THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
S U M M A R Y
DIARY: May 14, 2009 11:46 PM Thursday;
Millie notifies medical team of UCSF treatment plan for 8th relapse cancer.
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Default Null Subject Account for Blank Record
0403 - ..
0404 - Summary/Objective
040501 - Follow up ref SDS 32 0000. ref SDS 31 0000.
040506 - ..
0408 - Background
040901 - On 090423 Millie met with Tara in the Breast Care Clinic at UCSF for
040902 - examination, which showed recovery from side effects of radiation and
040903 - hyperthermia treatments during February and March 2009. ref SDS 21 QR3M
040904 - This was confirmed in Millie's letter to the medical team later that
040905 - day on 090423. ref SDS 22 ZL6T Tara also found expanding IBC on the
040906 - lower left arm, ref SDS 21 DW6F, also confirmed in the letter to the
040907 - medical team. ref SDS 22 ZL7P
040909 - ..
040910 - At that time, on 090423 Tara planned to discuss with Doctor Hsu in the
040911 - UCSF Radition Oncology Department concerns about slow healing of
040912 - radiation side effects in Millie's breastbone area. ref SDS 21 R15K
040913 - Collaboration plans were further confirmed in Millie's letter to the
040914 - medical team on 090423. ref SDS 22 ZL7V
040916 - ..
040917 - In the afternoon on 090423 1315 Millie met with Doctor Hsu to check on
040918 - recovery from radiation side effects. ref SDS 21 4H5G Doctor Hsu gave
040919 - Millie a "thumbs up" that she was well enough to take time from
040920 - treatment to go on a 2-week vacation, ref SDS 21 FJ6K, and despite
040921 - confirming diagnosis of IBC relapse on the lower left arm, ref SDS 21
040922 - 5G4G, and despite growing doubts about vertical line of sking infected
040923 - either by IBC or radiation side effects. ref SDS 21 EX4I The doctor
040924 - recommended against taking a biopsy because the skin was thought to be
040925 - radiated, and surrounding tissue was radiated, and so this would delay
040926 - and prevent normal recovery from a biopsy wound. ref SDS 21 456H
040928 - ..
040929 - On 090423 2337 Millie's letter to medical team reports Doctor Hsu's
040930 - favorable report that IBC cannot recur in treated areas, because
040931 - nothing can grow in treated areas. ref SDS 22 ZL9V The letter further
040932 - confirms UCSF plans to treat IBC recurrence on the lower left arm as a
040933 - chronic disease with systemic agents prescribed by Doctor Rugo in the
040934 - Breast Care Clinic, ref SDS 22 ZL4X, and notes the meeting scheduled
040935 - with Doctor Rugo on 090514. ref SDS 22 ZL5Q
040937 - ..
040938 - Yesterday on 090510 1553, Millie submitted an agenda for the meeting
040939 - on 090514 to start treatment of the 8th relapse. ref SDS 23 QH9J The
040940 - letter was hurried to fit commitments for attending Mother's Day
040941 - family event. In the afternoon on 090510 1953, after retrurning home,
040942 - Millie sent a second letter to further explain the agenda for meeting
040943 - on Thursday 090514 at UCSF with Doctor Rugo. ref SDS 24 FJ3G
040945 - ..
040946 - This morning, called and talked to Amanda about coordinating to
040947 - facilitate the agenda for meeting with Doctor Rugo on Thursday,
040948 - 090514, particularly on requirements for blood tests at Kaiser, as
040949 - discussed in Millie's letter on 090510 1953. ref SDS 24 LJ7X
040951 - ..
040952 - Amanda requested a copy of Millie's letter to the medical team that
040953 - explains details about getting a lab. Millie sent the letter to
040954 - Amanda and requested clarification on requirements for a lab.
040955 - ref SDS 25 YN33 After sending the letter to Amanda this afternoon,
040956 - Kaiser notified Millie on 090511 1427 that Doctor Johnson has a
040957 - standing order at Kaiser for Millie to get a monthly blood test,
040958 - ref SDS 26 FJ5L; so, Millie then sent a letter notifying the medical
040959 - team that the blood draw will be done on 090512, so that people can be
040960 - prepared for a productive meeting at UCSF on 090514. ref SDS 26 FJ6G
040962 - ..
040963 - On 090511 2013, Doctor Rugo sent a letter saying that scope for labs
040964 - at Kaiser performed to support examinations at UCSF should be
040965 - determined by Kaiser rather than by UCSF. ref SDS 27 RF4J
040967 - ..
040968 - On 090511 2313, Millie notified Doctor Rugo that case study on 090325,
040969 - ref SDS 14 KZ6N, shows UCSF has been setting the scope on labs at
040970 - Kaiser for the past 3 years that are used to guide the work for
040971 - Millie's care at UCSF on referral from Kaiser, ref SDS 28 YN4L
040973 - ..
040974 - On 090512 Millie went to Kaiser for the lab. ref SDS 29 6Z4F
040976 - ..
