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: December 28, 2006 02:33 PM Thursday;
Rod Welch
Kaiser submits Millie's case to UCSF for consideration clinical drug trials.
1...Summary/Objective
2...Symptoms Cor Pulmonale Continue Fatigue Shortness Breath Heavy Chest
3...Cor Pulmonale Heart Disorder Request Examination Heart Specialist
4...Heart Examination Enlarged Right Ventricle Request Heart Specialist
5...Enlarged Right Ventricle Examination Heart Specialist Patient Request
6...Case Study Request Examination Heart Specialist Resume Exercise Gym
7...Kaiser Review Patient Status Recovery 5 Year Case History
8...UCSF 2 Drug Trial Proposals Kaiser Collaborating to Help Millie
9...Drug Trials Kaiser Collaborating UCSF Consider Proposals Help Millie
10...Measurable Disease IBC Spreads from Left to Right Breast
11...PET/CT Test Requested Measurable Disease Spread Left to Right Breast
ACTION ITEMS..................
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1...The purpose of Tumor Board review provides fresh eyes, with no history
CONTACTS
SUBJECTS
Enlarged Right Ventricle Cor Pulmonale Heart Disorder Doctor Fails R
2303 -
2303 - ..
2304 - Summary/Objective
2305 -
230501 - Follow up ref SDS 57 0000. ref SDS 56 0000.
230502 -
230503 - Doctor clarifies prior understandings saying heart disorder Cor
230504 - Pulmonale diagnosed in CT scan on 060930 likely caused by pulmonary
230505 - embolism, and does not discuss patient's request for examination by
230506 - heart specialist in connection with rising symptoms, and clearance to
230507 - resume work outs in the gym to restore physicial fitness. ref SDS 0
230508 - JU7L Ending treatment for pulmonary embolism on 051007 could be
230509 - related to diagnosis of heart disorder. ref SDS 0 XW8K Case study
230510 - shows referral to heart doctor for backup analysis presents difficult
230511 - challenge for Kaiser's Team Care practice. ref SDS 0 JU9L Received a
230512 - good summary of patient history Kaiser submitted to UCSF for
230513 - qualifying Millie to participate in a drug trial. The doctor
230514 - describes this summary as providing a 5-year review requested by the
230515 - patient for a Tumor Board. ref SDS 0 OU5K A summary by the primary
230516 - care physician does not accomplish purpose of Tumor Board for detailed
230517 - analysis with "fresh eyes," and diverse experience, expertise.
230518 - ref SDS 0 NP8G
230519 -
230520 -
230521 -
230522 -
230524 - ..
2306 -
2307 -
2308 - Progress
2309 -
230901 - Symptoms Cor Pulmonale Continue Fatigue Shortness Breath Heavy Chest
230902 - Cor Pulmonale Heart Disorder Request Examination Heart Specialist
230903 - Heart Examination Enlarged Right Ventricle Request Heart Specialist
230904 - Enlarged Right Ventricle Examination Heart Specialist Patient Request
230905 -
230906 - Follow up ref SDS 57 VC4M, ref SDS 54 VC4M.
230907 -
230908 - Background on Millie requesting referral for examination of heart
230909 - disorder by a cardiologist is reported in the record on 061227,
230910 - ref SDS 57 VC4M, including concern that the doctor is not aware of
230911 - rising symptoms for pulmonary embolism, and Cor Pulmanele. ref SDS 57
230912 - 645I
230914 - ..
230915 - Millie received ref DRT 1 0001 from primary care physician responding
230916 - to her letter, ref DIP 9 0001, submitted yesterday to Kaiser on 061227
230917 - requesting referral to a heart specialist for examination of heart
230918 - disorder, ref SDS 57 KX6N, described as Cor Pulmonale in research on
230919 - 061012. ref SDS 44 L35J
230921 - ..
230922 - Primary care physician says...
230923 -
230924 - "Most likely" your enlarged right ventricle is due to your
230925 - previous pulmonary emboli. Advanced cor pulmonale will have
230926 - edema involving the lower extremities. When those advanced
230927 - symptoms appear, then treatment with diuretics can be helpful.
