CONTACTS
SUBJECTS
Right Axillary Lymph Node Minimally Enlarged CT Test 080212 Findings
0403 -
0403 - ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 43 0000. ref SDS 37 0000.
040502 -
040503 -
040504 -
040505 -
040506 -
040508 - ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie is meeting today with Doctor Rugo 2 weeks ahead of the schedule
040902 - to start the next cycle on 080306, because CT test, CA 15-3 cancer
040903 - marker, and rising IBC rash raise concerns about progression of
040904 - disease. This is the criteria for adding Carboplatin to complement
040905 - cetuximab, which is the purpose of the clincial study.
040907 - ..
040908 - During the meeting 080207 Doctor Rugo observed spreading IBC disease,
040909 - ref SDS 43 GH5H This included comparing photograhic evidence.
040910 - ref SDS 43 GH57 She ordered the CT test to be expedited. ref SDS 43
040911 - GH5M On 080213 UCSF reported CA 15-3 63, ref SDS 48 VR8N, for the
040912 - labs performed at UCSF on 080207. ref SDS 44 A16M CT test at Kaiser
040913 - on 080212, ref SDS 47 FP5H, seems to indicate progression of disease
040914 - based on finding more adenopathy in the right axilla, reviewed on
040915 - 080215. ref SDS 50 EO8F
040917 - ..
040918 - Millie's letter to UCSF this morning sets the agenda. ref SDS 51 1K9T
040920 - ..
040921 - Mary Lou, RN NP, did the initial examination because Brigid was busy
040922 - today treating other patients.
040924 - ..
040925 - Mary Lou and Jackie were again concerned about slow recovery of severe
040926 - brusing still on the upper right arm, caused by the fall nearly a
040927 - month ago on 080125. ref SDS 40 N65K Mary Lou was sensitive and
040928 - thorough asking again about circumstances and care related to this
040929 - incident, following the practice on 080207 when Doctor Rugo made
040930 - initial examination of bruising from the fall on 080125. ref SDS 43
040931 - 6V4L
040933 - ..
040934 - Millie said she still cannot remember exactly what happened, which
040935 - aligns with guidance on head injuries, shown in documentation received
040936 - from Kaiser on 080204. ref SDS 42 U85F Millie explained examination
040937 - at Kaiser found no significant injury. ref SDS 42 JQ8N She has had no
040938 - lasting effects, other than the bruising on the right arm and two
040939 - black eyes, which are now mostly healed.
040940 -
040941 -
0410 -
SUBJECTS
Default Null Subject Account for Blank Record
0503 -
050401 - ..
050402 - Sharing Information Resisted Despite HIPAA Support for Patient
050403 - Photographs Evaluate Progression Cancer Doctors Resist Sharing
050404 -
050405 - Doctor Rugo was concerned about submitting photographic evidence of
050406 - patient history that supports determinations on progression of
050407 - disease, which impacts decisions on increasing treatment. This was
050408 - requested in Millie's letter to UCSF on 080208. ref SDS 45 OO8Y
050409 - Jackie's letter on 080214 advised that she had submitted this matter
050410 - to the doctor for approval. ref SDS 49 N94Q
050412 - ..
050413 - Today, the doctor seemed aware that Millie is entitled to timely
050414 - access to her medical records that support case management, shown by
050415 - research reported on 071009. ref SDS 21 TG3K Jackie commented that
050416 - pictures are not required for standard of care. The letter to UCSF on
050417 - 080214, noted that Millie needs the pictures for collaboration to
050418 - assess with Doctor Rugo and the primary care physician at Kaiser the
050419 - basis for medical decisions on treatment. ref SDS 49 VX8V
050421 - ..
050422 - Doctor Rugo indicated concern that clinical trial management wants the
050423 - pictures for study purposes before release to anyone else, including
050424 - the patient.
050426 - ..