040977 - On 090513 1654 Millie submitted results of Kaiser's lab to UCSF,
040978 - ref SDS 30 N54I, and notifies Doctor Mason at Kaiser's Outside
040979 - Referrals Department about more mistakes at Kaiser that causes poor
040980 - coordination of Millie's care at UCSF on referral from Kaiser.
040981 - ref SDS 30 ZH6W, and follows up Doctor Mason's plan on 090420 for
040982 - Kaiser to work harder with greater diligence to avoid mistakes in
040983 - order to continue doing labs at Kaiser rather than include labs for
040984 - referral at UCSF for Millie's treatments at UCSF. ref SDS 20 8G3N
040986 - ..
040987 - Millie received a letter from Pam who works for Doctor Mason in
040988 - Kaiser's Outside Referrals Department, and asking why the Outside
040989 - Referrals Department was notified about mistakes at Kaiser performing
040990 - labs required for Millie's care at UCSF on referral from Kaiser.
040991 - ref SDS 31 2T5L
040993 - ..
040994 - Millie replied to Pam's letter explaining patient history assists
040995 - Doctor Mason evaluate requirements for effective coordination because
040996 - chronic mistakes at Kaiser can be avoided by performing labs at UCSF
040997 - for Millie's care at UCSF. ref SDS 32 PQ5N
040999 - ..
041000 - On 090514 0830 Millie met with Doctor Rugo, ref SDS 33 TP9L, and the
041001 - doctor prescribed treatment in the MPA clinical trial to help Millie
041002 - recover from the 8th relapse of cancer. ref SDS 33 A13N
041004 - ..
041005 - This evening, Millie notified the medical team about the new treatment
041006 - and submitted the agenda for meeting tomorrow with Doctor Johnson at
041007 - Kaiser to perform oversight review...
041009 - 1. Subject: Examination and Work Plan 7th Relapse IBC
041010 - Date: Thu, 14 May 2009 23:59:16 -0700
041021 - ..
041022 - 2. Thanks for visiting today [at UCSF on 090514 0830, ref SDS 33
041023 - TP9L], as planned in your letter on [090331 and received in the
041024 - record on 090401 0121, and which delayed treatment 6 weeks in
041025 - order for the bleeding wound in Millie's breastbone area to
041026 - heal, diagnosed reaction to radiation. ref SDS 15 K56O].
041028 - [On 090607 2253 Millie notified medical team that wound in
041029 - the breastbone area diagnosed as reaction to readiation
041030 - treatment was worse; requested additional treatment planned
041031 - by UCSF. ref SDS 39 KS62
041033 - ..
041034 - [On 090609 Doctor Hsu advises that the wound in Millie's
041035 - breastbone area is not caused by reaction to radiation
041036 - treatments; the bleeding wound was caused by a mistake
041037 - performing radiation in February and March at UCSF that
041038 - missed treating IBC in the breastbone area and this
041039 - untreated IBC tumor has caused cancer to spread, and causes
041040 - problems in Millie's lungs that prevent breathing.
041041 - ref SDS 40 TP9L
041043 - ..
041044 - 3. Tara's examination this morning found IBC significantly
041045 - degraded in treated areas, and there has been substantial
041046 - recovery from previous severe side effects, ref SDS 33 5U4H,
041047 - following completion of radiation and hyperthermia performed by
041048 - Doctor Hsu, which ended on 090317. ref SDS 12 9L7K
041050 - ..
041051 - 4. After Tara's review, you also made an examination about 60
041052 - minutes later, ref SDS 33 IP6F, and concurred that objectives
041053 - of your referral on 090129 for radiation and hyperthermia to
041054 - achieve local control have been largely accomplished, so that
041055 - at this time there is a more manageable problem to solve.
041056 - ref SDS 33 HX4L
041058 - ..
041059 - 5. Your examination also aligned with Tara's finding of IBC
041060 - progression primarily on the left arm below the area treated
041061 - with radiation and hyperthermia. There are also minor IBC
041062 - sites on the periphery of treated areas roughly between the
041063 - left collar bone and the upper left shoulder, and on the left
041064 - side of the abdomen wrapping toward the back. ref SDS 33 3T4T
041066 - ..
041067 - 6. There was brief note during the meeting that progression of IBC
041068 - observed today aligns with rise in cancer marker CA 15-3 320
041069 - for the lab at Kaiser 2 days ago on 090512. ref SDS 29 PQTQ
041070 - You seemed to say the rise from 271 for the prior test 3 weeks
041071 - ago on 090423 is not significant at this time. You underscored
041072 - the importance of clinical assessment observing IBC rash.
041073 - ref SDS 33 UA3G
041075 - ..
041076 - 7. The left arm is swelled with lymphedema. Thankfully, there is
041077 - no Cellulitis. Tara seemed to feel that IBC may be a factor
041078 - causing sudden lymphedema in the left arm.
041080 - ..
041081 - 8. The right breast is also swelled with edema reacting to
041082 - radiation that ended on 090317. There is no sign that IBC has
041083 - spread to the right breast. ref SDS 33 AO3G Tara provided
041084 - guidance for home care with massage to treat swelling of the
041085 - right breast. ref SDS 33 AN97
041087 - ..
