CONTACTS 

SUBJECTS
Meeting the doctor Agenda Progress Beginning 6th Treatment Cycle   04

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 43 0000. ref SDS 39 0000.
040502 -
040503 - Patient cleared for next cycle on the Avastin trial.  Diagnostics seem
040504 - stable with CA 15-3 slightly above normal.  Clinical examination today
040505 - shows continued reduced symptoms, including redness of left breast;
040506 - the doctor credited favorable response to treatment for IBC,
040507 - ref SDS 0 6T5G, which leads toward decision on surgery that poses a
040508 - difficult dilemma.  Side effects have worsened without evident cause
040509 - discernable from testing, which increases the dilemma the doctor
040510 - has presented. ref SDS 0 RZ4I the doctor was asked today to make a
040511 - referral for a 2nd opinion to get expert advice on IBC, and verify
040512 - treatment plan in light of patient history. ref SDS 0 AW6M
040513 -
040514 -
040515 -
040516 -
040517 -
040518 -
040520 -  ..
0406 -
0407 -
0408 - Discussion
0409 -
040901 - Agenda Progress Review Begin 6th Cycle Avastin Trial & Taxol
040902 -
040903 - Follow up ref SDS 43 RO5I, ref SDS 39 RO5I.
040904 -
040905 - The meeting today was regularly scheduled for starting the 6th cycle
040906 - of the protocol on the Avastin drug trial.  The meeting was held after
040907 - getting treatment today in order to accomodate the doctor's schedule,
040908 - ref SDS 45 0001, and follows up the meeting on 040812 starting the 5th
040909 - cycle of the trial. ref SDS 43 RO5I
040911 -  ..
040912 - Millie created an agenda on the marking board...
040913 -
040914 -        CA 15-3 Diagnostic Test.................... ref SDS 0 GJ5M
040915 -        Coughing, heavy chest, breathing
040916 -        issues continue............................ ref SDS 0 RZ4I
040917 -        Lumps under arm............................ ref SDS 0 MW8J
040918 -        Lumps in neck smaller...................... ref SDS 0 8R6M
040919 -        Breast redness mastectomy
040920 -        surgery schedule........................... ref SDS 0 6T5G
040921 -        Cancer Center 2nd opinion.................. ref SDS 0 AW6M
040922 -
040923 -
040924 -
040925 -
040926 -
040927 -
040928 -
040929 -
0410 -

SUBJECTS
CA 15-3 Cancer Marker 44 Rises from 42 Reversing Previous Fall Indic

1203 -
120401 -  ..
120402 - Recovery Progress CA 15-3 Cancer Marker Drops from 55 to 47
120403 - CA 15-3 Cancer Marker Continues Strong Rise Conflicting with Pathology
120404 -
120405 - Follow up ref SDS 43 087J, ref SDS 39 087J.
120407 -  ..
120408 - CA 15-3 blood test has two (2) reports since the meeting on 040812.
120409 - The test on 040825 increased from 42 to 47, then fell back to 44 in
120410 - the test yesterday on 040908....
120412 -           ..
120413 -          040908......... 44 H............. 040909, ref SDS 0 087J
120414 -          040825......... 47 H............. 040909, ref SDS 0 087J
120415 -          040811......... 42 H............. 040812, ref SDS 43 087J
120416 -          040728......... 43 H............. 040729, ref SDS 41 2N5J
120417 -          040712......... 54 H............. 040713, ref SDS 40 2N5J
120418 -          040628......... 47 H............. 040713, ref SDS 39 087J
120419 -          040614......... 55 H............. 040615, ref SDS 38 PX6X
120420 -          040517......... 78 H............. 040601, ref SDS 34 2N5J
120421 -          040311......... 70 H............. 040318, ref SDS 24 SM6M
120422 -          040205......... 60 H............. 040211, ref SDS 22 SM6M
120423 -          031201......... 62 H............. 031205, ref SDS 21 SM6M
120424 -          030912......... 66 H............. 030915, ref SDS 20 SM6M
120425 -          030708......... 68 H............. 030710, ref SDS 19 SM6M
120426 -          030503......... 54 H............. 030508, ref SDS 18 SM6M
120427 -          030403......... 45 H............. 030508, ref SDS 18 SM6M
120428 -          030215......... 46 H............. 030220, ref SDS 17 5E6L
120429 -          030106......... 37 H............. 030109, ref SDS 16 SM6M
120430 -          021202......... 41 H?............ 021204, ref SDS 14 SP5G
120431 -          021111......... 36 H?............ 021113, ref SDS 13 Y65I
120432 -          021023......... 33 H?............ 021023, ref SDS 12 SQ5I
120433 -          020930......... 33 H?..29........ 021002, ref SDS 11 SQ5I
120434 -          020917......... 36 H?............ 020924, ref SDS 10 SQ5I
120435 -          020717......... 59 H?............ 020726, ref SDS 9 YN5K
120436 -          020629......... 75 H ............ 020705, ref SDS 8 UX6I
120437 -          020608........  67 H ............ 020614, ref SDS 7 0001
120438 -          020603........ 108 H ............ 020607, ref SDS 6 X67F
120439 -          020511........ 117 H ............ 020603, ref SDS 5 PJ4J
120440 -          020419......... 81 H ............ 020430, ref SDS 4 7N5H
120441 -          020321......... 85 H ............ 020405, ref SDS 3 6T8K
120442 -
120443 -
120444 -
120446 -  ..
1205 -
1206 -
1207 - Analysis
1208 -
120801 - CA 15-3 Cancer Marker Drop Attributed to Treatment
120802 -
120803 - Follow up ref SDS 43 GJ5M, ref SDS 39 GJ5M.
120804 -
120805 - The doctor noted that CA 15-3 overall role slightly to 44 from the
120806 - last meeting on 040812, and so still remains slightly above the range
120807 - for normal of 39. ref SDS 0 087J  On 040812 the doctor related that
120808 - dropping CA 15-3 into the normal range would complement other testing
120809 - which currently shows favorable response to the Avastin and Taxol
120810 - trial protocol, so that these treatments can end within a few months,
120811 - at least for awhile after symptoms of IBC are eliminated, so that
120812 - surgery can be considered, and to reduce side effects. ref SDS 43 K47I
120813 -
120814 -
120815 -
120816 -
1209 -

