hyperthermia...................... 090312, ref SDS 80 F88K
041301 -            discloses side effects severely
041302 -            blistering skin will worsen for a
041303 -            month, and then gradually
041304 -            recover........................... 090312, ref SDS 80 F860
041305 -            that radiation and hyperthermia
041306 -            will continue to destroy cancer cells
041307 -            for weeks and even months after ending
041308 -            treatments on
041309 -            090317............................ 090312, ref SDS 80 VL4O
041311 -             ..
041312 -       54.  After meeting with UCSF at 0800, called
041313 -            Kaiser at 1437; was on "hold" for 90
041314 -            minutes; Cisi in the Chemotherapy
041315 -            Clinic came online and advised that
041316 -            CA 15-3 was not listed in Kaiser's
041317 -            for Millie's lab on
041318 -            090309............................ 090312, ref SDS 81 JO8O
041320 -             ..
041321 -       55.  Millie's letter to medical team reports
041322 -            productive meetings at UCSF on 090312
041323 -            with favorable findings that Millie
041324 -            is recovering from 6th
041325 -            relapse of
041326 -            IBC............................... 090313, ref SDS 82 Q49L
041328 -             ..
041329 -       56.  Millie's final treatment at UCSF with
041330 -            radiation and hyperthermia to
041331 -            recover from 6th relapse
041332 -            IBC............................... 090317, ref SDS 84 9L7K
041334 -             ..
041335 -       57.  Millie received at UCSF orientation and
041336 -            medications for home care to treat severe
041337 -            side effects from radiation treatments
041338 -            that will get worse for a few weeks
041339 -            before starting to get
041340 -            better............................ 090317, ref SDS 84 M442
041342 -             ..
041343 -       58.  Arlette checked the computer and
041344 -            concluded a mistake occurred at the
041345 -            lab not testing for the cancer marker
041346 -            on the blood test for 090309.  Arlette
041347 -            entered a supplemental order for
041348 -            Millie to get another blood
041349 -            draw at no charge
041350 -            later today....................... 090317, ref SDS 85 Y04R
041352 -             ..
041353 -       59.  Kaiser reported CA 15-3 251 for blood
041354 -            test on 090317 that corrected problems
041355 -            with lab on 090309 which omitted cancer
041356 -            marker needed for the meeting at UCSF
041357 -            on 090312 to evaluate response to
041358 -            treatment; results today indicate
041359 -            strong recovery from 6th relapse
041360 -            of IBC............................ 090323, ref SDS 86 Y077
041362 -             ..
041363 -       60.  Millie's letter notifies medical team
041364 -            radiation and hyperthermia treatments
041365 -            were completed on 090317; submits agenda
041366 -            for meeting today evaluating response
041367 -            to treatment with, and recovery from
041368 -            side effects from radiation
041369 -            and hyperthermia on
041370 -            referral to
041371 -            UCSF.............................. 090324, ref SDS 87 PR4Y
041373 -             ..
041374 -       61.  Meeting at Kaiser reveiw response to
041375 -            treatment at UCSF for 6th relapse of
041376 -            cancer, planning arrangements
041377 -            for treating next
041378 -            relapse........................... 090325, ref SDS 88 E54L
041380 -             ..
041381 -       62.  Shoulder injury recovering on schedule
041382 -            following treatment in ER on 090122,
041383 -            physical therapy; increased energy
041384 -            after ending chemotherapy enables
041385 -            faster recovery with
041386 -            exercise.......................... 090325, ref SDS 88 YU6K
041388 -             ..
041389 -       63.  Examination finds strong response to
041390 -            treatment with radiation and hyperthermia
041391 -            at UCSF ended on 090317 aligns with
041392 -            significant decline in cancer
041393 -            marker reversing continuous
041394 -            rising tread for the
041395 -            past year......................... 090325, ref SDS 88 D452
041397 -             ..
041398 -       64.  Disease trajectory graph shows Millie
041399 -            may be nearing a point of rapid
041400 -            decline with next relapse
041401 -            of cancer......................... 090325, ref SDS 88 P39M
041403 -             ..
041404 -       65.  Hospice care can be investigate in order
041405 -            to be prepared for smooth transition
041406 -            as patient enters decline phase
041407 -            of cancer trajectory.............. 090325, ref SDS 88 JS5I
041409 -             ..
