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 12:00 PM Monday;
Rod Welch
Millie meeting UCSF to reduce pain from radiation side effects and
evaluate recovery from IBC with radiation and hyperthermia.
1...Summary/Objective
2...Examination Indicates Strong Recovery from 6th Relapse of IBC
3...Pain Relief Radiation Side Effects
4...Distant Metastatis No Evidence IBC Sole Problem to Solve
5...Cancer Mostly Evident from IBC in the Skin No Internal Metastasis
6...Chemotherapy Ended 090122 No Systemic Treatment for Internal Cancer
7...Forgetting Complex Details Needle Lost Haystack Slipped Through Cracks
8...Writing Record Patient History Enables Effective Comprehensive Care
9...Vitamin E Plus Pentoxifylline May Be Needed Extend Care 6 Months
10...Enhanced MRI Metrics for Response to Treatent Recovering from IBC
11...UCSF Practice Using MRI Difficult Distinguish IBC from Radiation Burn
12...Pre-medicated Gauze Not Prescribed at UCSF for Radiation Side Effects
..............
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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 -
040508 - ..
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 the day before on
040911 - 090122; advises review of patient history
040912 - requested in ER release instructions
040913 - shows Millie does not need
040914 - treatment for high
040915 - blood pressure.................... 090123, ref SDS 48 ZI5I
040917 - ..
040918 - 3. Doctor Johnson indicated during call
040919 - that Millie's patient history of CT
040920 - tests over the past 7 years shows no
040921 - evidence of distant metastasis, except
040922 - in the axilla and supraclavicular
040923 - regions, which are symptoms of IBC;
040924 - at this time, shows IBC is
040925 - only problem to
040926 - solve............................. 090123, ref SDS 48 8K6K
040928 - ..
040929 - 4. Primary care physician cites Millie's
040930 - blood test on 090116 shows cancer marker
040931 - CA 15-3 303 rising to historic highs
040932 - signals severe relapse of IBC for
040933 - 6th time; Millie needs immediate
040934 - treatment at UCSF for her
040935 - cancer as chronic
040936 - disease........................... 090123, ref SDS 48 RK6O
040938 - ..
040939 - 5. Sudden reversal with severe relapse
040940 - of IBC requires immediate change
040941 - of treatment reported
040942 - from examination at
040943 - UCSF.............................. 090130, ref SDS 51 4S8O
040945 - ..
040946 - 6. Doctor Rugo prescribes immediate
040947 - treatment at UCSF in radiation
040948 - oncology department for
040949 - 7th relapse....................... 090130, ref SDS 51 TZ6H
040951 - ..
040952 - 7. Urgent treatment was delayed a week
040953 - due to communication problems
040954 - at UCSF........................... 090130, ref SDS 51 AY8Q
040956 - ..
040957 - 8. Approval for Kaiser referral to UCSF
040958 - was delayed by documentation
040959 - errors............................ 090202, ref SDS 53 SP6H
040961 - ..
040962 - 9. Kaiser expedites referral authorization
040963 - in order for UCSF to provide urgent
040964 - treatment quickly enough for
040965 - Millie to recover................. 090202, ref SDS 52 LC7H
040967 - ..
040968 - 10. UCSF proposes 3-week delay to begin
040969 - planning Millie's treatment for
040970 - recovering from 6th relapse of
040971 - of IBC............................ 090202, ref SDS 53 SP7M
040973 - ..
040974 - 11. Doctor Rugo notifies medical team
040975 - Millie needs urgent treatment quickly
040976 - in time to be effective recovering
040977 - from 6th relapse of
040978 - IBC............................... 090202, ref SDS 54 Y15J
040980 - ..
040981 - 12. Millie's letter to UCSF implements Doctor
040982 - Johnson's requests for UCSF strategy
040983 - to treat Millie's cancer as a
040984 - chronic disease................... 090203, ref SDS 56 278T
040986 - ..
040987 - 13. Doctor Rugo's letter explains planning
040988 - to evaluate response to hyperthermia
040989 - treatment and arrange continuing
040990 - care based on another
040991 - CT scan........................... 090204, ref SDS 58 278T
040993 - ..
040994 - 14. UCSF advances Millie's care in Radiation
040995 - Oncology Department 3 weeks; scope of
040996 - radiation and hyperthermia evaluated
040997 - by Dcotor Hsu and Doctor
040998 - Chang............................. 090205. ref SDS 60 0001
041000 - ..
041001 - 15. CT and xray tests taken, and layout
041002 - of treatment fields performed to
041003 - build molds for Millie's
041004 - radiation......................... 090209. ref SDS 64 9R61
041006 - ..
041007 - 16. Examination primary care physician
041008 - at Kaiser finds severe progression
041009 - of IBC in 6th
041010 - relapse........................... 090213, ref SDS 66 4W5I
041012 - ..
041013 - 17. Millie lucky to survive stage IV cancer
041014 - for 8 years because cancer mutates to
041015 - defeat treatments; and medical maladies
041016 - increase which makes recovery
041017 - more difficult to
041018 - achieve........................... 090213, ref SDS 66 NY7L
041020 - ..
041021 - 18. Complexity of case management grows
041022 - during long term survival prevents
041023 - keeping a well ordered record
041024 - essential for effective
041025 - care.............................. 090213, ref SDS 66 9L8O
041027 - ..
041028 - 19. Emotional trauma occurs from surprise
041029 - by medical professionals that Kaiser
041030 - and UCSF have enabled long term surivial
041031 - for a disease that normally is
041032 - difficult to control.............. 090213, ref SDS 66 ML4I
041034 - ..
041035 - 20. Communication leverages synergy
041036 - for Millie's care at Kaiser and UCSF
041037 - which helps prevent problems from
041038 - "falling through the cracks; fewer
041039 - mistakes, and timely response
041040 - helps the medical team
041041 - increase longevity,
041042 - also seems very
041043 - annoying.......................... 090213, ref SDS 66 FZ4H
041045 - ..
041046 - 21. Doctor urges proactive management to
041047 - plan Millie's next treatment because
041048 - there will be less time to recover
041049 - before cancer gets out of control
041050 - for Millie's next
041051 - relapse........................... 090213, ref SDS 66 UP6L
041053 - ..