230928 - ref DRT 1 0001
230930 - ..
230931 - The doctor clarifies understandings from the meeting on 061020 that
230932 - Cor Pulmonale enlarged right ventricle heart disorder is not related
230933 - to pulmonary embolism, ref SDS 45 3Q5H, saying today that most likely
230934 - they are connected, with pulmonary embolism causing Cor Pulmonale.
230935 -
230936 - [On 080507 Millie reports spike in heart beat (pulse)
230937 - while laying down in bed; case study shows occassional
230938 - spike in pulse reported by heart monitor during
230939 - exercise, evaluated previously as defective equipment.
230940 - ref SDS 65 CK4K
230942 - ..
230943 - Research on 061012 indicates that enlarged right ventricle causes
230944 - pulmonary embolism, ref SDS 44 IN3H, rather the other way around
230945 - presented in the doctor's letter today. ref SDS 0 JU7L
230947 - ..
230948 - Research on 061012 further indicates symptoms of Cor Pulmonale heart
230949 - disorder enlarged right ventricle are fatigue, shortness of breath,
230950 - heavy chest, dizziness, ref SDS 44 IR46, which Millie has suffered for
230951 - many months now, cited on 061012, ref SDS 44 GH4M, and noted in case
230952 - study today. ref SDS 0 JU9L
230954 - ..
230955 - The doctor seems to associate ending treatment last year for pulmonary
230956 - embolism on 051007, ref SDS 27 RZ4I, with finding of enlarged right
230957 - ventricle in the CT test on 060930, reported on 061012, ref SDS 44
230958 - 7E5L, and further reporting at that time pulmonary embolism
230959 - recurrence. ref SDS 44 294Q
230961 - ..
230962 - On 050729 the doctor attributed symptoms of pulmonary emobolism
230963 - chronic fatigue, shortness of breath, heavy chest, etc., to loss of
230964 - fitness from lack of exercise due to debilitating effects of
230965 - chemotherapy, and noted that the patient's plans to work out in the
230966 - gym would help resolve the issue. ref SDS 24 XX7G
230967 -
230969 - ..
230970 - Case Study Request Examination Heart Specialist Resume Exercise Gym
230971 -
230972 - Reason for seeking expert opinion on Cor Pulmonale is difference
230973 - between recovering from pulmonary embolism after notice on 041104. At
230974 - that time, after a few weeks of treatment, symptoms were relieved and
230975 - Millie resumed working out in the gym. Recovery has not occurred with
230976 - treatment for recurrence, as reported in Millie's letter to Kaiser on
230977 - 061027. ref SDS 46 MS5P
230979 - ..
230980 - Millie wants to avoid advanced complications in the lower extremities,
230981 - cited in the doctor's letter today, per above, ref SDS 0 JU7L, and
230982 - regain health for vigorous exercise that has maintained her vitality,
230983 - immune system, and zest for life, reported on...
230984 -
230985 - 1. Millie asked the doctor how serious
230986 - pulmonary embolism, how enlarged
230987 - is the right ventricle, can she
230988 - resume working out at the
230989 - gym to restore
230990 - fitness........................... 061020, ref SDS 45 VJ4J
230992 - ..
230993 - 2. Millie letter advises Kaiser that
230994 - symptoms pulmonary embolism continue
230995 - fatigue, shortness of breath; asks
230996 - about prognosis for getting back in
230997 - the gym to improve fitness, which
230998 - previously were attributed to
230999 - symptoms for pulmonary
231000 - embolism.......................... 061027, ref SDS 46 MS5P
231002 - ..
231003 - 3. Millie reported continuing shortness
231004 - of breath, fatigue; hectic schedule
231005 - doctor did not have time to discuss
231006 - treatment plan to restore cardio
231007 - pulmonary health so Millie can get
231008 - back in the gym to improve fitness,
231009 - build immune system and emotional
231010 - stability; no discussion of team care
231011 - collaboration with heart specialist
231012 - to assess enlarged right
231013 - ventricle......................... 061110, ref SDS 47 GR3J
231015 - ..