SUBJECTS
Breathing Problem Continuous Coughing for Several Hours Heavy Chest

1903 -
190401 -  ..
190402 - Dilemma Kaiser Cannot Test to Diagnose and Treat Breathing Problems
190403 - Coughing Bleeding Nose Heavy Chest Breathing Low Energy Worsening
190404 -
190405 - Follow up ref SDS 43 RZ4I, ref SDS 39 RZ4I.
190406 -
190407 - Millie explained coughing has continued the past few months.  Medicine
190408 - has reduced sore throat problem, as discussed on 040812, ref SDS 43
190409 - RZ4I, but heavy chest seems worse.  Walking up a single flight of
190410 - stairs now requires pausing for breath, despite being in good
190411 - condition from heavy exercise, until about July when side effects of
190412 - chemotherapy causing low energy, reported beginning on 040517,
190413 - ref SDS 31 RZ4I, accumulated beyond endurance.
190415 -  ..
190416 - The doctor said the CT tests do not show any problems that explain the
190417 - cause of side effects.  He feels there is nothing more than can be
190418 - done to relieve problematic side effects of treatment in the clinical
190419 - trial.
190421 -  ..
190422 - The doctor further confirmed discusson on 040812 presenting a
190423 - difficult dilemma that the patient must continue to endure problematic
190424 - side effects of coughing, difficult breathing, and loss of energy in
190425 - order to treat IBC using the Avastin trial protocol. ref SDS 43 K47I
190426 -
190427 -     [On 061020 disclosure that CT tests for pulmonary embolism are
190428 -     more rigorous than testing for cancer, and so must be ordered
190429 -     expressly to look for pulmonary embolism, ref SDS 56 EX6J, which
190430 -     was finally done on 041103, and reported on 041104 finding
190431 -     pulmonary embolism. ref SDS 49 RZ4I
190433 -  ..
190434 - The doctor noted that the last CT test taken on 040710, received
190435 - on 040811, and discussed during a meeting on 040812, does not show any
190436 - further cancer.  He confirmed today prior understandings on 040812,
190437 - ref SDS 43 LQ5M, that clinical examination shows prior swelled lymph
190438 - nodes are no longer perceptible as lumps in the neck, per below,
190439 - ref SDS 0 8R6M, and the long standing lump under the arm has reduced
190440 - significantly. ref SDS 0 MW8J
190441 -
190442 -     [...below Millie reports plans for 2nd opinion to assist Kaiser
190443 -     evaluate rising side effects that are not explained by testing.
190444 -     ref SDS 0 AW6M
190446 -      ..
190447 -     [On 041018 Doctor Benz at UCSF recommended further testing to
190448 -     avoid pulmonary embolism from treatment with bevacizumab and
190449 -     Taxotere. ref SDS 48 LX96
190451 -  ..
190452 - Millie asked about a PET scan test to determine the cause of
190453 - persistant breathing problems, chest pains, and coughing?  She noted
190454 - that PET scan testing found cancer under her left arm that led to
190455 - changing treatments on 020603. ref SDS 5 0001  Later, a PET scan on
190456 - 021218 identified symptoms of IBC, which were overlooked until this
190457 - year on 040517. ref SDS 31 N23J  Possibly, PET scan testing would
190458 - likewise identify the current problems.
190460 -  ..
190461 - The doctor said PET scan diagnostics would not help diagnose problems
190462 - of low energy, caughing, shortness of breath, heavy chest, etc. as
190463 - discussed on 040812, ref SDS 43 4I6I  The objective remains to get CA
190464 - 15-3 into the normal range for a period of months. ref SDS 43 CT9J
190466 -  ..
190467 - This presents a dilemma of symptoms without any apparent cause nor
190468 - means to investigate.  Kaiser's procedures call for 2nd opinion to
190469 - support primary care efforts, reviewed on 990625, ref SDS 1 455N, and
190470 - discussed further below. ref SDS 0 AW6M
190471 -
190472 -    [On 041104 dilemma resolved when CT test shows pulmonary emoboli
190473 -    (blood clots) attributed to Avastin chemotherapy treatment
190474 -    reported to cause death in some patients, and may have caused
190475 -    coughing, heavy chest, and shortness of breath, forced patient to
190476 -    end treatment with Avastin; presents new dilemma because leaving
190477 -    the Taxol and Avastin trial conflicts with requirement for
190478 -    continuous treatment to avoid symptoms of IBC to increase, and
190479 -    which had decreased under Taxol and Avastin. ref SDS 49 N43I
190481 -     ..
190482 -    [On 051007 doctor ended Coumadin treatments for Millie diagnosed
190483 -    with IBC and scheduled for mastectomy surgery, based on Kaiser's
190484 -    policy to treat patients for life who are also diagnosed with
190485 -    cancer and pulmonary emboli. ref SDS 51 XN7K
190487 -     ..
190488 -    [On 060722 oldest son reports doctors performed tests and found
190489 -    genetic cause of blood clots that will require continuing
190490 -    treatment. ref SDS 52 3D9T
190492 -     ..
190493 -    [On 061002 Millie diagnosed with recurrence pulmonary emboli;
190494 -    requires treatment again with Lovenox to relieve blood clots, then
190495 -    continuing treatment with Coumadin to prevent recurrence.
190496 -    ref SDS 55 JK7J
190497 -
190498 -
190499 -
190500 -
190501 -
190502 -
190503 -
190504 -
190505 -
1906 -