041054 - 22. Millie's efforts the past 8 years to
041055 - combine medical treatment with vigorous
041056 - exercise was supported by research
041057 - showing exercise can be a strong
041058 - component of cancer
041059 - care.............................. 090213, ref SDS 66 GC40
041061 - ..
041062 - 23. Indian fable illustrates long-term survival
041063 - getting continuous treatment for cancer
041064 - becomes increasingly difficult to perform
041065 - complex clinical, logistical, and financial
041066 - case management; study of Millie's patient
041067 - history shows level of effort to maintain
041068 - well ordered record for effective
041069 - management increases exponentially
041070 - into a crushing burden
041071 - for patients and
041072 - providers......................... 090213, ref SDS 66 IG5O
041074 - ..
041075 - 24. Graph prepared by primary care physician
041076 - shows Millie's good fortune surviving a
041077 - very aggressive cancer with relatively
041078 - high quality of life into an 8th year
041079 - of continuous treatment that normally
041080 - causes early demise due to emotional
041081 - trauma and clincial failures from
041082 - complex case management........... 090213, ref SDS 66 4W72
041084 - ..
041085 - 25. Millie felt life was slipping away in
041086 - October when the 5th relapse was diagnosed
041087 - leading Millie to ask what was going to
041088 - happen to her; Doctor Rugo provided
041089 - encouragement saying "We're not
041090 - going to let anything happen
041091 - to you"........................... 090213, ref SDS 66 F148
041093 - ..
041094 - 26. Collaboration between Kaiser and UCSF
041095 - combines experience with research;
041096 - communication optimizes Millie's care
041097 - beating the odds for long-term survival
041098 - by integrating Kaiser's team care
041099 - practice with UCSF model
041100 - of comprehensive
041101 - care.............................. 090213, ref SDS 66 685I
041103 - ..
041104 - 27. Multiple relapse of cancer causes cells
041105 - to mutate into disease that resists
041106 - treatment; Millie surviving 6 relapses
041107 - needs highly specialized care and
041108 - so should ask Doctor Rugo to begin
041109 - planning for the next relapse
041110 - to treat Millie's cancer as
041111 - a chronic disease................. 090213, ref SDS 66 R75G
041113 - ..
041114 - 28. Doctor Rugo has responded by scheduling
041115 - a meeting with Millie at UCSF on
041116 - 090312............................ 090213, ref SDS 66 6P7G
041118 - ..
041119 - 29. Doctor Johnson underscored importance
041120 - timely care for Millie by offering
041121 - religious perspective on transition
041122 - from a vigorous life that may end
041123 - for Millie in less than a
041124 - year.............................. 090213, ref SDS 66 646L
041126 - ..
041127 - 30. Hospice care helps patients and families
041128 - cope with final days of life without
041129 - suffering significant physical
041130 - and emotional pain................ 090213, ref SDS 66 VW63
041132 - ..
041133 - 31. Life ending scenarios have been presented
041134 - to Millie many times the past 5 years;
041135 - case study reflects Millie's physical
041136 - resiliance and strength of character
041137 - that enables exceptional longevity
041138 - for her aggressive
041139 - cancer............................ 090213, ref SDS 66 L19H,
041141 - ..
041142 - 32. Collaboration on case management for
041143 - long-term survivors of cancer becomes
041144 - frustrating because everybody loses
041145 - control of increasingly
041146 - complex medical
041147 - records........................... 090213, ref SDS 66 JL9L
041149 - ..
041150 - 33. Lab and CT test reports illustrate
041151 - frustration, because providers do not
041152 - have enough time to enter results
041153 - from other doctorsrs in the medical
041154 - chart, because doctors prefer to
041155 - rely on local diagnostics
041156 - rather than referral
041157 - data.............................. 090213, ref SDS 66 NY4H
041159 - ..
041160 - 34. Cancer marker CA 15-3 wide disparities
041161 - between Kaiser and UCSF illustrates
041162 - why doctor's rely on local data
041163 - rather than referral
041164 - diagnostics....................... 090213, ref SDS 66 A46O
041166 - ..
041167 - 35. Case management takes a lot of will
041168 - power for due diligence to
041169 - maintain a well ordered
041170 - record............................ 090213, ref SDS 66 J27J
041172 - ..
041173 - 36. Meeting at Kaiser changed to 4 week
041174 - interval, rather than 8, as done the
041175 - past 2 years, provides effective support
041176 - for UCSF to start next treatment in
041177 - time to avoid losing control of
041178 - Millie's cancer................... 090213, ref SDS 66 QX5O
041180 - ..
041181 - 37. Millie requests explanation of treatment
041182 - plan. Doctor Rugo's letter to Kaiser on
041183 - 090129 discussed hyperthermia with Doxil,
041184 - reported on 090130. Has the plan changed
041185 - to use "lower dose" radiation rather
041186 - than Doxil. Will both be
041187 - used, or some other
041188 - agent............................. 090218, ref SDS 67 TH5W
041190 - ..
041191 - 38. Millie reports to medical team meeting
041192 - with Doctor Johnson at Kaiser on 090213
041193 - was optimistic Millie might have 3 - 6
041194 - months of recovery, but will need
041195 - treatment from Doctor Rugo for
041196 - cancer as a "chronic
041197 - disease".......................... 090218, ref SDS 67 TH6U
041199 - ..
041200 - 39. Millie requests reponse from UCSF to the
041201 - letter on 090209 requesting explanation
041202 - of treatments for side effects from
041203 - radiation and hyperthermia described by
041204 - Doctor Hsu during the meeting on
041205 - 090205. Does the treatment
041206 - plan address side effects
041207 - prospectively..................... 090218, ref SDS 67 TH7V
041209 - ..
041210 - 40. Radiation and hyperthermia begins
041211 - at UCSF for Millie to recover from
041212 - 6th relapse of
041213 - IBC............................... 090219, ref SDS 68 E57G
041215 - ..
041216 - 41. Millie's letter to UCSF requests
041217 - explanation of radiation and hyperthermia
041218 - treatments for recovering from
041219 - IBC............................... 090220, ref SDS 69 EA4Q
041221 - ..
