THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
S U M M A R Y
DIARY: March 11, 2009 10:47 AM Wednesday;
Millie letter to Kaiser coordinates getting labs for meeting at UCSF
tomorrow evaluating response to treatment.
2...Request Guidance from Kaiser on Review at UCSF to Recover from IBC
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Default Null Subject Account for Blank Record
0403 - ..
0404 - Summary/Objective
040501 - Follow up ref SDS B8 0000. ref SDS B6 0000.
040508 - ..
0408 - Background
040901 - 1. On 090218 1205 Millie requests explanation of treatment plan.
040902 - Doctor Rugo's letter to Kaiser on 090129 discussed hyperthermia
040903 - with Doxil, reported on 090130. ref SDS 66 TZ6H Has the plan
040904 - changed to use "lower dose" radiation rather than Doxil. Will
040905 - both be used, or some other agent? At this time, the record is
040906 - confusing about scope. Please explain initial assessment, and
040907 - prognosis. If this has already been submitted to Doctor
040908 - Johnson and Doctor Rugo, send a copy to Millie. ref SDS A7 TH5W
040910 - ..
040911 - 2. On 090218 1205 Millie reports to medical team good meeting with
040912 - Doctor Johnson at Kaiser on 090213. He seemed optimistic that
040913 - Millie might have 3 - 6 months of recovery, but will need
040914 - treatment from Doctor Rugo for cancer as a "chronic disease." A
040915 - week or so ago on 090210, Lena called to scheduling meeting
040916 - with Doctor Rugo on 090312 0830, reflecting comprehensive
040917 - follow up ordered by Kaiser during the meeting on 090203.
040918 - ref SDS A7 TH6U
040920 - ..
040921 - 3. On 090218 1205 Millie asks UCSF about obtaining records from Mt
040922 - Diablo Medical Center of prior radiation in 2002, which Doctor
040923 - Hsu discussed doing during the meeting at UCSF on 090205.
040924 - ref SDS A0 PN8H, and which cites Doctor Benz 2nd opinion at
040925 - UCSF on 041018 saying Millie likely cannot tolerate more
040926 - radiation. ref SDS A0 YO9G Was that so long ago, there is risk
040927 - from additional radiation now? ref SDS A7 TH6X
040929 - ..
040930 - 4. On 090218 1205 Millie asks UCSF about responding, ref SDS A7
040931 - TH7V, to the letter a week ago on 090209 requesting explanation
040932 - of side effects from radiation and hyperthermia, ref SDS A3
040933 - 745R, following Doctor Hsu's comments during the meeting on
040934 - 090205. ref SDS A0 GM4N Does the treatment plan address this
040935 - prospectively, or as needed? For example, as noted in the
040936 - letter on 090209, research found that side effects of radiation
040937 - are sometimes treated with Vitamin E plus pentoxifylline
040938 - (Trental), ref SDS A3 745R, which can be problematic with
040939 - Coumadin, so Gloria in the Coagulation Control Clinic at Kaiser
040940 - will need input. ref SDS A7 TH7V
040942 - ..
040943 - 5. On 090218 1205 Millie looking forward to starting treatment on
040944 - 090219, and despite worry about delays that prevent treatment
040945 - from being effective. ref SDS A7 TH7Y Millie Thanks Doctor Hsu
040946 - for expediting care, reported on 090203, ref SDS 86 XX5I, and
040947 - to Doctor Rugo for guidance through troubled waters, shown by
040948 - UCSF letter on 090202 1722. ref SDS 81 Y15J
040950 - ..
040951 - 6. On 090220 Millie's letter to Doctor Hsu requests...
040953 - a. Computer file of picture showing typical configuration
040954 - of hyperthermia treatment. ref SDS A9 XX5O
040956 - b. Computer file of picture showing typical configuration
040957 - of radiation treatment. ref SDS A9 XX5O
040959 - ..