SUBJECTS
Meeting with Doctor about Lump in left breast and Under Left Arm Cau
Swelling Left Side Under Left Arm Likely Caused by Draining Lymph No
Symptom New Lump Under Arms where Cancer Surgery Performed on 020312
Pea-like Cluster and Firmness Indicates Cancerous Lumps Not Present
Arm Lump Swelled Lymph Nodes Under Left Arm Seem Bigger Again Testin
Lumps Under Arm Swelled Lymph Nodes Symptom Inflammatory Breast Canc
Lumps Under Left Arm Smaller Demonstrate Favorable Response to Treat
Lumps Under Left Arm Smaller Demonstrate Favorable Response to Treat
Lumps Under Left Arm Smaller Demonstrate Favorable Response to Treat

2611 -
261201 -  ..
261202 - Lumps Under Arm Seem Less Severe Today
261203 -
261204 - Follow up ref SDS 43 MW8J, ref SDS 39 MW8J.
261205 -
261206 - The doctor examined the lump under the left arm today, and
261207 - commented that the lump continues to get smaller, showing response to
261208 - treatment, consistent with the CT test on 040710, and reviewed with
261209 - the doctor last month on 040812. ref SDS 43 MW8J
261210 -
261211 -
261212 -
261213 -
261214 -
2613 -

SUBJECTS
Lumps Neck Nearly Gone Clinical Examination Doctor Confirms No Other

3203 -
320401 -  ..
320402 - Lumps in Neck Seem Less Severe Today
320403 -
320404 - Follow up ref SDS 43 8R6M, ref SDS 39 8R6M.
320405 -
320406 - The doctor examined the neck today, and concurred with Millie's
320407 - report last month on 040812 that lumps, which were prominent on
320408 - 040211, and led to diagnosis of recurrance on 040318, are now nearly
320409 - gone, showing favorable response to treatment. ref SDS 43 8R6M
320410 -
320411 -
320412 -
320413 -
320414 -
320415 -
320416 -
320417 -
320418 -
3205 -