041222 - 42. Hyperthermia treatment planning
041223 - on 090209 report received
041224 - from UCSF......................... 090220, ref SDS 70 PR4Y
041226 - ..
041227 - 43. Hyperthermia science, theraputic
041228 - rationale and applications with
041229 - other modalities presented in
041230 - BSD professional paper received
041231 - from UCSF......................... 090220, ref SDS 70 GK6F
041233 - ..
041234 - 44. Millie's letter to UCSF requests work
041235 - plan for radiation treatments to
041236 - recover from 6th relapse of
041237 - IBC............................... 090223, ref SDS 71 3N9J
041238 - and asks for scientific paper
041239 - using radiation to treat
041240 - IBC............................... 090223, ref SDS 71 T49U
041242 - ..
041243 - 45. Radiation combined with hyperthermia
041244 - treatment plan received from
041245 - UCSF.............................. 090226, ref SDS 72 D452
041247 - ..
041248 - 46. Blood test at Kaiser for meeting
041249 - at UCSF on 090312 to evaluate
041250 - effectiveness of radiation
041251 - and hyperthermia after
041252 - 3 weeks........................... 090309, ref SDS 74 6Z4F
041254 - ..
041255 - 47. Agenda submitted to medical team to
041256 - be prepared for productive meetings
041257 - at UCSF scheduled on 090312 to evaluate
041258 - response to treatment after getting
041259 - 3 weeks of radiation and hyperthermia
041260 - to recover from 6th relapse
041261 - of IBC............................ 090310, ref SDS 75 PR4Y
041263 - ..
041264 - 48. Called Kaiser to get results of blood
041265 - test on 090309 for submission to medical
041266 - team for being prepared to meet at
041267 - UCSF on 090312; Florida says results
041268 - pending from lab; says to call back
041269 - on 090311 to get the report
041270 - for distribution.................. 090310, ref SDS 76 JH4H
041272 - ..
041273 - 49. UCSF letter from Tara proposed canceling
041274 - meeting scheduled by Doctor Rugo for
041275 - 090312 to evaluate response to
041276 - treatment, and also Millie's
041277 - concern about growing
041278 - side effects...................... 090310, ref SDS 77 PR4Y
041280 - ..
041281 - 50. Millie letter to primary care physician
041282 - at Kaiser coordinates getting report
041283 - for blood test on 090309 for
041284 - meeting at UCSF on
041285 - 090312............................ 090311, ref SDS 78 S84F
041287 - ..
041288 - 51. Blood test report for Millie's lab on
041289 - 090209 was not submitted by Kaiser to
041290 - UCSF due to telephone and fax machine
041291 - problems; UCSF relied on backup
041292 - copy hand delivered by
041293 - Millie............................ 090312, ref SDS 81 XE3K
041295 - ..
041296 - 52. Examination at UCSF Breast Care Clinic
041297 - finds signs of recovery from 6th relapse
041298 - of IBC; Millie responding well after
041299 - 3 weeks of treatment with radiation
041300 - and hyperthermia; severe side
041301 - effects observed.................. 090312, ref SDS 81 YX9F
041303 - ..
041304 - 53. Cancer marker CA 15-3 missing from
041305 - blood test for Millie's lab at Kaiser
041306 - on 090309; missing diagnostic
041307 - complicates evaluating
041308 - response to treatment............. 090312, ref SDS 81 YX5F
041310 - ..
041311 - 54. Doctor Rugo planning to implement
041312 - request by Doctor Johnson at Kaiser
041313 - for UCSF to treat Millie's cancer
041314 - as a chronic disease.............. 090312, ref SDS 81 QQ9L
041316 - ..
041317 - 55. Examination at UCSF Radiation Oncology
041318 - department concurs Millie recovering
041319 - from 6th relapse of IBC by responding
041320 - to radiation and
041321 - hyperthermia...................... 090312, ref SDS 81 F88K
041322 - discloses side effects severely
041323 - blistering skin will worsen for a
041324 - month, and then gradually
041325 - recover........................... 090312, ref SDS 81 F860
041326 - that radiation and hyperthermia
041327 - will continue to destroy cancer cells
041328 - for weeks and even months after ending
041329 - treatments on
041330 - 090317............................ 090312, ref SDS 81 VL4O
041332 - ..
041333 - 56. After meeting with UCSF at 0800, called
041334 - Kaiser at 1437; was on "hold" for 90
041335 - minutes; Cisi in the Chemotherapy
041336 - Clinic came online and advised that
041337 - CA 15-3 was not listed in Kaiser's
041338 - for Millie's lab on
041339 - 090309............................ 090312, ref SDS 82 JO8O
041341 - ..
041342 - 57. Millie's letter to medical team reports
041343 - productive meetings at UCSF on 090312
041344 - with favorable findings that Millie
041345 - is recovering from 6th
041346 - relapse of
041347 - IBC............................... 090313, ref SDS 83 Q49L
041349 - ..
041350 - 58. Millie's final treatment at UCSF with
041351 - radiation and hyperthermia to
041352 - recover from 6th relapse
041353 - IBC............................... 090317, ref SDS 85 9L7K
041355 - ..
041356 - 59. Millie received at UCSF orientation and
041357 - medications for home care to treat severe
041358 - side effects from radiation treatments
041359 - that will get worse for a few weeks
041360 - before starting to get
041361 - better............................ 090317, ref SDS 85 M442
041363 - ..
041364 - 60. Arlette checked the computer and
041365 - concluded a mistake occurred at the
041366 - lab not testing for the cancer marker
041367 - on the blood test for 090309. Arlette
041368 - entered a supplemental order for
041369 - Millie to get another blood
041370 - draw at no charge
041371 - later today....................... 090317, ref SDS 86 Y04R
041373 - ..
041374 - 61. Kaiser reported CA 15-3 251 for blood
041375 - test on 090317 that corrected problems
041376 - with lab on 090309 which omitted cancer
041377 - marker needed for the meeting at UCSF
041378 - on 090312 to evaluate response to
041379 - treatment; results today indicate
041380 - strong recovery from 6th relapse
041381 - of IBC............................ 090323, ref SDS 87 Y077
041383 - ..
