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: June 14, 2004 11:30 AM Monday; Rod Welch

Meeting at Kaiser diagnose inflammatory breast cancer IBC treatment plan.

1...Summary/Objective
2...Agenda Progress Review Begin 3rd Cycle Avastin Trial & Taxol
3...Recovery Progress CA 15-3 Cancer Marker Rises from 60 to 70
4...CA 15-3 Cancer Marker Continues Strong Rise Consistent with Pathology
5...CA 15-3 Rising Cancer Marker Begins to Slow Down
6...Balance Chemotherapy Immune System Effective Aided by Patient Fitness
7...Age and Chemotherapy Reduce Blood Counts Degrade Immune System
8...Chemotherapy Drug Levels Must Be Maintained for Effective Treatment
9...Blood Counts Flexitility Good Health Permits Effective Chemotherapy
10...Bone Scan Test Results Note Available Today
11...Breathing Difficult, Heavy Chest, Coughing Side Effects Avastin
12...Coughing Several Hours Side Effect Soar Throat of Taxol and Avastin
13...Lumps Under Arm Not Enough Time for Examination
14...Painful Neck Problem No Longer Occurring
15...Lumps in Neck Lymph Node Swelling Seem Less Severe Today
16...Diagnosis Changed to IBC Based on Pathology Report from Biopsy
17...Inflammatory Breast Cancer (IBC) Diagnosed Based on Pathology Report
18...Redness Breast Seems Less Severe; Skin Seems Softer after Treatments
19...Secondary IBC Very Serious Stave IV Cancer Survival Prospects Dim
20...Stage IV IBC Diagnosis Most Severe Cancer Requires Prompt Treatment
21...Inflammatory Breast Cancer Needs Prompt Treatment Automatic Stage IV
....Breast Cancer is Breast Cancer IBC Treated Same as All Stage IV
....IBC Treated Same as Other Cancer Breast Cancer is Breast Cancer
....How is Inflammatory Breast Cancer Treated - Chemotherapy Mastectomy
....Chemotherapy High Dose Treatment for Inflammatory Breast Cancer
....Dilemma Surgery or Avastin Trial Difficult Decision for Patient
....Patient Difficult Decision on Surgery or Continue Avastin Trial
....Chemotherapy Surgery and Radiation Common Treatment Regimen
....Mastectomy Preceded by Chemotherapy for Inflammatory Breast Cancer
....PET Scan Test to Evaluate Scope of Problem Not Supported
....High Dose Chemotherapy being Researched to Treat IBC
....Cyclosphamide, Doxorubicin and Fluorouracil Radiation Treatments
22...Medical Intelligence Connecting Dots in Time for Effective Treatment
23...Case Study Redness Left Breast Connecting Dots in Time for Treatment
24...Issues Arising from Research on IBC and Record in Millie's Case
25...Work Plan to Aggressively Treat IBC
26...Lessons Learned to Improve Medical Practice and Research
27...Defer 2nd Opinion Until After Experience with Avastin Trial
28...2nd Opinion Verify Scope of Problem Doctor Recommends Defer Action
29...Tumor Board Report Requires Support Showing What was Reviewed
30...CA 15-3 Key Criteria Patient Progress Reviewed by Tumor Board
31...Surgery Proposed by Tumor Board to Remove Lymph Nodes If Necessary
32...Tumor Board Follow Up Review Address New Information
33...Cancer Neck Only Evidence of CT Scan Shows Distant Metastasis
34...CT Scan Shows Evidence of Distant Metastasis Carcinoma Only in the N
35...Distant Metastasis Cancer Neck Only Evidence of CT Scan Shows
36...Port Catheter Working Well Solves Prior Problems Using Needles

ACTION ITEMS.................. Click here to comment!

1...Work Plan to perform following tasks...