231016 - 4. Millie again requests examination
231017 - by heart specialist on severity of
231018 - heart disorder Cor Pulmonale enlarged
231019 - right ventricle to get clearance on
231020 - working out in gym to restore
231021 - physical fitness and strengthen
231022 - immune system..................... 061208, ref SDS 51 HZ39
231024 - ..
231025 - 5. Millie letter confirms request for
231026 - examination by heart specialist to
231027 - advise on resume working out in the
231028 - gym to restore physical fitness and
231029 - relieve pulmonary embolism symptoms
231030 - chronic fatigue, shortness of
231031 - breath and heavy
231032 - chest............................. 061218, ref SDS 54 VC61
231034 - ..
231035 - 6. Millie letter notifies Kaiser of
231036 - continuing symptoms pulmonary embolism
231037 - and heart disorder Cor Pulmonale from
231038 - enlarged right ventricle; proposes
231039 - examination by heart
231040 - specialist........................ 061227, ref SDS 57 645I
231042 - ..
231043 - 7. Doctor advises Cor Pulmanele heart
231044 - disorder most likely caused by
231045 - pulmonary embolism; proposes waiting
231046 - to take action until advanced
231047 - complictions of edema in lower
231048 - extremities occur; does not comment
231049 - on relieving current symptoms;
231050 - does not comment on request for
231051 - examination by heart
231052 - specialist........................ 061228, ref SDS 0 JU7L
231054 - ..
231055 - 8. Millie may have suffered permanent
231056 - lung damage that prevents regaining
231057 - prior levels of exercise in the gym
231058 - to restore fitness that strengthens
231059 - immune system to resist
231060 - cancer............................ 070105, ref SDS 61 WR4J
231062 - ..
231063 - 9. Kaiser reviewed findings CT test on
231064 - 071210 showing mildly enlarged heart;
231065 - doctor feels no referral to cardio
231066 - pulmonary specialist required to
231067 - investigate until treatable
231068 - symptoms become
231069 - evident........................... 080118, ref SDS 63 HP9T
231071 - ..
231072 - 10. Millie letter to Kaiser with copy to
231073 - UCSF requests comment from medical
231074 - team, including notice to coagulation
231075 - control case management on CT test
231076 - findings possibly related to
231077 - increasing pulmonary
231078 - embolism.......................... 080226, ref SDS 64 S14Y
231079 -
231080 -
231081 -
231082 -
231083 -
231084 -
2311 -
SUBJECTS
Drug Trials Kaiser Collaborating Due Diligence Submits Report to UCS
4003 -
400401 - ..
400402 - Kaiser Review Patient Status Recovery 5 Year Case History
400403 - UCSF 2 Drug Trial Proposals Kaiser Collaborating to Help Millie
400404 - Drug Trials Kaiser Collaborating UCSF Consider Proposals Help Millie
400405 -
400406 - Follow up ref SDS 57 086H, ref SDS 56 086H.
400407 -
400408 - On 061226 Millie received a letter from the doctor dated 061220, and
400409 - notifying about Kaiser's progress contacting UCSF on Millie
400410 - participating in clinical drug trials. ref SDS 56 YE6N Yesterday, on
400411 - 061227, Millie requested copies of communication between Kaiser and
400412 - UCSF on collaborating about clinical trials in Millie's case.
400413 - ref SDS 57 KO3P
400415 - ..
400416 - Millie received ref DRT 2 0001 from the primary care physician
400417 - saying...
400418 -
400419 - 1. This is the e-mail that I have sent to Dr. Rugo at UCSF. This
400420 - should also serve as a "5 year review" with an opinion from a
400421 - breast expert. ref DRT 2 0001
400423 - ..