040960 - c. Summary/general explanatoin of radiation and
040961 - hyperthermia treatments. Radiation on 090219 took much
040962 - longer than radiation Millie had in 2002, so there seems
040963 - to be a qualitative difference in technology and
040964 - process. Initially assumed IBC in the skin is not
040965 - treated with radiation, and is directed instead to treat
040966 - lymphadenopathy. After today, seems like maybe UCSF is
040967 - treating IBC with both radiation and hyperthermia?? Can
040968 - you please clarify. ref SDS A9 EA4Q
040970 - ..
040971 - d. Hyperthermia is a sonar process of some kind.
040972 - ref SDS A9 EA4T
040974 - ..
040975 - e. Orders for Millie's radiation and hyperthermia
040976 - treatments, similar to "Chemotherapy Orders" received
040977 - for treatments in the Infusion Clinic the past 2 years.
040978 - If possible, UCSF should submit a computer file to
040979 - reduce the time and cost for adding the treatment plan
040980 - to patient history. ref SDS A9 EA4W
040982 - ..
040983 - f. Metrics for evaluating when treatment concludes.
040984 - ref SDS A9 EA5P
040986 - ..
040987 - When Millie was treated at Kaiser with capecitabine and
040988 - Taxotere from Apr - Sep 2005, IBC rash seemed totally
040989 - resolved by visual examination. There was then a
040990 - mastectomy in October 2005. Biopsy of removed tissue
040991 - affirmatively reported no findings of IBC. Yet, years
040992 - later Millie is being treated again for IBC. ref SDS A9
040993 - EA5T This raises two questions...
040995 - ..
040996 - 1. How comprehensively can the current treatment
040997 - resolve IBC, and how is this assessed, beyond simple
040998 - visual inspection, and drop in the cancer marker?
040999 - Is there an xray, PET scan, or other diagnostic that
041000 - shows where we are for planning follow on steps?
041001 - ref SDS A9 EA5T
041003 - ..
041004 - 2. Can hyperthermia treatment be done again, if IBC
041005 - pops up later, as obviously happened to me? Will
041006 - there be follow up at least for a month or so in
041007 - radiation oncology, in case IBC does recur in the
041008 - near term? ref SDS A9 WF5I
041010 - ..
041011 - 7. On 090220 0915 Millie radiation and hyperthermia treatment at
041012 - UCSF. ref SDS B0 0G5I Millie receivd a copy of notes Chris
041013 - prepared of a meeting on 090209 with the UCSF medical team on
041014 - planning Millie's treatment. ref SDS B0 4254
041016 - ..
041017 - 8. On 090220 1548 reviewed UCSF memo dated 090209 explaining
041018 - treatment plan using radiation and hyperthermia for Millie to
041019 - recover from IBC. ref SDS B1 PR4Y
041021 - ..
041022 - 9. On 090220 1548 reviewed BSD paper explaining hyperthermia
041023 - treatment for recovering from cancer, ref SDS B1 GK6F,
041024 - including hyperthermia alone...
041026 - hyperthermia................. ref SDS B1 004P
041028 - ..
041029 - In combination with....
041031 - radiation.................... ref SDS B1 TT6L
041032 - chemotherapy................. ref SDS B1 0129
041033 - biological vaccines.......... ref SDS B1 0164
041035 - ..
041036 - 10. On 090223 0237 Millie's letter to medical team....
041038 - a. Thanks UCSF for submitting memo dated 090209 on
041039 - planning hyperthermia treatments. ref SDS B2 T47U
041041 - ..
041042 - b. Requests work plan for radiation treatments.
041043 - ref SDS B2 3N9J and ref SDS B2 T49U, similar to work
041044 - plan for hyperthermia.
041046 - ..
041047 - c. Notes clinical findings that swelled lymph node in left
041048 - supraclavicular occurred again, ref SDS B2 T48S, and
041049 - asks if this will be radiated, and what other areas
041050 - will be radiated. ref SDS B2 T49R
041052 - ..