SUBJECTS
Redness Returns to Left Breast Diagnosed as Cellulitus Treated with
Breast Softer Change May Indicate Recovery from Trauma of Surgery
Diagnosis Changed from Cellulitus to Radiation Reaction Treated with
Cancer Treatment Delayed Cellulitus Diagnosed Treated with Antibioti
Breast Redness Returns to Left Breast Diagnosed as Cellulitus Treate
Breast Redness Diagnosis Changed from Cellulitus to Radiation Reacti
Biopsy Pathology Report Diagnosed Inflammatory Breast Cancer Submitt
Pathology Report on Biopsy Diagnosed Inflammatory Breast Cancer Subm
Inflammatory Breast Cancer Rare 1% of Cases Aggressive Spreads Quick
Treatment Chemotherapy Matsectomy Surgery Radiation Initially Reduce
Treatment Chemotherapy Masectomy Radiation How Inflammatory Breast C
Redness Inflammation Left Breast IBC Greatly Reduced Clinical Examin

5114 -
511501 -  ..
511502 - Inflammatory Breast Cancer (IBC) Diagnosed Based on Pathology Report
511503 - Redness Breast Seems Less Severe; Skin Seems Softer after Treatments
511504 -
511505 - Follow up ref SDS 43 6T5G, ref SDS 39 6T5G.
511506 -
511507 - The doctor examined the left breast and commented there is much
511508 - less redness than he observed when this condition was last examined on
511509 - 040614, ref SDS 37 735H, concurring with Millie's report last month on
511510 - 040812. ref SDS 43 6T5G
511512 -  ..
511513 - The doctor seemed pleased citing all positive signs of improvement
511514 - and stability from favorable response to Avastin Taxol chemotherapy
511515 - treatments....
511516 -
511517 -        Steady reduction in the redness of
511518 -        the left breast infected
511519 -        with IBC...................................... ref SDS 0 6T5G
511521 -         ..
511522 -        Lumps in the neck nearly
511523 -        imperceptible................................. ref SDS 0 8R6M
511525 -         ..
511526 -        Lump under the arm smaller.................... ref SDS 0 MW8J
511528 -         ..
511529 -        CT testing shows size of
511530 -        cancer reducing to below
511531 -        detectable levels......................040812, ref SDS 43 T761
511533 -         ..
511534 -        CA 15-3 flat for months near
511535 -        normal........................................ ref SDS 0 087J
511536 -
511537 -
511538 -
511539 -
511540 -
511541 -
511542 -
5116 -