041384 - 62. Millie's letter notifies medical team
041385 - radiation and hyperthermia treatments
041386 - were completed on 090317; submits agenda
041387 - for meeting today evaluating response
041388 - to treatment with, and recovery from
041389 - side effects from radiation
041390 - and hyperthermia on
041391 - referral to
041392 - UCSF.............................. 090324, ref SDS 88 PR4Y
041394 - ..
041395 - 63. Meeting at Kaiser reveiw response to
041396 - treatment at UCSF for 6th relapse of
041397 - cancer, planning arrangements
041398 - for treating next
041399 - relapse........................... 090325, ref SDS 89 E54L
041401 - ..
041402 - 64. Shoulder injury recovering on schedule
041403 - following treatment in ER on 090122,
041404 - physical therapy; increased energy
041405 - after ending chemotherapy enables
041406 - faster recovery with
041407 - exercise.......................... 090325, ref SDS 89 YU6K
041409 - ..
041410 - 65. Examination finds strong response to
041411 - treatment with radiation and hyperthermia
041412 - at UCSF ended on 090317 aligns with
041413 - significant decline in cancer
041414 - marker reversing continuous
041415 - rising tread for the
041416 - past year......................... 090325, ref SDS 89 D452
041418 - ..
041419 - 66. Disease trajectory graph shows Millie
041420 - may be nearing a point of rapid
041421 - decline with next relapse
041422 - of cancer......................... 090325, ref SDS 89 P39M
041424 - ..
041425 - 67. Hospice care can be investigate in order
041426 - to be prepared for smooth transition
041427 - as patient enters decline phase
041428 - of cancer trajectory.............. 090325, ref SDS 89 JS5I
041430 - ..
041431 - 68. Streamlined referral procedures
041432 - delivering care required in order
041433 - for the medical team to be
041434 - prepared treating cancer
041435 - as a chronic
041436 - disease........................... 090325, ref SDS 89 P43G
041438 - ..
041439 - 69. Stress increases beyond capacity to cope
041440 - managing chronic disease with procedures
041441 - designed for routine cancer care;
041442 - doctor approves Millie for
041443 - vacation to get needed
041444 - rest.............................. 090325, ref SDS 89 M35H
041446 - ..
041447 - 70. Lab mistakes and delays hamper delivering
041448 - referral care in time to be effective
041449 - treating stage IV cancer; patient facing
041450 - 7th relapse at risk; providers under
041451 - stress angry that someone is
041452 - changing doctor's orders
041453 - for patient care.................. 090325, ref SDS 89 RB3G
041455 - ..
041456 - 71. Lab mistakes and delays chronic problems
041457 - prevent treating cancer as chronic
041458 - disease on referral to UCSF
041459 - case study........................ 090325, ref SDS 89 KZ6N
041461 - ..
041462 - 72. Cancer chronic disease timely treatment
041463 - essential for Millie's 7th relapse
041464 - stage IV IBC; Kaiser has no chemotherapy
041465 - agents for Millie's narrow patient profile
041466 - triple negative; prescribes care
041467 - on referral to UCSF;
041468 - case study........................ 090325, ref SDS 89 L15M
041470 - ..
041471 - 73. Pain relief needed; Millie suffering
041472 - physically and emotionally from severe
041473 - radiation side effects; pain and
041474 - suffering will get worse for several
041475 - more weeks until Millie begins to recover
041476 - from radiation burn; Doctor Johnson
041477 - prescribes zink and Domeboro supplement
041478 - treatment prescribed at UCSF for
041479 - severe radiation side
041480 - effects........................... 090325, ref SDS 89 P39I
041482 - ..
041483 - 74. Medical tests ordered at Kaiser for
041484 - examinations at UCSF on planning
041485 - Millie's treatment for the
041486 - next relapse of
041487 - IBC............................... 090325, ref SDS 89 P36O
041489 - ..
041490 - 75. Medical tests ordered 10 days prior to
041491 - meetings at UCSF allows enough time
041492 - for correcting mistakes and expediting
041493 - delays so that data is delivered
041494 - when needed....................... 090325, ref SDS 89 LX5I
041496 - ..
041497 - 76. Patient asked to coordinate on correcting
041498 - mistakes in CT Department by consolidating
041499 - findings in a single report, rather than
041500 - publising multiple reports for
041501 - each test......................... 090325, ref SDS 89 P53O
041503 - ..
041504 - 77. Letter to Kaiser confirms understandings
041505 - from meeting on 090325 that reported a
041506 - favorable response after completeing
041507 - treatment at UCSF on 090317 with
041508 - radiation and hyperthermia
041509 - protocol.......................... 090326, ref SDS 90 5V7O
041511 - ..
041512 - 78. Kaiser plans visual examination with
041513 - CT tests to evaluate response to treatment
041514 - at UCSF with hyperthermia and
041515 - radiation......................... 090326, ref SDS 91 1V4N
041517 - ..
041518 - 79. Millie submits patient history showing
041519 - Kaiser has had problems relying on visual
041520 - examination and CT tests to assess IBC;
041521 - she submits research showing enhanced
041522 - MRI is reported to be effective
041523 - supplementing visual and
041524 - CT test modalities................ 090326, ref SDS 92 5V7O
041526 - ..
041527 - 80. Millie's letter asks about progress
041528 - reviewing research to solve problem
041529 - of diminishing treatments for
041530 - Millie's expanding patient
041531 - profile........................... 090326, ref SDS 92 QM3V
041533 - ..
041534 - 81. Millie's letter notifies medical team
041535 - meetings scheduled at UCSF on 090423
041536 - will evaluate response to radiation and
041537 - hyperthermia treatments that ended
041538 - on 090317, and develop plan
041539 - to treat Millie's cancer
041540 - as a chronic
041541 - disease........................... 090326, ref SDS 90 DW4R
041543 - ..
041544 - 82. Millie's letter notifies medical team
041545 - Doctor Johnson scheduled lab and CT
041546 - tests 10 days early on 090413 in order
041547 - to have enough time to submit reports
041548 - to UCSF for preparing to have a
041549 - productive meeting on 090423
041550 - that will plan next
041551 - treatments........................ 090326, ref SDS 90 DW5Y
041553 - ..