050427 - Jackie commented about publication of email on the Internet. She
050428 - seemed to relate having seen with an Internet search her name and
050429 - Brigid's name in SDS records, and this became a confused discussion
050430 - about privacy of email, that got related to the photographs in the
050431 - minds of the medical team. After the meeting a search showed last
050432 - names for both Jackie and Brigid were listed in one record out of
050433 - hundreds reporting their work. These names were removed. Jackie and
050434 - Brigid are listed in other people's records on the Internet, but not
050435 - in SDS.
050437 - ..
050438 - Another concern is to avoid losing photographs, which UCSF reported on
050439 - 080207, ref SDS 43 GH57, and cited in the letter to UCSF on 080214.
050440 - ref SDS 49 VX8Y
050442 - ..
050443 - The doctor proposed that UCSF will release the pictures used to
050444 - evaluate progerssion of disease, when Millie begins treatment with
050445 - Carboplatin. This begs the question of doctor patient partnerhip
050446 - making medical decisions on progression of disease that requires
050447 - adding Carboplatin.
050448 -
050449 - [On 080320 Millie requests photographs from patient history
050450 - in the medical chart showing measureable disease after
050451 - completing 1st arm of cetuximab and Carboplatin clinical
050452 - trial, and to establish baseline for evaluating measurable
050453 - disease staring 2nd arm of clinical trial adding
050454 - Carboplatin to the treatment. ref SDS 58 IK3T
050455 -
050456 -
050457 -
0505 -
SUBJECTS
Default Null Subject Account for Blank Record
0603 -
060401 - ..
060402 - Frustrating Cannot Find Work History in Medical Chart on Computer
060403 -
060404 - Doctor Rugo asked about change in CA 15-3 cancer marker from the
060405 - recent test on 080207 compared with results from prior labs on 080110?
060407 - ..
060408 - The doctor thumbed through papers in Millie's medical chart, which now
060409 - comprises two thick folders. The doctor was annoyed and exasperated
060410 - because information on Millie's cancer marker needed to perform the
060411 - work was not easily accessible. After only 10 - 20 seconds, the
060412 - doctor gave up and commented something like...
060413 -
060414 - "As usual, probably can't find it."
060416 - ..
060417 - This aligns with practice at Kaiser, shown in case study on 061024
060418 - 1427. ref SDS 7 9W4O, and in the larger community of government and
060419 - business enterprise, also, reported on 061024 1427. ref SDS 7 JD9L
060420 -
060421 - [On 080529 Lynn took time to enter missing information in the
060422 - Medical Chart. ref SDS 62 L255
060424 - ..
060425 - [On 080724 Brigid cannot find CT test in the medical chart.
060426 - ref SDS 63 TG96
060428 - ..
060429 - [On 080529 Lynn took time again to enter missing information in
060430 - the Medical Chart. ref SDS 64 4B6J
060432 - ..
060433 - [On 080821 Lynn cannot find report in the medical chart of prior
060434 - examination on 080529 for comparision to evaluate progression of
060435 - cancer. ref SDS 64 YX4G
060437 - ..
060438 - [On 090121 Glenna cannot find Doctor's plans in UCSF records for
060439 - treatments that can help Millie recover from IBC; asks Millie for
060440 - assistance getting patient history from SDS "well ordered
060441 - records." ref SDS 68 Y67L
060443 - ..
060444 - [On 090514 0830 doctor cites hectic schedule with many patients
060445 - who need emergency care; so, there is not enough time for
060446 - comprehensive communication to avoid mistakes. ref SDS 69 LS6I
060448 - ..
060449 - [On 091022 0700 Doctor Brezinski had problems finding information
060450 - in patient's medical chart at the VA to guide anesthesia for heart
060451 - surgery. ref SDS 71 JF4I
060453 - ..
060454 - [On 091208 1300 Doctor Stewart and Doctor Tabrizi could not find
060455 - patient history in VA records on achalasia, including medical
060456 - tests, required to plan scope of Heller Myotomy surgery to resolve
060457 - achalasia. ref SDS 72 BJ3H
060459 - ..