400424 - The doctor explains transmitting language below submitted to UCSF, as
400425 - requested yesterday on 061227. ref SDS 57 KO3P
400426 -
400427 - [On 070315 Millie submitted to primary care physician at
400428 - Kaiser progress report on recovering from IBC 3rd relapse
400429 - with treatment starting on 070201 clinical study cetuximab
400430 - at UCSF. ref SDS 62 VP5N
400432 - ..
400433 - The doctor errs submitting this summary for a "5 year review," which
400434 - Millie requested on 061218 asking for Tumor Board support, ref SDS 54
400435 - MN9L, followed up yesterday in another letter, ref SDS 57 6L3F, and
400436 - confirming discussion with the doctor during the meeting at Kaiser on
400437 - 061208. ref SDS 51 P69G
400439 - ..
400440 - Kaiser's letter today is a good summary of patient history helping an
400441 - executive quickly grasp the gist of the case. This is different from
400442 - reviewing details of patient history with citations for accuracy to
400443 - find opportunities and constraints on treatment. Kaiser's letter to
400444 - UCSF presents no "opinion," nor ideas, options, analysis nor criteria
400445 - for making choices, because the purpose is to qualify for a drug
400446 - trial. Whereas, a 5 year review would include prospects for drug
400447 - trials as part of patient treatment options.
400449 - ..
400450 - The purpose of Tumor Board review provides fresh eyes, with no history
400451 - of involvement in the case, and diverse experience and expertise for
400452 - quality control to complement and support work by the primary care
400453 - physician, reported on 061218. ref SDS 55 FW9K A follow up letter to
400454 - the doctor on 061227 noted limitations of Tumor Boards, and suggests
400455 - abandoning the effort, if Kaiser cannot accomplish these goals at this
400456 - time. ref SDS 57 DY5Q
400457 -
400458 - [On 070105 meeting primary care physician did not present
400459 - strategy and options. ref SDS 61 XB5H
400461 - ..
400462 - Letter from primary care physician continues...
400463 -
400464 - 2. The patient is a 70 year old woman with a history of poorly
400465 - differentiated infiltrating ductal cancer of left breast (2 cm,
400466 - 4/4 LN's positive with infiltration into the perinodal fat) who
400467 - was initially diagnosed 03/04/02. She had lumpectomy, but
400468 - refused completion ALND, followed by AC X's 2 only because of
400469 - rising CA 15-3 and clinical progression to inflammatory breast
400470 - cancer, Taxotere X's 6 and then XRT. She unfortunately had
400471 - biopsy proven recurrent disease noted in cervical LN's
400472 - 03/03/04.
400474 - ..
400475 - "XRT" may be expressing treatments with radiation therapy. The
400476 - sequence can be clarified to report that after radiation during July -
400477 - September, the patient had 4 more cycles of Taxotere to complete
400478 - initial treatment on 021204. ref SDS 6 0001
400480 - ..
400481 - Saying treatment with AC was stopped because of clincial progression
400482 - to IBC, ref SDS 0 D79P, conflicts with the record on 020603 showing AC
400483 - was switched to Taxotere due to CA 15-3 rising to 117, and PET scan
400484 - test showing cancer increased in the left axillary. (see summary on
400485 - 050812. ref SDS 25 FP9N)
400486 -
400487 - [...below, for some reason the doctor does not cite patient
400488 - history of CA 15-3 demonstrating measurable disease.
400489 - ref SDS 0 D76P
400491 - ..
400492 - IBC was diagnosed in a biopsy 2 years later on 040419, and submitted
400493 - to the patient on 040517. (see case study 050812, ref SDS 25 FS6K)
400494 - Research at that time on 040517 indicated IBC is difficult to
400495 - diagnose, because the tumor is in the skin and so does not appear in
400496 - image testing, and symptoms are common to more common ailments like
400497 - reaction to radiation, fungal infections, etc. ref SDS 11 TO7L and
400498 - ref SDS 11 S65K The primary care physician at Kaiser diagnosed IBC on
400499 - 040614. ref SDS 12 6T5G
400501 - ..