CONTACTS 

SUBJECTS
Agenda Meeting the doctor Progress Beginning 4th Treatment Cycle   07

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 35 0000. ref SDS 30 0000.
040502 -
040503 - Patient cleared for next cycle of Avastin trial.  Rising CA 15-3
040504 - indicates increasing cancer activity. ref SDS 0 087J  The doctor
040505 - confirmed Kaiser has diagnosed IBC, ref SDS 0 6T5G, and that Kaiser
040506 - policy requires treatment for stage IV cancer. ref SDS 0 6M9H
040507 - Examination today seems to indicate favorable response to the first
040508 - two (2) treatment cycles of taxol and Avastin. ref SDS 0 735H  The
040509 - doctor related the patient will face a dilemma on whether to have
040510 - surgery when CT and other testing shows cancer has receded, which is
040511 - commonly prescribed, or to continue with chemotherapy in the Avastin
040512 - trial. ref SDS 0 JK8L  Kaiser's computer was down today, so planning
040513 - developed on 040517 could not be reviewed. ref SDS 0 S79G
040515 -      ..
040516 -     [On 040713 meeting starting 4th cycle Avastin trial shows steady
040517 -     improvement; side effects having impact. ref SDS 44 0001
040519 -      ..
040520 -     [On 040909 patient reports increased symptoms of heaviness in the
040521 -     chest, shortness of breath, excessive coughing, which medical team
040522 -     cannot explain because CT tests show no problems. ref SDS 46
040523 -     RZ4I
040525 -      ..
040526 -     [On 041104 dilemma resolved when CT test shows pulomnary emoboli
040527 -     (blood clots) causing coughing, heaviness in the chest, and
040528 -     shortness of breath, which requires leaving the Taxol and Avastin
040529 -     trial protocol, because pulmonary emobolism is a side effect that
040530 -     has caused death of some patients; as a result patient no longer
040531 -     receives treatment for several months, causing symptoms of IBC to
040532 -     increase. ref SDS 48 N43I
040534 -      ..
040535 -     [On 041230 doctor observes increased symptoms of IBC. ref SDS 53
040536 -     CW53
040538 -      ..
040539 -     [On 050104 patient begins chemotherapy again to treat increasing
040540 -     symptoms of IBC. ref SDS 54 0001
040541 -
040542 -
040543 -
040544 -
040545 -
040547 -  ..
0406 -
0407 -
0408 - Discussion
0409 -
040901 - Agenda Progress Review Begin 3rd Cycle Avastin Trial & Taxol
040902 -
040903 - Follow up ref SDS 35 SM6M.
040904 -
040905 - The meeting today was regularly scheduled for starting the 3rd cycle
040906 - of the protocol on the Avastin drug trial, and follows up the meeting
040907 - on 040517 starting the 2nd cycle of the trial.
040909 -  ..
040910 - The doctor was about 30 minutes late to the meeting scheduled for 1130
040911 - -- he arrived about 1200.  The doctor indicated having received the
040912 - letter dated 040610, ref DIP 1 0001, citing the record of the prior
040913 - meeting on 040517, ref SDS 35 0001, and as shown in the record on
040914 - 040610. ref SDS 41 OG8O
040916 -  ..
040917 - The doctor said his computer would not open links in the letter on
040918 - 040610, so he did not see the list of issues to review with links to
040919 - context in the record on 040517. ref SDS 35 S79G
040921 -  ..
040922 - The doctor indicated a preference not to receive legible communication
040923 - via email from patients, because this takes too much time from
040924 - examining patients, managing the department, and collaborating with
040925 - Kaiser professional staff via email.  This aligns with reporting on
040926 - 020402 by the nurse, who explained that the doctor does not have time
040927 - for feedback from patients that requires reading. ref SDS 3 V168  The
040928 - radiologist at Mt Diablo made the same point on 020708. ref SDS 10
040929 - EY9N  Previously, on 990625 a primary care physician at the Kaiser
040930 - Park Shadelands Clinic expressed a similar preference work by
040931 - conversation in order to save time. ref SDS 1 1978
040932 -
040933 -     [On 041130 the doctor objected to request for a written plan to
040934 -     analyse complex treatment scenarios and confirm discussion in a
040935 -     meeting on changing the course of treatment to address major
040936 -     change in the patient profile, ref SDS 49 YR8F, and commented that
040937 -     a written plan is unnecessary overkill because the case is too
040938 -     simple. ref SDS 49 763L
040940 -      ..
040941 -     [On 041202 Doctor Parsley used email for timely, accurate
040942 -     coordination between patient, primary care physician and surgeon
040943 -     on follow up for emergency treatment at Kaiser that found simple,
040944 -     punch biopsy wound failed to heal over 8 months. ref SDS 51 426W
040946 -      ..
040947 -     [On 050819 pharmacist handwritten record of patient report on side
040948 -     effects illegible, incomplete. ref SDS 58 A15O
040950 -      ..
040951 -     [On 051121 Kaiser email support for doctor/patient partnership
040952 -     communication. ref SDS 61 V25O
040954 -  ..
040955 - The doctor advised that questions about treatment, including subjects
040956 - to discuss with the doctor can be called into the advice nurse for
040957 - Oncology.
040959 -  ..
040960 - We therefore worked today from the following list written on the
040961 - marking board in the examination room....
040963 -         ..
040964 -        Lumps in neck smaller...................... ref SDS 0 8R6M
040965 -        Coughing past few days
040966 -        causes sore throat......................... ref SDS 0 RZ4I
040967 -        CA 15-3 Diagnostic Test.................... ref SDS 0 GJ5M
040968 -        Breast redness, biopsy mastectomy
040969 -        surgery schedule........................... ref SDS 0 6T5G
040970 -        Lumps under arm clinical examination....... ref SDS 0 MW8J
040971 -        Bone Scan results.......................... ref SDS 0 L34N
040972 -        Inflammatory breast cancer diagnosis.......
040973 -        Tumor Board report......................... ref SDS 0 MB7F
040974 -        Cancer Center.............................. ref SDS 0
040975 -        PET Scan test..............................
040976 -        Disability sick leave...................... ref SDS 0 AK3J
040977 -
040978 -
040979 -
040980 -
040981 -
040982 -
0410 -