041053 - d. Reports upper left arm looks worse than before
041054 - treatment started, asks if this is expected side
041055 - effects of radiation and hyperthermia treatment.
041056 - ref SDS B2 T49Y
041058 - ..
041059 - e. Reports Cellulitis and lymphadema have been continuing
041060 - problems on left arm, ref SDS B2 T44R, asks if Keflex
041061 - should be started to prevent recurrence caused by
041062 - treatment for IBC? ref SDS B2 T44W
041064 - ..
041065 - f. Requests picture of Millie getting hyperthermia
041066 - treatment showing configuration of work process.
041067 - ref SDS B2 T45S
041069 - ..
041070 - 11. On 090223 1428 Millie receives letter from Chris saying UCSF
041071 - looking for radiation treatment plan. ref SDS B3 PR4Y
041073 - ..
041074 - 12. On 090223 1428 Millie receives file of picture showing scope of
041075 - hyperthermia treatments at UCSF for recovering from IBC.
041076 - ref SDS B3 GZ4H
041078 - ..
041079 - 13. On 090309 Millie had blood draw at Kaiser for test to support
041080 - examination at UCSF on 090312 to evaluate response to
041081 - treatment. ref SDS B5 S65I Included INR test required once a
041082 - month to verify dose of Coumadin treatments of pulmonary
041083 - embolism. ref SDS B5 PU7Y Blood draw flushes port catheter,
041084 - also, required at least within 5 weeks, when patient not
041085 - getting chemotherapy treatments, as planned during meeting at
041086 - Kaiser on 090213. ref SDS A6 6P3F
041088 - ..
041089 - 14. On 090310 0351 Millie letter to medical team submits agenda for
041090 - meeting at UCSF on 090312 0800, ref SDS B6 PR4Y, scheduled by
041091 - Doctor Rugo on 090210 to evaluate response to treatment with
041092 - hyperthermia and Doxil to establish local control of IBC,
041093 - ref SDS A5 XU5N, and begin planning follow on care to treat
041094 - cancer as chronic disease, ordered by Doctor Johnson at Kaiser
041095 - on 090213. ref SDS A6 GD3I
041097 - a. Treatment plan - Millie's invites Doctor Hsu to attend
041098 - meeting with Breats Care Clinic on 090312 to collaborate on
041099 - clarifying work plan for Millie to recover from IBC based
041100 - on evaluation of response to treatment in relatino to
041101 - original plan for 4 - 6 weeks of radiation treatment.
041102 - ref SDS B6 O55W
041104 - ..
041105 - b. Slow recovery disappointing becasue breastbone area looks
041106 - much worse. ref SDS B6 O56X
041108 - ..
041109 - c. Blood test report of labs at Kaiser on 090309 requested for
041110 - submision to UCSF to support meeting on 090312 that
041111 - evaluates response to treatment. ref SDS B6 O63Q
041113 - ..
041114 - d. CA 15-3 blood test cancer marker diagnostic only objective
041115 - metric on response to treatment. ref SDS B6 O63T
041116 - Significant rise of cancer marker at Kaiser in recent
041117 - months, and extreme differences with cancer marker at UCSF
041118 - present challenges evaluating response to treatment.
041119 - ref SDS B6 O63Y
041121 - ..
041122 - e. Complicated diagnostic status increases requirements for
041123 - interim assessment of response to teratment. ref SDS B6
041124 - O64Y
041126 - ..
041127 - f. Anemia seems to be recovering evidenced by labs at Kaiser
041128 - on 090309 indicating effects of ending treatment on 090122
041129 - with sunitinib protocol. ref SDS B6 O65R
041131 - ..
041132 - g. Energy still low, but recovering shown by increased hiking
041133 - at Lafayette reservoir. May be able to tolerate adding
041134 - chemotherapy with hyperthermia if needed to recover from
041135 - IBC. ref SDS B6 O65V
041137 - ..