400502 - Research today found article by MD Anderson Cancer Center confirming
400503 - that IBC is hard to diagnose, ref OF 1 01L6, and that mistakes are
400504 - easy to make, ref OF 1 12WU, which aligns with research on 060722
400505 - reporting pulmonary embolism is also hard to diagnose. ref SDS 37 7P9F
400506 -
400507 - [On 070101 MD Anderson report cited in case study on patient
400508 - history showing IBC disease cannot be measured by image
400509 - tests. ref SDS 59 4Q6K
400511 - ..
400512 - Letter from primary care physician continues...
400513 -
400514 - 3. She was placed on the EPP E2100 Trial and was treated with
400515 - Taxol and Avastin x's 7 cycles. She developed a PE while on
400516 - Avastin and she was removed from the Trial 10/21/04. She has
400517 - had multiple second opinions, including UCSF (Dr. Benz).
400519 - ..
400520 - Attribution reflects professionalism - Benz 2nd opinion for
400521 - consultation at UCSF on 041018, and received on 041117 recommended
400522 - Taxotere and capecitiabine. (see study on 050812. ref SDS 25 DJ4F)
400524 - ..
400525 - The date of 041021 was the last treatment with Taxol and bevacizumab
400526 - (Avastin). ref SDS 14 0001 However, Millie was "removed from the
400527 - trial" the day after the CT test on 041103. At that time, on 041104
400528 - Millie was scheduled to receive another cycle of Taxol and Avastin,
400529 - and was told that the CT test the day before prevented this due to
400530 - pulmonary embolism. (see case study on 050812. ref SDS 25 WJ3J)
400532 - ..
400533 - Letter from primary care physician continues...
400534 -
400535 - 4. She was then given 4 cycles of AC with no real response ending
400536 - 03/25/05. The patient then had 8 cycles of Taxotere/Xeloda
400537 - 4/15/05 through 9/16/05.
400539 - ..
400540 - It might be helpful to report there was strong response with Taxotere
400541 - and capecitiabine (Xeloda), and that surgery attempted wide mastectomy
400542 - to remove all tissue previously infected with IBC guided by trial
400543 - biopsies on 051012 to set boundaries. ref SDS 28 DG6J
400545 - ..
400546 - Letter from primary care physician continues...
400547 -
400548 - 5. This was followed by a prophylactic left mastectomy 10/21/05
400549 - which revealed no residual disease.
400551 - ..
400552 - Saying "...revealed no residual disease," likely relates to biopsy for
400553 - mastectomy on 051021, and reported on 051027. ref SDS 29 U05M
400555 - ..
400556 - Letter from primary care physician continues...
400557 -
400558 - 6. Then her left chest lesions reappeared and began expanding.
400560 - ..
400561 - It might be helpful to report the date IBC recurrence on 060623.
400562 - ref SDS 32 025H
400564 - ..
400565 - Letter from primary care physician continues...
400566 -
400567 - 7. The patient was restarted on Taxotere/Xeloda for 7 cycles
400568 - 07/21/06 through 12/01/06.
400570 - ..
400571 - 8. Her only measurable disease are the lesions on her chest wall.
400573 - ..
400574 - The doctor explains in para 2, above, that rising CA 15-3 signaled
400575 - rising measurable disease that led to switching treatments.
400576 - ref SDS 0 D79P
400578 - ..
400579 - Doctor Benz 2nd opinion received on 060929 cited requirements for
400580 - measureable disease for Millie to qualify for 2 clinical drug trials.
400581 - ref SDS 42 UI9K
400583 - ..
400584 - Since IBC does not register well with image testing, per research
400585 - above, ref SDS 0 XP5K, IBC spreading from left to right breast is new
400586 - and significant advance of measurable disease, reported on 061208.
400587 - ref SDS 51 025H
400588 -
400589 - [...below, letter to Kaiser notes IBC spreading from left
400590 - to right breast may meet requirements for measurable
400591 - disease. ref SDS 0 T66Y
400593 - ..