SUBJECTS
CA 15-3 70 Rises from 60 Reversing Trend of Past 6 Months
CA 15-3 Cancer Marker 78 Rises from 70 Indicating Potential Cancer A

0704 -
070501 -  ..
070502 - Recovery Progress CA 15-3 Cancer Marker Rises from 60 to 70
070503 - CA 15-3 Cancer Marker Continues Strong Rise Consistent with Pathology
070504 -
070505 - Follow up ref SDS 35 087J, ref SDS 30 SM6M.
070507 -  ..
070508 - There were no new blood tests reported today on CA 15-3.
070510 -           ..
070511 -          040517......... 78 H............. 040601, ref SDS 38 2N5J
070512 -          040311......... 70 H............. 040211, ref SDS 27 SM6M
070513 -          040205......... 60 H............. 040211, ref SDS 25 SM6M
070514 -          031201......... 62 H............. 031205, ref SDS 24 SM6M
070515 -          030912......... 66 H............. 030913, ref SDS 23 SM6M
070516 -          030708......... 68 H............. 030710, ref SDS 22 SM6M
070517 -          030503......... 54 H............. 030508, ref SDS 20 SM6M
070518 -          030403......... 45 H............. 030403, ref SDS 20 SM6M
070519 -          030220......... 46 H............. 030220, ref SDS 19 5E6L
070520 -          030106......... 37 H............. 030109, ref SDS 18 SM6M
070521 -          021202......... 41 H?............ 021204, ref SDS 16 SP5G
070522 -          021102......... 36 H?............ 021113, ref SDS 15 Y65I
070523 -          021023......... 33 H?............ 021023, ref SDS 14 SQ5I
070524 -          020930......... 33 H?..29........ 021002, ref SDS 13 SQ5I
070525 -          020917......... 36 H?............ 020924, ref SDS 12 SQ5I
070526 -          020717......... 59 H?............ 020726, ref SDS 11 YN5K
070527 -          020629......... 75 H ............ 020705, ref SDS 9 UX6I
070528 -          020608........  67 H ............ 020614, ref SDS 8 0001
070529 -          020603........ 108 H ............ 020607, ref SDS 7 X67F
070530 -          020511........ 117 H ............ 020603, ref SDS 6 PJ4J
070531 -          020419......... 81 H ............ 020430, ref SDS 5 7N5H
070532 -          020321......... 85 H ............ 020405, ref SDS 4 6T8K
070533 -
070534 -
070535 -
070537 -  ..
0706 -
0707 -
0708 - Analysis
0709 -
070901 - CA 15-3 Rising Cancer Marker Begins to Slow Down
070902 -
070903 - Follow up ref SDS 35 GJ5M, ref SDS 30 GJ5M.
070904 -
070905 - The doctor briefly reviewed CA 15-3 test results reported in the
070906 - record on 040601, ref SDS 38 2N5J, and showing another major jump from
070907 - 70 to 78, although less than the jump from 60 to 70 reported
070908 - previously on 040318. ref SDS 27 SM6M
070910 -  ..
070911 - The doctor ordered another CA 15-3 to determine a trend, discussed in
070912 - the letter on 040610. ref SDS 41 OH9P
070914 -         ..
070915 -        [On 040615 CA 15-3 drops significantly to 55 from 78 a month
070916 -        ago, reversing the trend the past 4 months. ref SDS 43 PX6X
070918 -  ..
070919 - Millie had the requistion forms, already signed by Rosalie for the
070920 - doctor.
070922 -  ..
070923 - After the meeting, we walked around the corner into the Chemotherapy
070924 - clinic, and blood was drawn.
070925 -
070926 -
070927 -
0710 -