060460 - [On 100325 0800 Doctor Graham could not find the letter sent that
060461 - transmitted results implementing 2nd opinion. ref SDS 73 AO5F
060463 - ..
060464 - Millie explained that CA 15-3 was 63 in the most recent test reported
060465 - in the record on 080207. ref SDS 44 A16M This is a 12 point increase
060466 - from 51 reported for the prior test on 080110, ref SDS 38 A16M, noted
060467 - in the letter to UCSF and Kaiser earlier today. ref SDS 51 1K9T, and
060468 - which is 400% greater than prior increases, reported in analysis on
060469 - 080214. ref SDS 48 VR8N
060471 - ..
060472 - There was discussion that CA 15-3 sudden increase might be due to the
060473 - fall Millie suffered on 080125, only a week or so prior to the test on
060474 - 080207. This was mentioned in a letter to UCSF on 080214, ref SDS 49
060475 - WH7H, citing analysis at that time on 080214. ref SDS 48 VR8N
060477 - ..
060478 - Mary Lou seemed to indicate that cancer markers can sometimes react to
060479 - sudden changes in enzymes that occur from traumatic events like head
060480 - and arm injuries, which Millie suffered on 080125, ref SDS 40 N65K,
060481 - about halfway between the test on 080110 and on 080207.
060483 - ..
060484 - The doctor noted that an increase from 51 to 63 over four (4) weeks
060485 - compared to changes of 2 - 4 points during prior months is not very
060486 - significant.
060487 -
060488 -
060490 - ..
060491 - IBC Spreading Shown by Examination
060492 -
060493 - The doctor examined IBC to complement Mary Lou's initial assessment,
060494 - per above. ref SDS 0 IN4G She feels spread of disease is occurring,
060495 - confirming impression from examination 2 weeks ago on 080207.
060496 - ref SDS 43 GH5H The rate of progression seems restrained by treatment
060497 - with cetuximab, but adding Carboplatin should now be considered.
060499 - ..
060500 - [On 080305 primary care physician at Kaiser concurs with
060501 - planning to add Carboplatin at this time in the treatment
060502 - protocol. ref SDS 53 N15N
060504 - ..
060505 - [On 080821 the doctor examins Millie again, and feels there has
060506 - been improvement recovering from the 4th relapse of IBC.
060507 - ref SDS 64 4A4O
060508 -
060510 - ..
060511 - Progression Disease Not Very Rapid Shown by CT Test 080212
060512 -
060513 - The doctor indicated findings in the CT test at Kaiser on 080212,
060514 - reviewed a few days later on 080215, ref SDS 50 EO8F, and submitted to
060515 - UCSF in the letter this morning, ref SDS 51 1K8T, do not signal
060516 - distant metastasis nor rapid advance of disease that requires
060517 - immediately increasing treatment, though the CT test findings do
060518 - suggest that IBC is starting to increase. ref SDS 50 RX6J The doctor
060519 - said that IBC seems to be rising, but very slowly, and noted that
060520 - deferring increased treatment by adding Carboplatin to cetuximab does
060521 - not pose a significant risk for Millie's long term prognosis treating
060522 - IBC relapse.
060523 -
060525 - ..
060526 - Status Change Not Shown Biopsy 040419
060527 -
060528 - Doctor Rugo indicated that UCSF received the report from Kaiser for
060529 - the biopsy performed on 040419 which evaluated status change, and
060530 - which she requested on 080207. ref SDS 43 6S6G This was requested
060531 - from Kaiser the next day on 080208, ref SDS 45 OO5W, and followed up
060532 - with correspondence on 080214, 080215, and again today. ref SDS 51
060533 - 1K4S
060535 - ..
060536 - The doctor feels the biopsy does not indicate status change from
060537 - triple negative, which would increase options to treat Millie's 4th
060538 - relapse with IBC when progression of disease occurs, as now seems
060539 - likely.