041554 - 83. Millie's letter thanks Doctor Stritter
041555 - for continued interest in her case, and
041556 - advises that Stritter 2nd opinion research
041557 - to solve problems of diminishing treatments
041558 - for Millie's expading patient profile
041559 - were submitted to the medical
041560 - team.............................. 090326, ref SDS 93 1V4N
041562 - ..
041563 - 84. Millie's letter reports to Doctor
041564 - Stritter suffering caused by radiation
041565 - side effects; does not feel well
041566 - after 4 weeks of intense
041567 - treatments........................ 090326, ref SDS 93 PX6Y
041569 - ..
041570 - 85. Doctor Johnson responds to Millie's
041571 - submission of research showing enhanced
041572 - MRI technology can effectively supplement
041573 - visual and CT modalities to assess
041574 - response to treatment of IBC 6th
041575 - relapse, saying he will talk about
041576 - it at the next visit in 6
041577 - weeks............................. 090326, ref SDS 94 T64N
041579 - ..
041580 - 86. Doctor Johnson responds to Millie's
041581 - request for progress reviewing research
041582 - to solve problems of diminishing treatments
041583 - for expanding patient profile, saying
041584 - he will talk about it at the
041585 - next visit in 6
041586 - weeks............................. 090326, ref SDS 94 T64N
041588 - ..
041589 - 87. Millie letter from Doctor Stritter asks
041590 - to be notified about progress considering
041591 - 2nd opinion options for solving problem
041592 - of diminishing treatments for
041593 - Millie's 7th relapse
041594 - of IBC............................ 090326, ref SDS 95 Q16O
041596 - ..
041597 - 88. Millie letter to medical team reports
041598 - rising pain from radiation side effects,
041599 - asks about using Domeboro
041600 - to supplement
041601 - silvadene......................... 090328, ref SDS 96 4S9W
041603 - ..
041604 - 89. Millie reports continued recovery from
041605 - IBC after completing radiation and
041606 - hyperthermia 2 weeks
041607 - earlier........................... 090328, ref SDS 96 4S4V
041609 - ..
041610 - 90. Doctor Hsu letter to Millie schedules
041611 - examination to relieve pain and suffering
041612 - side effects from radiation side
041613 - effects following treatment
041614 - to recover from IBC that
041615 - ended on 090317................... 090328, ref SDS 97 H27I
041617 - ..
041618 - 91. Millie's letter to UCSF confirms meeting
041619 - with Doctor Hsu on 090401 to get pain
041620 - relief from radiation side
041621 - effects........................... 090328, ref SDS 98 H27I
041623 - ..
041624 - 92. Doctor Hsu asks Millie to change time
041625 - of meeting on 090401 to afternoon
041626 - to accomodate tumor board
041627 - meeting........................... 090328, ref SDS 99 SA4J
041629 - ..
041630 - 93. Millie letter to UCSF asks Doctor Hsu
041631 - to meet on Monday 090330, rather than
041632 - Wedensday 090401 to expedite
041633 - pain relief....................... 090328, ref SDS A0 CM5K
041635 - ..
041636 - 94. Doctor Hsu agrees to advance examination
041637 - of Millie for prescribing pain relief
041638 - proposes meeting on 090330 in the
041639 - afternoon......................... 090328, ref SDS A1 4Z6I
041641 - ..
041642 - 95. Millie letter to UCSF asks to meet on
041643 - 090330 0800 rather than in the
041644 - afternoon to expedite getting
041645 - pain relief....................... 090328, ref SDS A2 MR3K
041647 - ..
041648 - 96. Doctor Hsu letter schedules meeting
041649 - at UCSF 090330 1200 to expedite pain
041650 - relief for Millie from radiation
041651 - side effects...................... 090328, ref SDS A3 F34O
041653 - ..
041654 - 97. Millie letter confirms meeting at
041655 - UCSF 090330 1200 to expedite pain
041656 - relief from radiation
041657 - side effects...................... 090328, ref SDS 0 W55N
041658 -
041659 -
041660 -
041661 -
041662 -
041663 -
0417 -
SUBJECTS
Default Null Subject Account for Blank Record
0503 -
050401 - ..
050402 - Examination Indicates Strong Recovery from 6th Relapse of IBC
050403 -
050404 - Follow up ref SDS A4 E54L, ref SDS A3 E54L.
050405 -
050406 - Before the meeting today, Millie saw Glenna briefly in the lobby of
050407 - the Radiation Oncology Department. Glenna was coordinating treatment
050408 - with clinical trial for another patient. The patient had an
050409 - assistant, who visited with Millie for about 10 minutes in the lobby
050410 - after Glenna took the patient into the treatment area. The patient
050411 - assistant indicated Glenna had told the patient about Millie's
050412 - experience getting treatment at UCSF on clincial trial. The patient
050413 - assistant asked Millie about her results, and was particularly
050414 - interested in side effects. She had a lot of papers in a brief case,
050415 - from which she tried to find documents that caused concern about side
050416 - effects listed for her patient's clinical trial.
050417 -
050418 - [On 090330 2351 Millie letter to medical team commends UCSF
050419 - support for patient assistant role, and commends Glenna for
050420 - excellent support coordinating Millie's treatment with
050421 - sunitinib clinical trial. ref SDS A6 E55U
050423 - ..
050424 - [On 090402 0849 Millie asks Glenna for assistance finding the
050425 - "authorization person" cited in Doctor Rugo's letter for
050426 - coordinating Millie's treatment of Millie's 7th relapse of IBC
050427 - on referral from Kaiser. ref SDS B1 WM8M
050429 - ..
050430 - The patient assistant was unable to find the list.
050432 - ..
050433 - Millie related good experience for nearly 2 years on the cetuximab
050434 - Carboplatin clinical trial, and was fortunate to have minimal side
050435 - effects. She further explained that side effects from extensive
050436 - radiation have been difficult, but the treatment seems effective. She
050437 - is meeting with Doctor Hsu today for relief of radiation side effects.
050438 - The patient assistant thanked Millie for sharing her experience, and
050439 - then left to catch up with her patient and with Glenna.
050441 - ..
050442 - Millie was then called into the clinic to meet with Doctor Hsu.
050444 - ..