041138 - h. Shoulder injury recovering with increased range of motion
041139 - will be demonstrated during examination at Kaiser on 090312
041140 - 1300 in Orthopedics Department. ref SDS B6 O65Y
041142 - ..
041143 - i. INR 2.2 within target range shows eliminating sunitinib
041144 - chemotherapy treatment on 090122 has caused blood counts to
041145 - fall back to normal continuing Coumadin treatment for
041146 - pulminary embolism. ref SDS B6 O66R
041148 - ..
041149 - 15. On 090310 1142 called Kaiser to get the report for the blood
041150 - test on 090309 in time for distribution to the medical team for
041151 - being prepared to meet at UCSF on 090312. ref SDS B7 JH4H
041152 - Florida checked the computer and found that CA 15-3 has not yet
041153 - been posted to the report; she said to call back the next day
041154 - on 090311 just before noon to arrange for getting the full
041155 - report. ref SDS B7 QP6H
041157 - ..
041158 - 16. On 090310 1735 Millie received a letter from Tara suggesting
041159 - the meeting tomorrow on 090312 0800 at UCSF be deferred because
041160 - Doctor Rugo cannot attend, ref SDS B8 PR4Y, which was known on
041161 - 090210 when UCSF called and scheduled the meeting. ref SDS A5
041162 - XU5N
041164 - ..
041165 - 17. On 090311 1517 called Kaiser to get the report with CA 15-3 for
041166 - the blood test at Kaiser on 090309, and as planned in telecon
041167 - with Florida the day before on 090310. Problems contacting
041168 - someone at Kaiser to implement Kaiser's instructions required
041169 - being on hold for an hour. ref SDS C0 6Z4F In the afternoon,
041170 - Millie received blood test report from Kaiser without CA 15-3
041171 - diagnostic for evaluating response to treatment at UCSF on
041172 - 090312. ref SDS C0 1U7J
Agenda Meeting Scheduled 090312 UCSF Breast Care Clinic and Radiatio
250401 - ..
250402 - Request Guidance from Kaiser on Review at UCSF to Recover from IBC
250404 - Follow up ref SDS B8 PR4Y, ref SDS B6 PR4Y.
250406 - Yesterday, on 090310 1735 Millie received a letter from Tara
250407 - responding to the agenda on a meeting scheduled by UCSF for tomorrow
250408 - on 090312 evaluating response to treaement, and which was submitted to
250409 - the medical team in a letter earlier on 090312 0351. ref SDS B6 PR4Y
250411 - ..
250412 - Since Tara asks whether the meeting should be deferred until Doctor
250413 - Rugo can attend, and since Doctor Rugo asked her assistant on 090210
250414 - to schedule the meeting on 090312 with Tara because the doctor would
250415 - not be available, there is an implication that Tara may feel
250416 - uncomfortable about making an examination without having Doctor Rugo
250417 - available to confirm findings.
250419 - ..
250420 - Millie sent the following letter to Kaiser asking for guidance on
250421 - whether to proceed with the meeting, or defer until Doctor Rugo is
250422 - available, which at this time is unknown.
250424 - 1. Subject: Blood Test report for Meeting at UCSF tomorrow
250425 - Date: Wed, 11 Mar 2009 10:53:20 -0700
250433 - ..
250434 - 2. I am on my way to a weekly meeting at the Wellness Community.
250436 - ..
250437 - 3. Rod called your office this morning to coordinate getting the
250438 - report for the blood test I had on Monday, to prepare for the
250439 - meeting tomorrow at UCSF, ref SDS C0 6Z4F, as set out in the
250440 - letter to the medical team yesterday on March 10. ref SDS B6
250441 - PR4Y
250443 - ..