041410 -       66.  Streamlined referral procedures
041411 -            delivering care required in order
041412 -            for the medical team to be
041413 -            prepared treating cancer
041414 -            as a chronic
041415 -            disease........................... 090325, ref SDS 88 P43G
041417 -             ..
041418 -       67.  Stress increases beyond capacity to cope
041419 -            managing chronic disease with procedures
041420 -            designed for routine cancer care;
041421 -            doctor approves Millie for
041422 -            vacation to get needed
041423 -            rest.............................. 090325, ref SDS 88 M35H
041425 -             ..
041426 -       68.  Lab mistakes and delays hamper delivering
041427 -            referral care in time to be effective
041428 -            treating stage IV cancer; patient facing
041429 -            7th relapse at risk; providers under
041430 -            stress angry that someone is
041431 -            changing doctor's orders
041432 -            for patient care.................. 090325, ref SDS 88 RB3G
041434 -             ..
041435 -       69.  Lab mistakes and delays chronic problems
041436 -            prevent treating cancer as chronic
041437 -            disease on referral to UCSF
041438 -            case study........................ 090325, ref SDS 88 KZ6N
041440 -             ..
041441 -       70.  Cancer chronic disease timely treatment
041442 -            essential for Millie's 7th relapse
041443 -            stage IV IBC; Kaiser has no chemotherapy
041444 -            agents for Millie's narrow patient profile
041445 -            triple negative; prescribes care
041446 -            on referral to UCSF;
041447 -            case study........................ 090325, ref SDS 88 L15M
041449 -             ..
041450 -       71.  Pain relief needed; Millie suffering
041451 -            physically and emotionally from severe
041452 -            radiation side effects; pain and
041453 -            suffering will get worse for several
041454 -            more weeks until Millie begins to recover
041455 -            from radiation burn; Doctor Johnson
041456 -            prescribes zink and Domeboro supplement
041457 -            treatment prescribed at UCSF for
041458 -            severe radiation side
041459 -            effects........................... 090325, ref SDS 88 P39I
041461 -             ..
041462 -       72.  Medical tests ordered at Kaiser for
041463 -            examinations at UCSF on planning
041464 -            Millie's treatment for the
041465 -            next relapse of
041466 -            IBC............................... 090325, ref SDS 88 P36O
041468 -             ..
041469 -       73.  Medical tests ordered 10 days prior to
041470 -            meetings at UCSF allows enough time
041471 -            for correcting mistakes and expediting
041472 -            delays so that data is delivered
041473 -            when needed....................... 090325, ref SDS 88 LX5I
041475 -             ..
041476 -       74.  Patient asked to coordinate on correcting
041477 -            mistakes in CT Department by consolidating
041478 -            findings in a single report, rather than
041479 -            publising multiple reports for
041480 -            each test......................... 090325, ref SDS 88 P53O
041482 -             ..
041483 -       75.  Letter to Kaiser confirms understandings
041484 -            from meeting on 090325 that reported a
041485 -            favorable response after completeing
041486 -            treatment at UCSF on 090317 with
041487 -            radiation and hyperthermia
041488 -            protocol.......................... 090326, ref SDS 89 5V7O
041490 -             ..
041491 -       76.  Kaiser plans visual examination with
041492 -            CT tests to evaluate response to treatment
041493 -            at UCSF with hyperthermia and
041494 -            radiation......................... 090326, ref SDS 90 1V4N
041496 -             ..
041497 -       77.  Millie submits patient history showing
041498 -            Kaiser has had problems relying on visual
041499 -            examination and CT tests to assess IBC;
041500 -            she submits research showing enhanced
041501 -            MRI is reported to be effective
041502 -            supplementing visual and
041503 -            CT test modalities................ 090326, ref SDS 91 5V7O
041505 -             ..
041506 -       78.  Millie's letter asks about progress
041507 -            reviewing research to solve problem
041508 -            of diminishing treatments for
041509 -            Millie's expanding patient
041510 -            profile........................... 090326, ref SDS 91 QM3V
041512 -             ..