060540 -
060541 - [On 081016 letter to medical team confirms Doctor Rugo's
060542 - request for Kaiser to biopsy of lymph node in left
060543 - supraclavicular, and orders evaluation of triple negative to
060544 - investigate expanding options to treat Millie's 5th relapse of
060545 - IBC. ref SDS 65 J36R
060547 - ..
060548 - [On 081107 core biopsy at Kaiser in Walnut Creek performed to
060549 - evaluate status change. ref SDS 66 496L
060551 - ..
060552 - [On 081119 Kaiser submits summary of final pathology report,
060553 - ref SDS 67 5O8G, for the biopsy on 081107, ref SDS 66 496L, and
060554 - it shows status is unchanged, still triple negative.
060555 - ref SDS 67 UQ5P
060557 - ..
060558 - Decided to defer further consideration of adding carboplatin until the
060559 - meeting on 080306 to review starting the next cycle of treatment.
060560 -
060561 - [On 080304 Millie grateful for professional, sensitive manner
060562 - the doctor transitions treatment for possible advancing
060563 - disease. ref SDS 52 TN9Q
060565 - ..
060566 - [On 080306 Doctor orders changing treatment adding Carboplatin
060567 - to cetuximab. ref SDS 54 459G
060569 - ..
060570 - [On 080313 first chemotherapy treatment with Carboplatin added
060571 - to cetuximab. ref SDS 56 TZ8I
060573 - ..
060574 - [On 030320 blood counts were too low for treatment with
060575 - Carboplatin, and so Millie received treatment only with
060576 - cetuximab. ref SDS 59 SE5R
060578 - ..
060579 - This was good news to Millie who has been more fatigued after 60+
060580 - weekly treatments, and so is not looking forward to additional drag on
060581 - energy that will result from adding another chemotherapy drug, with
060582 - attendant requirements for treatments to maintain blood counts, as
060583 - discussed on 080207, ref SDS 43 E14H, and presented in the letter to
060584 - UCSF earlier today. ref SDS 51 1K4P
060586 - ..
060587 - [On 080305 Millie coping with emotional stress and depression
060588 - from mounting medical issues, ref SDS 53 KT4J, including
060589 - difficulty maintaining blood counts essential for safe
060590 - chemotherapy to treat cancer. ref SDS 53 PC6M
060592 - ..
060593 - [On 080305 Prozac prescribed to help manage stress. ref SDS 53
060594 - 5L5M
060596 - ..
060597 - [On 080306 blood counts NEUTS 2.75 (ANC 2750) rise unexpectedly
060598 - to highest level in over a year provides safety for increasing
060599 - treatment by adding Carboplatin to treat expanding cancer
060600 - (IBC), and relieves anxiety, worry, and doubt. ref SDS 54 033B
060602 - ..
060603 - [On 080307 letter to primary care physician at Kaiser confirms
060604 - worry about blood counts; reports relief from sudden and
060605 - unexpected rise to highest level in over a year. ref SDS 55
060606 - HS6R
060608 - ..
060609 - [On 080314 Millie reports energetic day after 1st treatment
060610 - with Carboplatin chemotherapy. ref SDS 57 4W3H
060612 - ..
060613 - [On 080402 Millie reported a burst of energy increasing
060614 - exercise more than any time in the past 4 years. ref SDS 60
060615 - Q25V
060617 - ..
060618 - [On 080409 Millie reports to Kaiser being thrilled by
060619 - improvement recovering from IBC disease, and that energy and
060620 - exercise have increased despite adding Carboplatin chemotherapy
060621 - to cetuximab for the clinical trial regimen; causing reduced
060622 - emotional trauma from stress, anxeity, doubt, and worry about
060623 - the future. ref SDS 61 W14P
060624 -
060625 -
060626 -
060627 -
060628 -
0607 -