050445 - Doctor Hsu made a quick examination today 2 weeks after Millie
050446 - completed radiation and hyperthermia treatments. He indicated
050447 - Millie's condition presents as expected for strong response to
050448 - treatment, and the amount of severe radiation "burn" side effects
050449 - correlates with the amount of radiation received during treatments
050450 - that started at UCSF on 090219 and completed on 090317, as called out
050451 - in the UCSF treatment plan received in the record on 090226.
050452 - ref SDS 35 D452
050454 - ..
050455 - Severe side effects from radiation burn still prevent full assessment
050456 - of recovery and requirements for additional treatment with radiation,
050457 - hyperthermia, and complementary modalities, including chemotherapy, as
050458 - discussed with Doctor Hsu and Chris during the meeting at UCSF on
050459 - 090312. ref SDS 81 F893 At that time on 090312, the doctor advised
050460 - that full assessment could take several months. ref SDS 81 F89Y
050461 - Doctor Hsu feels today that further treatment, also, discussed on
050462 - 090312, ref SDS 81 576L, cannot be determined until examination on
050463 - 090423, scheduled previously on 090317. ref SDS 85 5Q42
050464 -
050465 - [On 090330 2351 Millie's letter notifies medical team results
050466 - of Doctor Hsu's examination today shows recovery from 6th
050467 - relapse of IBC is on track. ref SDS A6 E54L
050469 - ..
050470 - [On 090330 2351 letter to medical team relates discussion today
050471 - on no evidence of cancer in internal organs, and that Millie is
050472 - not currently getting chemotherapy. ref SDS A6 E53T
050474 - ..
050475 - [On 090331 2047 Millie reports new lightly sprinkled
050476 - inflammation rash on lower left arm, concerned may be IBC
050477 - recurrence, 7th relapse. ref SDS A7 Q69V
050479 - ..
050480 - [On 090401 0032 Doctor Hsu advises new red rash on lower
050481 - left arm likely IBC recurrence. ref SDS A8 R24X
050483 - ..
050484 - Millie advised that during the meeting last week with Kaiser on
050485 - 090325, the primary care physician, Doctor Johnson, scheduled labs and
050486 - CT tests on 090413. ref SDS 89 TE4O This allows 10 days for
050487 - transmitting data in time for meetings at UCSF on 090423, which was
050488 - scheduled by Doctor Hsu on 090317. ref SDS 89 LX5I
050490 - ..
050491 - Doctor Hsu was supported during the meeting today by a colleague
050492 - Doctor Stuart Tsuji, MD PhD.
050493 -
050494 -
050496 - ..
050497 - Pain Relief Radiation Side Effects
050498 -
050499 - Doctor Hsu asked when Millie completed radiation and hyperthermia?
050501 - ..
050502 - Millie advised that patient history shows Millie's last treatment was
050503 - on 090317. ref SDS 46 9L7K
050505 - ..
050506 - Doctor Hsu said today that extreme inflammation and blisters visible
050507 - on Millie's chest, including the large open sore bleeding on the
050508 - breastbone area, which Millie reported a few weeks ago looked like
050509 - progression of IBC in her letter to the medical team on 090310 0351,
050510 - ref SDS 75 O56X, and blistering extending to the left abdomen, and on
050511 - the upper left arm, reflect continuing theraputic benefits from 4
050512 - weeks of intense radiation and hyperthermia, shown by the treatment
050513 - plan received in the record on 090226, ref SDS 72 D452, and which
050514 - ended 2 weeks ago. The doctor expects the radiation blisters and open
050515 - sores should begin to subside next week, since it usually takes
050516 - several weeks of getting worse, before the skin burned by radiation
050517 - begins to heal, as explained by the doctor during the meeting at UCSF
050518 - on 090312 0900.
050519 -
050520 - [On 090401 0032 Doctor Hsu advises new red rash on lower
050521 - left arm likely IBC recurrence. ref SDS A8 R24X
050523 - ..
050524 - [On 090401 0046 Millie thanks Doctor Hsu and notifies
050525 - medical team that in the meeting at UCSF today on 090330
050526 - the doctor diagnosed the large bleeding wound in the
050527 - breastbone area as reaction to radiation and so would heal;
050528 - this assurance increases Millie's resolve to tolerate pain
050529 - and suffering from the open wound in the breastbone area,
050530 - ref SDS A9 RE6Y; Millie asks the medical team to schedule
050531 - treatment of new cancer on her lower left arm, ref SDS A9
050532 - RE8P, diagnosed by Doctor Hsu earlier on 090401 0032.
050533 - ref SDS A8 R24X
050535 - ..
050536 - [On 090401 0121 Doctor Rugo notifies Millie and the medical
050537 - team that treatment of IBC recurrence on the lower left arm
050538 - diagnosed by Doctor Hsu, reported on 090401 0032,
050539 - ref SDS A8 R24X, must be delayed until Millie's wound heals
050540 - in breastbone area diagnosed as reaction to radiation in
050541 - the meeting on 090330 1200, ref SDS 0 MN6F, and so defers
050542 - meeting scheduled on 090402 0800; expects recovery from IBC
050543 - in areas treated with radiation and hyperthermia to be very
050544 - effective. ref SDS B0 K56O
050546 - ..
050547 - [On 090607 2253 Millie notified medical team that wound in
050548 - the breastbone area diagnosed as reaction to readiation
050549 - treatment was worse; requested additional treatment planned
050550 - by UCSF. ref SDS B6 KS62
050552 - ..
050553 - [On 090609 Doctor Hsu advises that the wound in Millie's
050554 - breastbone area is not caused by reaction to radiation
050555 - treatments; the bleeding wound was caused by a mistake
050556 - performing radiation in February and March at UCSF that
050557 - missed treating IBC in the breastbone area and this
050558 - untreated IBC tumor has caused cancer to spread, and causes
050559 - problems in Millie's lungs that prevent breathing.
050560 - ref SDS B7 TP9L
050562 - ..
050563 - He feels that pain will decline as the skin continues to heal,
050564 - hopefully beginning next week.
050566 - ..
050567 - The doctor advised that experience at UCSF shows Silvadene Cream 1%,
050568 - which was prescribed for Millie on 090317 has proven to be the best
050569 - remedy to relieve pain from radiation side effects. He explained the
050570 - cream is mostly intended to prevent infection from open sores caused
050571 - by radiation blisters, but also reduces pain.