250444 - 4. Think he talked to Lupe (not sure about the name), but she said
250445 - you have a new system, and so we cannot reach Arlette, Florida,
250446 - Bella, et al, ref SDS C0 G68F, to follow up arrangements which
250447 - Florida discussed yesterday. ref SDS B7 8F60
250449 - [On 090325 0830 primary care physician disappointed by
250450 - continual delays submittng data to UCSF, and notes conflict
250451 - with requirements to streamline delivery of care in order
250452 - to treat Millie's cancer at this time as a chronic disease.
250453 - ref SDS C5 RB3G
250455 - ..
250456 - 5. My meeting at the Wellness Community ends at 1230. I wanted to
250457 - swing by the hospital and pickup the report with CA 15-3 added,
250458 - and ANC entered, as planned in a call with Florida yesterday.
250459 - seems that since yesterday, you have implemented a new system,
250460 - and so cannot talk to Florida today to confirm arrangements.
250461 - ref SDS C0 G697 Since the front desk and telephones are closed
250462 - at lunch time until 1330, wanted to ask Florida to leave the
250463 - report in an envelope with my name on the counter at the front
250464 - desk.
250466 - ..
250467 - 6. Alternatively, I could use the white phone in the lobby next
250468 - the door leading into the Chemotherapy Clinic.
250470 - ..
250471 - 7. Since I will be tied up until 1230, can you please call Rod and
250472 - verify arrangements. Recall you two planned in the meeting on
250473 - 090213 to have a telecon, so this would be a good time for that
250474 - discussion on progress of referral for radiation and
250475 - hyperthermia at UCSF.
250477 - [On 090311 1431 Millie's letter to medical team thanks
250478 - Kaiser for support with getting the report for the lab on
250479 - 090309 to support the meeting at UCSF on 090312.
250480 - ref SDS B9 5Z9K
250482 - ..
250483 - 8. On 090210 Doctor Rugo scheduled a meeting for tomorrow, 090312
250484 - 0800. She later advised that her schedule changed and asked me
250485 - to meet with Tara alone. ref SDS A5 XU5N Tara is an excellent
250486 - NP, she has done all the examinations since last September,
250487 - when Brigid was called up for military duty of 1 year. Tara is
250488 - very familiar with my condition. During the meeting on 090129
250489 - she expressed a lot of confidence in Doctor Rugo's prescription
250490 - to recover local control with hyperthermia and doxil, and said
250491 - she has treated other patients with IBC who have recovered with
250492 - hyperthermia [cited in the letter to the medical team on
250493 - 090130. ref SDS 66 4S8O]. Based on this experience, I agred
250494 - [during the call from Lena on 090210] to meet with Tara
250495 - tomorrow. ref SDS A5 1X7W
250497 - ..
250498 - 9. I want to get an interim assessment of progress after 3 weeks
250499 - of treatment, scheduled for 4 - 6 weeks [called out in the
250500 - agenda for the meeting, presented in the letter to the medical
250501 - team yesterday on 090310 0351, ref SDS B6 O64Y]. How has the
250502 - patient progressed in relation to expectations on 090129 [as
250503 - reported on 090130. ref SDS 66 HK3V Since the treatment was
250504 - changed from the original proposal to use hyperthermia with
250505 - Doxil, to instead use lower dose radiation [reported on 090205,
250506 - ref SDS A0 EY5F], what considerations can be made to add Doxil
250507 - or anotehr agent?
250509 - ..
250510 - 10. I also want to follow up your suggestion on 090213 for UCSF to
250511 - begin thinking about follow on planning to treat my cancer as a
250512 - "chronic disease," ref SDS A6 GD3I, I think is the phrase you
250513 - used.
250515 - ..