041513 -       79.  Millie's letter notifies medical team
041514 -            meetings scheduled at UCSF on 090423
041515 -            will evaluate response to radiation and
041516 -            hyperthermia treatments that ended
041517 -            on 090317, and develop plan to
041518 -            Millie's cancer as a chronic
041519 -            disease........................... 090326, ref SDS 89 DW4R
041521 -             ..
041522 -       80.  Millie's letter notifies medical team
041523 -            Doctor Johnson scheduled lab and CT
041524 -            tests on 090413 in order to have enough
041525 -            time to submit reports to UCSF
041526 -            for preparing to have a productive
041527 -            meeting on 090423 that will
041528 -            plan next treatments.............. 090326, ref SDS 89 DW5Y
041530 -             ..
041531 -       81.  Millie's letter thanks Doctor Stritter
041532 -            for continued interest in her case, and
041533 -            advises that Stritter 2nd opinion research
041534 -            to solve problems of diminishing treatments
041535 -            for Millie's expading patient profile
041536 -            were submitted to the medical
041537 -            team.............................. 090326, ref SDS 92 1V4N
041539 -             ..
041540 -       82.  Millie's letter reports to Doctor
041541 -            Stritter suffering caused by radiation
041542 -            side effects; does not feel well
041543 -            after 4 weeks of intense
041544 -            treatments........................ 090326, ref SDS 92 PX6Y
041546 -             ..
041547 -       83.  Doctor Johnson responds to Millie's
041548 -            submission of research showing enhanced
041549 -            MRI technology can effectively supplement
041550 -            visual and CT modalities to assess
041551 -            response to treatment of IBC 6th
041552 -            relapse, saying he will talk about
041553 -            it at the next visit in 6
041554 -            weeks............................. 090326, ref SDS 93 T64N
041556 -             ..
041557 -       84.  Doctor Johnson responds to Millie's
041558 -            request for progress reviewing research
041559 -            to solve problems of diminishing treatments
041560 -            for expanding patient profile, saying
041561 -            he will talk about it at the
041562 -            next visit in 6
041563 -            weeks............................. 090326, ref SDS 93 T64N
041565 -             ..
041566 -       85.  Millie letter from Doctor Stritter asks
041567 -            to be notified about progress considering
041568 -            2nd opinion options for solving problem
041569 -            of diminishing treatments for
041570 -            Millie's 7th relapse
041571 -            of IBC............................ 090326, ref SDS 94 Q16O
041573 -             ..
041574 -       86.  Millie letter to medical team reports
041575 -            rising pain from radiation side effects,
041576 -            asks about using Domeboro
041577 -            to supplement
041578 -            silvadene......................... 090328, ref SDS 95 4S9W
041580 -             ..
041581 -       87.  Millie reports continued recovery from
041582 -            IBC after completing radiation and
041583 -            hyperthermia 2 weeks
041584 -            earlier........................... 090328, ref SDS 95 4S4V
041586 -             ..
041587 -       88.  Doctor Hsu letter to Millie schedules
041588 -            examination to relieve pain and suffering
041589 -            side effects from radiation side
041590 -            effects following treatment
041591 -            to recover from IBC that
041592 -            ended on 090317................... 090328, ref SDS 96 H27I
041594 -             ..
041595 -       89.  Millie's letter to UCSF confirms meeting
041596 -            with Doctor Hsu on 090401 to get pain
041597 -            relief from radiation side
041598 -            effects........................... 090328, ref SDS 97 H27I
041600 -             ..
041601 -       90.  Doctor Hsu asks Millie to change time
041602 -            of meeting on 090401 to afternoon
041603 -            to accomodate tumor board
041604 -            meeting........................... 090328, ref SDS 98 SA4J
041606 -             ..
041607 -       91.  Millie letter to UCSF asks Doctor Hsu
041608 -            to meet on Monday 090330, rather than
041609 -            Wedensday 090401 to expedite
041610 -            pain relief....................... 090328, ref SDS 99 CM5K
041612 -             ..
041613 -       92.  Doctor Hsu agrees to advance examination
041614 -            of Millie for prescribing pain relief
041615 -            proposes meeting on 090330 in the
041616 -            afternoon......................... 090328, ref SDS A0 4Z6I
041618 -             ..