SUBJECTS
2nd Opinion Patient History Conflicting Tests Delimmas Errors Side A

6903 -
690401 -  ..
690402 - 2nd Opinion Verify Scope of Problem and Treatment Planning
690403 -
690404 - Follow up ref SDS 43 T75L, ref SDS 37 AW6M.
690405 -
690406 - Millie related plans to get a 2nd opinion in the next few weeks on
690407 - resolving the dilemma of rising side effects from treatment with
690408 - bevacizumab and Taxotere, per above, ref SDS 0 RZ4I  Kaiser presented
690409 - another dilemma on 040614, ref SDS 37 JK8L, and again last month on
690410 - 040812, ref SDS 43 T75L, in relation to diagnosis and treatment for
690411 - IBC, as recommended by the doctor on 040318, ref SDS 24 AW6M, and
690412 - citing Kaiser's practice for the primary care physician to consult
690413 - other doctors for backup on diagnostic analysis and treatment
690414 - planning, reported on 020726. ref SDS 9 RQ9F
690416 -  ..
690417 - On 040614 the doctor recommended waiting to get a 2nd opinion until
690418 - there is experience participating in the Avastin and Taxol trial
690419 - protocol. ref SDS 37 K96O  There are now five (5) months of
690420 - experience.  The doctor can make a referral based on Kaiser's
690421 - obligation to provide professional care through the insurance policy,
690422 - and that patient history in this case has been problematic, which
690423 - requires suppelmental review for adjusting treatment plans, based on
690424 - case studies, reported on 040517. ref SDS 31 VM6K
690425 -
690426 -     [On 041002 planning for 2nd opinion implemented, submitted letters
690427 -     to the Cancer Center at Stanford Medical Center, and to the Cancer
690428 -     Center at UCSF Medical Center. ref SDS 46 0001
690430 -      ..
690431 -     [On 041018 Doctor Benz at UCSF recommended further testing to
690432 -     avoid pulmonary embolism from treatment with bevacizumab and
690433 -     Taxotere. ref SDS 48 LX96
690435 -  ..
690436 - The doctor confirmed that getting a 2nd opinion is appropriate in
690437 - this case to verify diagnosis and treatment planning.  He said that
690438 - since a 2nd opinion costs only $500, this is a prudent expense.  On
690439 - 040318, the doctor explained his understanding that 2nd opinions
690440 - cost about $600. ref SDS 24 HC6O
690442 -  ..
690443 - The doctor said today that, in his role as the director of oncology
690444 - for hospitals in Kaiser's Diablo Region, he regularly approves
690445 - referrals for 2nd opinions.  He feels that Kaiser's policies prevent
690446 - approval in this case, because IBC is a common condition treated by
690447 - the Department, as he reported previously on 040614. ref SDS 37 NN3L
690449 -  ..
690450 - The doctor further seemed to indicate that even if Kaiser refuses to
690451 - make a referral as unnecessary overkill, Kaiser pays the cost for for
690452 - 2nd opinions on self-referral by the patient, when Kaiser subsequently
690453 - implements recommendations presented in outside opinions, as
690454 - reasonable and necessary for patient care.
690456 -  ..
690457 - Since Millie has suffered dramatic changes in her diagnosis and
690458 - prognosis due to difficulties assessing symptoms and testing the past
690459 - 2 years, and since she has symptoms of pulmonary embolism that are not
690460 - being treated, Millie asked the doctor to take steps for Kaiser to pay
690461 - for the costs of referral in accordance with terms of insurance
690462 - coverage calling for professional care, and to mitigate damages from
690463 - medical mistakes reported by the doctor on 040504. ref SDS 30 WI8F
690464 -
690465 -     [On 041002 research shows Kaiser's obligation to obtain a 2nd
690466 -     opinion. ref SDS 46 6K9H
690468 -      ..
690469 -     [On 041005 since Millie's symptoms of pulmonary embolism are
690470 -     worse, since Kaiser diagnoses worsening cough, nose bleed, and
690471 -     shortness of breath is caused by poor fitness from lack of
690472 -     exercise due fatigue from side effects of chemotherapy, and since
690473 -     Kaiser failed to order 2nd opinion and a Tumor Board, Millier
690474 -     ordered a 2nd opinion to assist the medical team. ref SDS 47 RZ4I
690476 -      ..
690477 -     [On 041104 dilemma side effects bevacizumab (Avastin) treatment
690478 -     resolved; CT test shows pulmonary emoboli (blood clots) attributed
690479 -     to Avastin chemotherapy treatment reported to cause death in some
690480 -     patients, and may have caused coughing, heavy chest, and shortness
690481 -     of breath, forced patient to end treatment with Avastin; presents
690482 -     new dilemma because leaving the Taxol and Avastin trial conflicts
690483 -     with requirement for continuous treatment to avoid symptoms of IBC
690484 -     to increase, and which had decreased under Taxol and Avastin.
690485 -     ref SDS 49 N43I
690487 -      ..
690488 -     [On 050727 surgeon reported seeing one case like Millie's maybe 5
690489 -     years ago, because IBC is a very rare form of cancer that strikes
690490 -     less than 1% of patients who get breast cancer. ref SDS 50 QJ3Q
690492 -      ..
690493 -     [On 060809 advice nurse recommends getting 2nd opinion right
690494 -     away on treatment, ref SDS 54 3J4O, because IBC is a rare,
690495 -     aggressive disease that goes through the patient like a hot
690496 -     knife through butter, reported earlier on 060807. ref SDS 53
690497 -     JR9Y
690499 -      ..
690500 -     [On 060809 advice nurse reports Kaiser sends patients for 2nd
690501 -     opinion when the doctor does not feel confident. ref SDS 54 T75I
690503 -  ..
690504 - The patient's case history, summarized and linked to relevant details,
690505 - is set out in the record on 040517, ref SDS 31 VM6K, and was submitted
690506 - to Kaiser on 040610. ref SDS 36 OG8O  Patient history requires
690507 - referral for additional input to help resolve difficult dilemmas
690508 - presented on 040812, ref SDS 43 K47I, and because the IBC issue was
690509 - not presented to the Tumor Board for oversight and guidance, reported
690510 - on 040517, ref SDS 31 8K5M, further because the doctor has not
690511 - reviewed patient history, due to computer problems and time
690512 - limitations, reported on 040614, ref SDS 37 S79G, and recommends
690513 - against further review by Kaiser's Tumor Board, reported on 040812.
690514 - ref SDS 43 FV6O
690515 -
690516 -
690517 -
690518 -
690519 -
690520 -
690521 -
690522 -
690523 -
690524 -
690525 -
6906 -