050573 - ..
050574 - The doctor said to increase the thickness of the application, and to
050575 - completely cover inflammaed areas. He said Millie should chnage the
050576 - dressing twice a day to reduce pain from radiation side effects.
050577 - Doctor Hsu wrote a prescription for Millie to get more Silvadene 1%
050578 - cream in order to implement instructions to increase the amount of
050579 - daily application. ref SDS 0 9B3G
050580 -
050581 - [On 090330 2351 Kaiser filled the UCSF prescription by
050582 - providing medication "SSD 1% Silver Sulfadiazine Cream"
050583 - with a different name for Silvadene 1% cream to treat
050584 - radiation burn with increased daily application.
050585 - ref SDS A6 6F4Q
050587 - ..
050588 - [On 090401 0032 Doctor Hsu asks if increasing application
050589 - of Silvadene 1% cream improved pain relief? ref SDS A8 1C4L
050591 - ..
050592 - [On 090401 0046 Millie reports to medical team that
050593 - increasing application of Silvadene 1% cream may improve
050594 - pain relief slightly. ref SDS A9 RE6V
050596 - ..
050597 - Millie asked about getting more bandages to dress the large bleeding
050598 - wound in the breastbone area. She has used all of the bandages
050599 - provided by Miranda on 090317. ref SDS 85 ET49 Doctor Tsuji left the
050600 - examination room and returned in 5 minutes with about 10 bandages.
050601 - Millie said that will only last 5 days. Doctor Tsuji appologized and
050602 - said he was lucky to get 10, because they initially only gave him 4
050603 - bandages.
050605 - ..
050606 - Doctor Hsu advised that ordinary gauze works just as well as the
050607 - special bandages to dress Millie's wounds from radiation side effects.
050608 - Doctor Tsuji found a stack of about 20 gause swatches about 4 inches
050609 - square. Doctor Hsu said to simply apply extra thick Silvadene Cream
050610 - 1%, and then gently press the guaze swatches to cover affected areas,
050611 - without allowing the gauze to touch the skin. This will prevent the
050612 - gauze from sticking to the skin.
050613 -
050614 -
050616 - ..
050617 - Distant Metastatis No Evidence IBC Sole Problem to Solve
050618 - Cancer Mostly Evident from IBC in the Skin No Internal Metastasis
050619 - Chemotherapy Ended 090122 No Systemic Treatment for Internal Cancer
050620 -
050621 - Doctor Hsu explained that he forgot to ask during the meeting on
050622 - 090317, which was the last day of treatment, about the extent of
050623 - Millie's cancer. The doctor's report on work performed under the
050624 - referral order from Doctor Rugo at UCSF, and from Doctor Johnson at
050625 - Kaiser will present results of radiation and hypertheria to treat IBC
050626 - in relation to Millie's overall diagnosis of metastatic disease.
050628 - ..
050629 - Today, he asked if Millie has any internal cancer, and whether she is
050630 - being treated with chemotherapy for distant metastasis?
050632 - ..
050633 - This was discussed with Doctor Hsu during the initial consultation in
050634 - the Radiation Oncology Department at UCSF on 090205, when Doctor Hsu
050635 - asked about Millie's patient history. ref SDS 60 5H9J
050637 - ..
050638 - At that time on 090205, Millie explained that the primary care
050639 - physician at Kaiser, Doctor Johnson, called a few weeks earlier on
050640 - 090123 and indicated the only evidence of internal cancer over
050641 - Millie's 8 years of treatment are lymph nodes in the right axilla, and
050642 - left supraclavicular, which are both symptoms of IBC that have
050643 - fluctuated with progression of IBC and recovery during chemotherapy
050644 - treatments, and so Millie's only cancer to solve is IBC. ref SDS 48
050645 - 8K6K At this time there is no evidence of cancer in internal organs.
050647 - ..
050648 - [On 090330 2351 letter to medical team relates discussion today
050649 - on no evidence of cancer in internal organs, and that Millie is
050650 - not currently getting chemotherapy. ref SDS A6 E53T
050652 - ..
050653 - [On 090331 2047 Millie reports new lightly sprinkled
050654 - inflammation rash on lower left arm, concerned may be IBC
050655 - recurrence, 7th relapse. ref SDS A7 Q69V
050657 - ..
050658 - [On 090401 0032 Doctor Hsu advises new red rash on lower
050659 - left arm likely IBC recurrence. ref SDS A8 R24X
050661 - ..
050662 - Doctor Hsu explained having forgotten Millie's patient history on
050663 - lymphadenopathy was reviewed carefully during the meeting on 090205,
050664 - ref SDS 60 O534, and was submitted to UCSF in a letter on 090209
050665 - confirming understandings. ref SDS 63 743X He feels that remembing
050666 - details from Millie's long, complex medical chart is very difficult.
050668 - ..
050669 - Since Millie has not received systemic chemotherapy treatment since
050670 - 090122, there was a big concern on 090205 to start radiation and
050671 - hyperthermia treatment in time to resist spread of cancer internally.
050672 - ref SDS 60 FQ82 Doctor Hsu recalled rearranging his schedule to
050673 - advance Millie's treatment 2 weeks at that time, reported on 090203.
050674 - ref SDS 55 XX5I
050675 -
050676 -
050678 - ..
050679 - Forgetting Complex Details Needle Lost Haystack Slipped Through Cracks
050680 - Writing Record Patient History Enables Effective Comprehensive Care
050681 -
050682 - Millie said there was another question she wanted to ask for the
050683 - meeting today, but she forgot while concnetrating on discussions and
050684 - listening to the doctor's instructions.
050686 - ..
050687 - Doctor Hsu smiled and said writing things down enables clear, concise,
050688 - complete communication. Concentration and focus listening intently
050689 - for accurate understanding, and while talking to explain complicated
050690 - problems, the mind loses track of other important matters. Doctor Hsu
050691 - cited experience at UCSF shows writing things down helps comprehensive
050692 - care by using a check list of issues. This aligns with research on
050693 - 990303 showing limited span of attention prevents people from
050694 - remembering more than 2 or 3 things, and there is an absolute limit 7
050695 - subjects people can remember under ideal conditions. ref SDS 1 5328
050697 - ..