400594 - [On 061230 doctor does not cite IBC lesions nor spread from
400595 - left to right breast answering UCSF question on measureable
400596 - disease. ref SDS 58 PO3V
400598 - ..
400599 - During the meeting at UCSF on 060821 Doctor Benz discussed biopsy to
400600 - establish measurable disease. ref SDS 40 6Q6O
400602 - ..
400603 - Letter from primary care physician continues...
400604 -
400605 - 9. MRI brain 07/08/06 was negative. CT 9/30/06 only showed
400606 - recurrence of PE. PET scan 12/27/06 showed some equivocal
400607 - chest wall activity.
400609 - ..
400610 - Seems like good news that recent PET/CT scan on 061227 shows no
400611 - distant metastasis, and no regional lymphadenopathy.
400613 - ..
400614 - Letter from primary care physician continues...
400615 -
400616 - 10. She is now interested in whether she qualifies for any clinical
400617 - trials; cetuximub alone versus cetuximub plus carboplatinum or
400618 - Abraxane with lapatinib?
400620 - ..
400621 - Benz 2nd opinion states Millie qualifies for 2 drug trials at UCSF,
400622 - reviewed on 060929. ref SDS 42 UI9K
400624 - ..
400625 - Letter from primary care physician continues...
400626 -
400627 - 11. She otherwise will proceed with Navelbine or Gemzar.
400628 -
400629 -
400630 -
400631 -
400632 -
4007 -
SUBJECTS
PET/CT Test 061227 Report Requested Measurable Disease Spread Left t
4403 -
4404 - 2111
440501 - ..
440502 - Measurable Disease IBC Spreads from Left to Right Breast
440503 - PET/CT Test Requested Measurable Disease Spread Left to Right Breast
440504 -
440505 - Millie submitted ref DIT 1 0001 thanking the doctor for filing a
440506 - report on qualifying to participate in drug trials.
440507 -
440508 - 1. Thanks very much for your letter to UCSF submitted today with
440509 - your letter to me, and as requested in my letter yesterday.
440510 - ref SDS 57 KO3P
440512 - ..
440513 - 2. This is a good summary of a complex case. Benz did not
440514 - indicate in his letter what constitutes "measurable" disease.
440515 - A "curbside" observation suggests spread of IBC from left to
440516 - the right breast is a major progression of disease, and
440517 - supported by rising CA 15-3, which might meet UCSF
440518 - requirements.
440520 - ..
440521 - Kaiser can supplement initial explanation to UCSF defining measurable
440522 - disease for IBC, which typically does not register in image tests like
440523 - PET and CT scans, noted in the record on 040517, ref SDS 11 S65H, and
440524 - supported today with paper published by MD Anderson, per above,
440525 - ref SDS 0 XP5K; therefore, report of rash progressing from left to
440526 - right breast demonstrates measurable disease, per above. ref SDS 0
440527 - D76P
440529 - ..
440530 - [On 061230 doctor does not cite IBC lesions nor spread from
440531 - left to right breast answering UCSF question on measureable
440532 - disease. ref SDS 58 PO3V
440534 - ..
440535 - Letter to primary care physician continues...
440536 -
440537 - 3. Rugo can dig it out if she has time, but it can be helpful to
440538 - cite Benz opinion letter on the 060821 consultation where he
440539 - expressly states I qualify for 2 trials, once measurable
440540 - disease is established.
440542 - ..
440543 - 4. Sounds like the PET/CT results from yesterday are available.
440545 - ..
440546 - 5. When time permits, please submit the full report. Will be
440547 - interesting to see if they performed comparisons you requested,
440548 - and if so, results on esophagitis, PE, enlarged right
440549 - ventricle, and areas being tracked for distant metastasis.
440550 -
440551 - [On 070102 received report from Kaiser for PET/CT test on
440552 - 061227. ref SDS 60 FV5J
440554 - ..
440555 - 6. Thanks again for timely support.
440556 -
440557 -
440558 -
440559 -
440560 -
440561 -
440562 -
440563 -
4406 -