SUBJECTS
Blood Counts Low Cause Reduced Dosage Chemotherapy to Treat IBC and

1503 -
150401 -  ..
150402 - Balance Chemotherapy Immune System Effective Aided by Patient Fitness
150403 - Age and Chemotherapy Reduce Blood Counts Degrade Immune System
150404 - Chemotherapy Drug Levels Must Be Maintained for Effective Treatment
150405 - Blood Counts Flexitility Good Health Permits Effective Chemotherapy
150406 -
150407 - Follow up ref SDS 21 JP7G.
150408 -
150409 - Millie asked the doctor why low blood counts result in getting a
150410 - reduced dose of chemotherapy treatment, reported on 040525?
150411 - ref SDS 37 4N5M
150413 -  ..
150414 - The doctor presented prior analysis on 030606 that bone marrow creates
150415 - new blood.  He related again today that exercise stimulates the
150416 - natural process of bone marrow replensihing the blood supply.  Cancer
150417 - treatments and aging both slow blood creation, and also reduce energy
150418 - and interest in exercise. ref SDS 21 JP7G  Lack of exercise compounds
150419 - decline of blood counts.  Since Millie is 68, her blood counts are
150420 - consistently low.  The week between treatments on the Avastin drug
150421 - trial is not quite enough time for bone marrow to replenish the blood
150422 - into the normal range, causing consistently low counts.  The doctor
150423 - advised that approving treatment with counts below Kaiser's standing
150424 - criteria is required to maintain a consistent level of chemotherapy in
150425 - the body which is essential to make treatment effective for recovering
150426 - from cancer (see again on 030606, ref SDS 21 JP7G
150427 -
150428 -     [On 050609 article reports study found exercise repairs some of
150429 -     the cumulative damage chemotherapy causes to the immune system;
150430 -     this prolongs effectiveness of chemotherapy treatment to aid
150431 -     recovery from breast cancer, ref SDS 56 F88M; quality of life from
150432 -     strength and range of motion are obvious benefits of exercise.
150433 -     ref SDS 56 F93X
150435 -      ..
150436 -     [On 060721 Kaiser implemented policy to maintain dose level of
150437 -     chemotherapy for effective cancer treatment. ref SDS 62 KP6J
150439 -      ..
150440 -     [On 060810 treatment denied ANC blood count slightly below Kaiser
150441 -     criteria for safe treatment while CA 15-3 cancer marker rising,
150442 -     ref SDS 67 5K4F; case study shows Millie's good health from life
150443 -     style of exercise permits aggressive treatment despite low blood
150444 -     counts. ref SDS 67 HV45
150446 -  ..
150447 - Doctors constantly balance maintaining blood counts lowered by
150448 - chemotherapy treatments, per above, ref SDS 0 6T7F, against
150449 - maintaining dose levels of treatment high enough for the patient to
150450 - recover from cancer.
150452 -      ..
150453 -     [On 070301 example ANC low blood counts; cetuximab clinical study
150454 -     weekly treatments not enough time for bone marrow to replenish
150455 -     blood, wicked problem because cancer spreading requires increasing
150456 -     chemotherapy which reduces blood counts, weakening the immune
150457 -     system, which in turn increases risk of contracting other
150458 -     infectious diseases. ref SDS 69 D24M
150460 -  ..
150461 - One strategy is to lower the dose when blood counts are low, as
150462 - occurred for Millie on 040525. ref SDS 37 4N5M  When blood counts
150463 - rise, chemotherapy can be increased to increase strength of treatment
150464 - for recovering from cancer.
150465 -
150466 -     [On 040615 Kaiser increased chemotherapy to full dose because
150467 -     blood counts increased. ref SDS 43 6W5L
150469 -      ..
150470 -     [On 080418 Millie getting treatment at UCSF on referral from
150471 -     Kaiser; doctor proposes discussing lowering dose of chemotherapy