050698 - The doctor gave an example from Millie's letter to the medical team on
050699 - 090218 asking about Vitamin E plus pentoxifylline (Trental) to recover
050700 - from radiation side effects. ref SDS 67 TH7V Doctor Hsu planned to
050701 - discuss this solution during the meeting on 090205, and again 090209,
050702 - but forgot, similar to forgetting Millie needed support from
050703 - orthopedics to manipulate her separated shoulder for xrays on 090209.
050704 - ref SDS 64 E663
050706 - ..
050707 - The doctor cited Millie's letter writing it down on 090218 reminded
050708 - him to explain Vitamin E plus pentoxifylline (Trental) is used at UCSF
050709 - as a secondary solution for radiation side effects, and this was then
050710 - later explained during the meeting on 090312. ref SDS 81 6P8K
050711 -
050712 -
050714 - ..
050715 - Vitamin E Plus Pentoxifylline May Be Needed Extend Care 6 Months
050716 -
050717 - Follow up ref SDS 81 6P8K.
050718 -
050719 - Doctor Hsu advised again today that UCSF prescribes Vitamin E plus
050720 - pentoxifylline (Trental) when side effects from radiation and
050721 - hyperthermia continue 2 - 3 months after completing treatments, as
050722 - planned previously during the meeting on 090312. ref SDS 81 Q16N
050723 - Doctor Hsu indicated that examination today 2 weeks after ending
050724 - treatments on 090317 aligns with examination at Kaiser last week on
050725 - 090325 finding severe radiation burn. ref SDS 89 U86N If Millie does
050726 - not show substantial recovery in another month or so, then Doctor Hsu
050727 - may prescribe Vitamin E plus pentoxifylline (Trental).
050729 - ..
050730 - Doctor Hsu noted that if Millie needs Vitamin E plus pentoxifylline
050731 - (Trental) to recover from radiation and hyperthermia side effects,
050732 - this will be a minimum 6 month treatment.
050733 -
050734 -
050736 - ..
050737 - Enhanced MRI Metrics for Response to Treatent Recovering from IBC
050738 - UCSF Practice Using MRI Difficult Distinguish IBC from Radiation Burn
050739 -
050740 - Doctor Hsu discussed enhanced MRI technology to evaluate Millie's
050741 - response to treatment, following examination at UCSF on 090312.
050742 - ref SDS 81 1R5I At that time, the doctor related visual examination
050743 - can be misleading because radiation side effects present similarly to
050744 - IBC symptoms. ref SDS 81 F893 Millie's letter to the medical team on
050745 - 090220 cited patient history of difficulty relying on visual
050746 - observations alone to evaluate IBC, ref SDS 69 EA5P, and asked about
050747 - complementary radiology metrics using xray and PET scan technologies.
050748 - Doctor Hsu recalled today that Millie has asked several times in
050749 - recent weeks about enhanced MRI, also mentioned in the letter on
050750 - 090220, ref SDS 69 EA5T, citing research on 090129 indicating enhanced
050751 - MRI provides definitive diagnostics on IBC recovery. ref SDS 50 JU4H
050753 - ..
050754 - Doctor Hsu described difficulty at UCSF using enhanced MRI to assess
050755 - response treating IBC with radiation and hyperthermia, and seemed to
050756 - indicate radiation side effects are difficult to distinguish from IBC
050757 - symptoms in MRI scan work product. He feels direct visual examination
050758 - of skin tissue, though not diffinitive, as related on 090312,
050759 - ref SDS 81 F893, works as well or better than enhanced MRI in Millie's
050760 - case, previously researched on 090129. ref SDS 50 JU4H
050761 -
050763 - ..
050764 - Pre-medicated Gauze Not Prescribed at UCSF for Radiation Side Effects
050765 -
050766 - Millie suddenly remembered the question she wanted to ask about a
050767 - special gauze with medication that does not require the patient to
050768 - spread cream as a separate step. She said this takes a lot of time
050769 - and is very messy.
050771 - ..
050772 - Doctor Hsu was not familiar with this type of medicated guase to treat
050773 - radiation burns. He said that vendors for health care products come
050774 - up with variations all the time. Most are pulled from the market
050775 - because they turn out not to be effective; or, even when effective
050776 - they do not gain sufficient sales to justify manufacturing and
050777 - distribution costs. This problem of failure to discover usefulness
050778 - was cited by Clay Christensen in his book "The Innovator's Dilemma,"
050779 - reviewed on 990527. ref SDS 2 RP56
050781 - ..
050782 - Millie recalled her friend's sister used pre-medicated gauze to
050783 - recover from radiation burn caused by treatment for throat cancer, and
050784 - it seemed effective. This was 10 year ago. Evidently, the product
050785 - has not gained significant market share, or was pulled from
050786 - distirbution, as Doctor Hsu explains today.
050788 - ..
050789 - Millie thanked Doctor Hsu for taking time today to verify recovery is
050790 - on track, and explaining home care to reduce pain and suffering from
050791 - side effects by increasing the dose of Silvadene 1% cream, per above.
050792 - ref SDS 0 MO42
050793 -
050794 - [On 090330 2351 Millie's letter notifies medical team results
050795 - of Doctor Hsu's examination today show recovery from 6th
050796 - relapse of IBC is on track. ref SDS A6 E54L
050798 - ..
050799 - [On 090330 2351 letter to medical team relates discussion today
050800 - on no evidence of cancer in internal organs, and that Millie is
050801 - not currently getting chemotherapy. ref SDS A6 E53T
050803 - ..
050804 - [On 090331 2047 Millie reports new lightly sprinkled
050805 - inflammation rash on lower left arm, concerned may be IBC
050806 - recurrence, 7th relapse. ref SDS A7 Q69V
050808 - ..
050809 - [On 090401 0032 Doctor Hsu advises new red rash on lower
050810 - left arm likely IBC recurrence. ref SDS A8 R24X
050811 -
050812 -
050813 -
050814 -
050815 -
050816 -
050817 -
050818 -
050819 -
050820 -
0509 -