041619 -       93.  Millie letter to UCSF asks to meet on
041620 -            090330 0800 rather than in the
041621 -            afternoon to expedite getting
041622 -            pain relief....................... 090328, ref SDS A1 MR3K
041624 -             ..
041625 -       94.  Doctor Hsu letter schedules meeting
041626 -            at UCSF 090330 1200 to expedite pain
041627 -            relief for Millie from radiation
041628 -            side effects...................... 090328, ref SDS A2 F34O
041630 -             ..
041631 -       95.  Millie letter confirms meeting at
041632 -            UCSF 090330 1200 to expedite pain
041633 -            relief from radiation
041634 -            side effects...................... 090328, ref SDS A4 W55N
041636 -             ..
041637 -       96.  Meeting at UCSF Doctor Hsu advises
041638 -            Millie shows response to treatment
041639 -            with radiation and hyperthermia
041640 -            treatments........................ 090330, ref SDS A4 E54L
041642 -             ..
041643 -       97.  UCSF prescribes increase Silvadene
041644 -            1% Cream to reduce severe pain
041645 -            suffering from radiation and
041646 -            hyperthermia treatment side
041647 -            effects........................... 090330, ref SDS A4 9A66
041649 -             ..
041650 -       98.  Writing things down reduces mistakes
041651 -            at UCSF so people do not forget complex
041652 -            details; prevents things from falling
041653 -            through the cracks, because people
041654 -            can find the "needle in a haystack"
041655 -            essential for effective
041656 -            comprehensive care................ 090330, ref SDS A4 9B65
041658 -             ..
041659 -       99.  Vitamin E plus pentoxifylline (Trental)
041660 -            prescribed by UCSF when severe side effects
041661 -            from radiation and hyperthermia continue
041662 -            2 - 3 months after completing
041663 -            treatments........................ 090330, ref SDS A4 T487
041665 -             ..
041666 -      100.  Vitamin E plus pentoxifylline (Trental)
041667 -            to recover from radiation and hyperthermia
041668 -            side effects, this will be a
041669 -            minimum 6 month
041670 -            treatment......................... 090330, ref SDS A4 T54H
041671 -
041672 -
041673 -
041674 -
041675 -
041676 -
0417 -

SUBJECTS
Default Null Subject Account for Blank Record

0503 -
050401 -  ..
050402 - Pain Relief Radiation Side Effects
050403 -
050404 - Follow up ref SDS A4 E54L, ref SDS A3 E54L.
050405 -
050406 - Millie sent a letter to the medical team late this evening confirming
050407 - understandings from the meeting today at 1200 with UCSF prescribing
050408 - solution to rising pain and suffering from side effects of radiation
050409 - and hyperthermia treatments that ended on 090317.
050411 -  ..
050412 - Millie's letter says...
050413 -
050414 -    1.  Subject: Meeting UCSF Pain Radiation Side Effects Recovery on Track
050415 -        Date: Mon, 30 Mar 2009 23:58:17 -0800
050424 -         ..
050425 -    2.  Thanks for meeting today to consider remedies for rising pain.
050426 -        ref SDS A4 9A66
050428 -         ..
050429 -    3.  First, the meeting today was an exigent and interim examination
050430 -        in advance of review scheduled in your office on 090423 to
050431 -        evaluate response to radiation and hyperthermia treatment that
050432 -        was completed on 090317. [shown by Doctor Hsu's letter on
050433 -        090328 setting agenda for the meeting. ref SDS 96 H26X]
050434 -
050435 -           [On 090331 2047 Millie reports new lightly sprinkled
050436 -           inflammation rash on lower left arm, concerned may be IBC
050437 -           recurrence, 7th relapse. ref SDS A5 Q69V
050439 -            ..
050440 -           [On 090401 0032 Doctor Hsu advises new red rash on lower
050441 -           left arm likely IBC recurrence. ref SDS A6 R24X
050443 -         ..
050444 -    4.  This evening I received a call from UCSF saying I am meeting
050445 -        with Doctor Rugo in the Breast Care Clinic on 090402 0830 (this
050446 -        Thursday).  I am not aware of this meeting.  By copy to Doctor
050447 -        Rugo and to Tara request confirmation.  As stated in the letter
050448 -        to the medical team on 090326, Doctor Johnson has scheduled
050449 -        labs and a CT test on 090413, ref SDS 89 DW5Y, to support
050450 -        meeting with Doctor Rugo on 090423 in the Breast Care Clinic,
050451 -        and with you in the afternoon to evaluate response to
050452 -        treatment.