150472 -     Carboplatin according to blood counts. ref SDS 71 598J
150474 -      ..
150475 -     [On 080423 Millie proposes lowering and increasing chemotherapy
150476 -     treatments at UCSF as occurred at Kaiser in order to optimize
150477 -     treatment for cancer. ref SDS 72 OY7S
150479 -      ..
150480 -     [On 080423 UCSF notifies Milllie that when dose of Carboplatin is
150481 -     reduced due to low blood counts, treatment cannot later be
150482 -     increased when blood counts improve. ref SDS 72 I49N
150484 -      ..
150485 -     [On 080423 Millie notifies UCSF to maintain higher dose to
150486 -     optimize recovery, and to treat low blood counts with Neupogen and
150487 -     skipping treatments. ref SDS 72 TY6Y
150489 -  ..
150490 - Delaying and skipping treatment is another strategy that allows more
150491 - time for bone marrow to restore blood counts.  This risks causing
150492 - cancer to cascade out of control.  At some point, however, the normal
150493 - aging process lowers blood counts.  Other diseases overwhelm a
150494 - weakened immune system, causing patients to expire.
150496 -  ..
150497 - Neupogen treatment is a third strategy that directly increases blood
150498 - counts the patient can get full dose of chemotherapy.  Neupogen has
150499 - side effects that further complicate balancing strategies for treating
150500 - cancer.
150501 -
150502 -     [On 040615 doctor orders treatment with Neupogen and Procrit to
150503 -     increase blood counts, but treatments cancelled, because blood
150504 -     counts increased without treatment, and so enabled Millie to get
150505 -     full dose of chemotherapy. ref SDS 43 EU3G
150507 -  ..
150508 - Millie's general good health, strength, and lifestyle of vigorous
150509 - exercise, cited by the doctor on 030606, ref SDS 21 NE57, and again on
150510 - 030710, ref SDS 22 FZ4N, give the doctor a window of flexibility in
150511 - applying blood count criteria in this case, so that chemotherapy
150512 - treatments can be maintained at a high level of effectiveness even
150513 - with advancing age.
150515 -      ..
150516 -     [On 060810 case study Millie has generally received full dose of
150517 -     treatment with low blood counts, and has occassionally been
150518 -     treated with Neupogen, and sometimes delayed treatments.
150519 -     ref SDS 67 HV45
150521 -      ..
150522 -     [On 061110 doctor prescribes Procrit to treat low hemoblobin
150523 -     despite patient history of low hemoglobin for several years and
150524 -     patient did not require treatment with Procrit. ref SDS 68 DT7O
150526 -      ..
150527 -     [On 070607 Millie Cellulitis recurrence from exercise to
150528 -     maintain fitness and strengthen immune system to resist
150529 -     cancer. ref SDS 70 6A7J
150531 -  ..
150532 - Research on 040517 shows that one regimine for treating IBC is a
150533 - "high" dose of chemotherapy. ref SDS 35 JK94  The doctor indicated
150534 - that dosage of treatments will rise, as blood counts rise.
150535 -
150536 -     [On 040615 blood counts rise to normal, ref SDS 43 Q659, so dosage
150537 -     on Taxol chemotherapy increased to normal. ref SDS 43 4N5M
150538 -
150539 -
150540 -
150541 -
150542 -
150543 -
1506 -

SUBJECTS
Bone Scan Schedule for 2nd Opinion Review by Tumor Board

1603 -
160401 -  ..
160402 - Bone Scan Test Results Note Available Today
160403 -
160404 - Follow up ref SDS 35 L34N, ref SDS 32 0000.
160405 -
160406 - Background on bone scan test is reported on 040517. ref SDS 35 L34N
160408 -  ..
160409 - During the meeting today, results of the test were not submitted nor
160410 - discussed.
160412 -  ..
160413 - Pending issue for Tumor Board to report on impact of bone scan test.
160414 - ref SDS 35 HN4N
160415 -
160416 -
160417 -
160418 -
160419 -
160420 -
1605 -