041088 - 9. There was also recommendation today that Doctor Johnson order a
041089 - consult with a therapist at Kaiser to assist with care of the
041090 - problem in the right breast, ref SDS 33 AO3G, similar to
041091 - therapy in 2006 that assisted recovery from lymphedema in the
041092 - left arm following surgery in late 2005 [reported on 060217,
041093 - ref SDS 3 T56K].
041095 - ..
041096 - 10. You seemed to indicate today that slight increase in lung
041097 - nodules reported in the CT test at Kaiser on 090413 may be side
041098 - effects from extensive radiation during February and March.
041099 - ref SDS 33 DE8M I reported episodes of cough and clearing my
041100 - throat that lasted a day or so, last week, but has not recurred
041101 - the past few days.
041103 - ..
041104 - 11. During the meeting today, you prepared a work up on my
041105 - treatment history drawing on data in the medical chart file
041106 - folder. ref SDS 33 AZ9N My current patient profile is listed
041107 - in the record meeting with Doctor Johnson at Kaiser on 090213.
041108 - ref SDS 11 ES7I and cites treatment history listed on 090121.
041109 - ref SDS 6 H16M
041111 - ..
041112 - 12. You described a number of modalities to implement Doctor
041113 - Johnson's request for UCSF to treat my cancer as a chronic
041114 - disease. ref SDS 33 YW48
041116 - ..
041117 - 13. There was extensive discussion of new research for treatment of
041118 - triple negative status. ref SDS 33 3F7M
041120 - ..
041121 - 14. During the meeting you wrote a letter to Doctor Johnson,
041122 - ref SDS 33 DI63, requesting approval to begin immediate
041123 - treatment [with MPA], ref SDS 33 CT9K, in order to prevent
041124 - cancer from cascading out of control again [as occurred
041125 - previously on 090202, ref SDS 8 Y15J].
041127 - ..
041128 - 15. Tomorrow I will meet with Doctor Johnson at Kaiser to expedite
041129 - referral, including ordering the CT test.
041131 - [On 090515 0952 Millie received letter from Doctor Rugo
041132 - saying that Kaiser has notified UCSF that Kaiser will not
041133 - continue treating Millie with the protocol recommended by
041134 - UCSF to recover from the 8th relapse of canser. ref SDS 34
041135 - LF3H
041137 - ..
041138 - [On 090515 1017 Millie notifies medical team that Doctor
041139 - Rugo's letter today was received, that Kaiser is
041140 - responsible for Millie's care, and Millie will meet with
041141 - the primary care doctor at Kaiser on 090515 1140 and
041142 - request that Kaiser prescribe care for Millie's 8th relapse
041143 - of cancer based on the best evidence, ref SDS 35 6Q8W, as
041144 - shown in Doctor Rugo's letter to Kaiser on 090514 0830.
041145 - ref SDS 33 DI63
041147 - ..
041148 - [On 090518 0017 Millie submits letter to Doctor Johnson
041149 - with copy to Doctor Rugo at UCSF, and transmitting a draft
041150 - to assist Doctor Johnson file his appeal with Member
041151 - Services assisting Kaiser implement Doctor Johnson's
041152 - strategy to treat Millie's cancer as a chronic disease in
041153 - time for Millie to recover from the 8th relapse of cancer.
041154 - ref SDS 36 R16I
041156 - ..
041157 - [On 090519 1536 Doctor Johnson changed his mind; he sent
041158 - the draft appeal to Doctor Mason, and tells Millie to file
041159 - an appeal with Member Services, which is incorrect since at
041160 - this time Millie has not been denied medical services; and
041161 - the doctor further says he is suddenly relieved of
041162 - responsibility performed continuously the past 8 years to
041163 - prescribe treatment for Millie to recover from cancer,
041164 - because Kaiser's Outside Referrals Department has a better
041165 - understanding of Medicare. ref SDS 37 5K7H
041167 - ..
041168 - [On 090616 1245 Doctor Rugo advised that "everybody is now
041169 - on board" for Millie's treatment going forward, ref SDS 41
041170 - D647, referring to Millie's proposal on 090518 treating
041171 - "Stage V" patients for long term survival. ref SDS 36 W93Q
041173 - ..
041174 - 16. You explained today that a hectic schedule leaves very limited
041175 - time for communication on complex case management involved in
041176 - my case. ref SDS 33 LS6I I regard my time with you, as with
041177 - Doctor Johnson, as very precious and valuable. All of my
041178 - efforts strive to position the medical team to work quickly and
041179 - accurately. I disagree that relying on summary bulleted items
041180 - without context of time nor correlations, implications and
041181 - nuance leads to better time management and improved care. At
041182 - the same time, I greatly respect your practice, expertise, and
041183 - accomplishments, and will continue to do all I can to ease your
041184 - burden.
041186 - [On 090529 1109 tried summarizing complexity of relevant
041187 - patient history for Doctor Rugo, and submitting analysis
041188 - for comprehensive care to the medical team. ref SDS 38 448K
041190 - ..
041191 - 17. Please bear with me on this letter, which is a very important
041192 - step in getting the next phase of care launched.