250516 - 11. As you can see, Tara sent me a letter yesterday afternoon,
250517 - saying Doctor Rugo is out of town, which I already knew [from
250518 - telecon on 090210 scheduling the meeting on 090312, ref SDS A5
250519 - XU5N], and that she, Tara, cannot discuss treatment options, so
250520 - she asks if I want to proceed with the meeting? ref SDS B8 PR4Y
250522 - [On 090311 1431 Millie's letter to UCSF responds to Tara's
250523 - letter on 090310 1935 proposing to defer meeting on 090312,
250524 - and Millie requests date to reschedule meeting with Doctor
250525 - Rugo for planning treatment of Millie's IBC as a chronic
250526 - disease. ref SDS B9 O15X
250528 - ..
250529 - 12. This sounds like she does not want to take responsibility for
250530 - doing a meeting without the doctor. She has done many of these
250531 - meetings without the doctor previously. When Doctor Rugo
250532 - attends a meeting, she spends from 5 - 15 minutes, to optimize
250533 - use of her expertise treating a lot of patients. This requires
250534 - careful examination, and analysis of patient presentation.
250535 - Tara is very good doing examinations, i.e. thorough in her
250536 - reporting. It is difficult to see how progress review at the
250537 - 75% mark of the treatment plan, can do anything but assist
250538 - Doctor Rugo, when she has time to think about my case.
250540 - ..
250541 - 13. My inclination is to have the meeting, but I am concerned about
250542 - putting Tara in an uncomfortable position. I got the feeling
250543 - from the meeting on 090129 and earlier email traffic that there
250544 - were some issues surrounding changing my last treatment.
250545 - Recall there were delays at UCSF, which may have placed us in a
250546 - difficult position [see case study patient history on 090204.
250547 - ref SDS 99 MN5I].
250549 - ..
250550 - 14. In any case, could you call Rod (************) and discuss your
250551 - sense about doing the meeting tomorrow, or standing down, as
250552 - Tara suggests.
250554 - [On 090311 1431 Kaiser did not respond to Millie's request
250555 - for support, ref SDS B9 5Z9K, Millie therefore responded to
250556 - Tara's letter on 090310 1935, which proposed deferring
250557 - meeting on 090312, and Millie requests date to reschedule
250558 - meeting with Doctor Rugo for planning treatment of Millie's
250559 - IBC as a chronic disease. ref SDS B9 O15X
250561 - ..
250562 - [On 090312 0800 meeting at UCSF took place; complexity
250563 - compounded evaluating Millie's response to treatment for
250564 - prescribing care after radiation and hyperthermia, because
250565 - interim analysis shows worsening symptoms signal recovery
250566 - from strong reaction to radiation indicates IBC receiving
250567 - significant treatment. ref SDS C1 9L7K Without cancer
250568 - marker CA 15-3 results for the blood test on 090309, the
250569 - only metric of recovery is visual observation based on
250570 - experience. ref SDS C1 YX5F Tara clarified that she has
250571 - very limited experience caring for patients with IBC who
250572 - have been treated with radiation and hyperthermia in the
250573 - UCSF Radication Oncology Department, ref SDS C1 SP8J;
250574 - Doctor Hsu cited extensive experience treating IBC patients
250575 - with radiation and hyperthermia, and advised that
250576 - examination shows rising IBC symptoms are actually evidence
250577 - of side effects from treatment with radiation and
250578 - hyperthremia, and this worsening condition will get worse,
250579 - but eventually recover, and further signals expected
250580 - recovery from IBC. ref SDS C1 F84U
250582 - ..
250583 - 15. I will stop by on the way home from the Community Wellness
250584 - meeting and get the blood test report.
250586 - [...in another record today on 090311 Millie went to Kaiser
250587 - and got the report for the blood test at Kaiser on 090309,
250588 - but without the CA 15-3 diagnostic needed for the meeting
250589 - at UCSF on 090312 to evaluate response to treatment.
250590 - ref SDS C0 1U7J
250592 - ..
250593 - [On 090325 0830 primary care physician disappointed by
250594 - continual delays submittng data to UCSF, and notes conflict
250595 - with requirements to streamline delivery of care in order
250596 - to treat Millie's cancer at this time as a chronic disease.
250597 - ref SDS C5 RB3G