050454 -         ..
050455 -    5.  Accordingly, for Doctor Rugo, do I come in this Thursday at
050456 -        0830 to see you or will meeting on 090423 be sufficient?  Has
050457 -        the meeting with you on 090423 0800 been scheduled?
050458 -
050459 -            [On 090401 0046 Millie received a letter from Doctor Hsu
050460 -            responding to medical issues on radiation and hyperthermia;
050461 -            but advises UCSF has not clarified schedule on meeting with
050462 -            Doctor Rugo on 090402. ref SDS A7 RE8S
050464 -             ..
050465 -            [On 090401 0121 Doctor Rugo proposes meeting on 090414
050466 -            rather than on 090402; meeting on 090414 conflicts with
050467 -            planning today to meet on 090423. ref SDS A8 K56O
050469 -             ..
050470 -            [On 090401 0143 Millie's letter proposes meeting wtih
050471 -            Doctor Rugo at UCSF on 090423 0830. ref SDS A9 R96P
050473 -         ..
050474 -    6.  With respect to meeting with Doctor Hsu today...
050476 -         ..
050477 -    7.  To relieve pain you prescribed increasing use of Silvadene
050478 -        Cream 1% with greater thickness and multiple times per day.
050479 -        ref SDS A4 9B3G  You also suggested using ordinary gause for
050480 -        dressing.  Thanks to Doctor Tsuji for providing an ample
050481 -        supply, since I ran out of materials Miranda provided on
050482 -        090317. ref SDS A4 9B41
050484 -         ..
050485 -    8.  On the way home, I filled the prescription you wrote during the
050486 -        meeting.  Went to the Kaiser Park Shadelands Sequoia Pharmacy,
050487 -        and met with Michael W. Sharp, Pharmacist in Charge.  Mr.
050488 -        Sharp substituted...
050489 -
050490 -            SSD
050491 -            1% Silver Sulfadiazine Cream 50 Grams
050492 -            NDC 49884 600 36
050494 -             ..
050495 -            Received 2 each of these.
050497 -         ..
050498 -    9.  Thanks for responding today to the letter on 090218 asking
050499 -        about treating radiation side effects with Vitamin E plus
050500 -        pentoxifylline (Trental). ref SDS A4 T487  I was pleased to
050501 -        hear that I may not need this treatment.  The decision will be
050502 -        made later several months into the recovery cycle.  You further
050503 -        indicated that, if Vitamin E plus pentoxifylline (Trental) is
050504 -        required, treatment will be a minimum of 6 months. ref SDS A4
050505 -        T54H
050507 -         ..
050508 -   10.  You seemed to indicate that observation today shows my recovery
050509 -        is on track to the extent IBC inflammation can be distinguished
050510 -        from radiation side effects.  There are a number of open
050511 -        blisters in the breastbone area, but no evidence at this time
050512 -        of IBC nodularity cited in Doctor Rugo's letter to Kaiser on
050513 -        090129. [cited in Millie's letter to the medical team on
050514 -        090130. ref SDS 51 TZ6H
050516 -         ..
050517 -   11.  The drop in CA 15-3 303 from Kaiser's test on 090116, to CA
050518 -        15-3 251 on the recent test at Kaiser 090317 [reported for the
050519 -        lab on 090309, ref SDS 73 PQTQ, and analyzed on 090323,
050520 -        ref SDS 86 Y077, listing patient history on cancer marker.
050521 -        ref SDS 86 J13O], will be more meaningful with the next test on
050522 -        090413 to support review at UCSF on 090423.  As we discussed,
050523 -        Kaiser will also do a CT test on 090413. ref SDS A4 VK5K
050525 -         ..
050526 -   12.  You indicated today that enhanced MRI testing is not effective
050527 -        at this time because the technology cannot distinguish
050528 -        radiation side effects from IBC.  You further noted that visual
050529 -        observation can evaluate response to treatment of IBC.
050530 -        ref SDS A4 LO5N  When the rash subsides, there is an obvious
050531 -        sign of recovery.  On 090213 Doctor Johnson explained any
050532 -        remaining cancer cells are now very aggressive, so there is
050533 -        less time to configure each succeeding treatments. ref SDS 65
050534 -        GD3I
050536 -         ..
050537 -   13.  Timely, proactive care to maintain local control helps overcome
050538 -        delays because each new treatment takes longer to set up due to
050539 -        my complex patient history, cited during the meeting at Kaiser
050540 -        on 090213. ref SDS 65 IG5O
050541 -
050542 -           [On 090331 2047 Millie reports new lightly sprinkled
050543 -           inflammation rash on lower left arm, concerned may be IBC
050544 -           recurrence, 7th relapse. ref SDS A5 Q69V
050546 -            ..
050547 -           [On 090401 0032 Doctor Hsu advises new red rash on lower
050548 -           left arm likely IBC recurrence. ref SDS A6 R24X
050550 -         ..
050551 -   14.  You asked today if I have cancer internally besides IBC visible
050552 -        on my chest and abdomen, etc, and you asked if I am on any
050553 -        chemotherapy treatment at the present time? ref SDS A4 XL8O
050555 -         ..
050556 -   15.  Doctor Rugo and Doctor Johnson at Kaiser have the complete
050557 -        record on my condition.  As we discussed today, generally, the
050558 -        only evidence of cancer beyond IBC visible in my skin is from
050559 -        CT tests the past 8 years.  During the meeting at UCSF on
050560 -        090205, you palpated a node in the left supraclavicular.  CT
050561 -        tests show 3 nodes less than 1 cm in the right axillary.  Your
050562 -        radiation plan received on 090226 seems to prescribe 8
050563 -        treatments for the node in the left supraclavicular, and no
050564 -        treatment for nodes in the right axillary. ref SDS 71 D452
050566 -         ..
050567 -   16.  Since nodes in the right axillary have been stable for about a
050568 -        year, they may not be cancer.  As well, cancer may have
050569 -        increased internally while off treatment from 090122 until
050570 -        090219.
050572 -         ..
050573 -   17.  The next CT test on 090413 will update the record. [reported to
050574 -        the medical team on 090326. ref SDS 89 DW5Y]
050576 -         ..
050577 -   18.  Thanks again for timely response today strengthening pain
050578 -        relief from radiation side effects. ref SDS A4 9B3G
050580 -         ..
050581 -   19.  Hopefully, I'll get through this.  Your willingness to take
050582 -        exigent action with updated guidance today is a big help.
050583 -
050585 -  ..
050586 - Commend Glenna Support Patient Assistant Role
050587 - Patient Assistant Role Supported by UCSF
050588 -
050589 -
050590 -   20.  Finally, I saw Glenna briefly in the Radiation Oncology lobby.
050591 -        She was coordinating care for another patient, so I said hello.
050592 -        The young woman assisting Glenna's patient, later visited with
050593 -        me briefly to ask about my experience with clinical trials.
050594 -        She was concerned about the long list of side effects, and
050595 -        tried to shuffle through a big stack of papers. ref SDS A4 E54L
050597 -         ..
050598 -   21.  I could not comment on her situation, but related my experience
050599 -        being helped for 2 years with minimal side effects on the
050600 -        cetuximab Carboplatin study.
050602 -         ..
050603 -   22.  I was pleased to commend Glenna's outstanding work coordinating
050604 -        my care for Doctor Rugo during the sunitinib clinical trial.
050605 -
050606 -           [On 090402 0849 Millie asks Glenna for assistance finding
050607 -           the "authorization person" cited in Doctor Rugo's letter for
050608 -           coordinating Millie's treatment of Millie's 7th relapse of
050609 -           IBC on referral from Kaiser. ref SDS B0 9V5Y
050611 -         ..
050612 -   23.  I am further pleased to see UCSF supporting the patient
050613 -        assistance role called out in Kaiser's Healthwise Handbook.
050614 -        Doctor Johnson cited this new role in my case during the
050615 -        meeting at Kaiser on 090213.
050616 -
050623 -
050624 -
050625 -
050626 -
050627 -
050628 -
050629 -
050630 -
050631 -
050632 -
0507 -