SUBJECTS
Breathing Problem Continuous Coughing for Several Hours Reaction to

2003 -
200401 -  ..
200402 - Breathing Difficult, Heavy Chest, Coughing Side Effects Avastin
200403 - Coughing Several Hours Side Effect Soar Throat of Taxol and Avastin
200404 -
200405 - Follow up ref SDS 35 RZ4I.
200406 -
200407 - Millie confirmed the report in the letter to the doctor on 040610 and
200408 - added new information today explaining that in the past few days from
200409 - about Wednesday of last week, 040609, there has been a continuing
200410 - coughing problem with heaviness in the chest, ref SDS 41 OH5Y, similar
200411 - to the report on 040517, but the problem of difficulty breathing,
200412 - reported on 040517, has not occurred again, ref SDS 35 RZ4I, except
200413 - when climbing stairs, and similar activity, e.g., walking hills at
200414 - Lafayette park.  Continual cough to clear her throat, first reported
200415 - on 040607, ref SDS 39 MP6J, creates problems of interrupted sleep and
200416 - a sore throat, even choking when lying down asleep.
200418 -      ..
200419 -     [On 040713 cough medicine reduces problem of sore throat.
200420 -     ref SDS 44 RZ4I
200422 -      ..
200423 -     [On 040812 Genentec, manufacturer of Avastin announces increased
200424 -     risk for pulminary emboli (blood clots); Millie reports family
200425 -     history of blood clot issues, and asks about report in connection
200426 -     with symptoms of coughing, difficult breathing, heaviness in
200427 -     chest; doctor interprets increased risk on Avastin trial related
200428 -     to personal history of blood clots, and so no change in treatment
200429 -     was prescribed. ref SDS 45 RZ4I
200431 -  ..
200432 - Millie asked if coughing could be caused by medication she is taking
200433 - for her eyes.
200435 -  ..
200436 - The doctor looked on Kaiser's computer and found the prescription
200437 - for the eye medication Millie is taking.  He indicated that this does
200438 - not seem to have ingredients that would normally be expected to cause
200439 - coughing and breathing problems.
200441 -  ..
200442 - The doctor left the examination room for a few mintues to consult with
200443 - the Avastin trial protocol nurse.  When he returned, the doctor
200444 - advised that Rosalie indicated coughing is a side effect of Avastin,
200445 - and that fatigue, and shortness of breath occur from loss of fitness
200446 - caused by chemotherapy.
200448 -  ..
200449 - This issue was reviewed previously on 040517. ref SDS 35 ML8J
200451 -      ..
200452 -     [On 041104 coughing and heaviness in chest diagnosed due to blood
200453 -     clot (pulminary emboli) reported in CT test, and which is a side
200454 -     effect of Avastin (Bevacizumab) listed in the record on 040517,
200455 -     ref SDS 35 ML8J; Millie removed from Avastin trial; all cancer
200456 -     treatments suspended. ref SDS 48 N43I
200458 -  ..
200459 - On 040402, Rosalie explained side effects of Avastin, ref SDS 28 HS9X,
200460 - based on the consent document received from Kaiser. ref OF 2 0001  The
200461 - consent does not list "coughing" as a side effect for Taxol,
200462 - ref OF 2 UK88, nor for Avastin (bevacizumab). ref OF 2 CE39  Sore
200463 - throat is listed for Taxol, ref OF 2 UK5T, and there is a side effect
200464 - from bevacizumab described as "inflammation of the mucous lining of
200465 - the mouth and/or throat," which may suggest an inference the doctor
200466 - drew from discussions with Rosalie. ref OF 2 CE76
200468 -  ..
200469 - Millie's condition seems like the mucous lining problem, or one of the
200470 - side effecst of Avastin that may cause fluid to seep into the lungs,
200471 - per listing on 040517, ref SDS 35 ML8J, in that the cough seems to be
200472 - trying to clear the throat.
200474 -  ..
200475 - The doctor prescribed a cough medication to reduce the effects of
200476 - a sore throat.
200478 -  ..
200479 - After the meeting with the doctor, Millie filled the prescription
200480 - at the pharmacy on the 2nd floor across from the Oncology department.
200481 -
200483 -  ..
2005 -
2006 -
2007 - 1951
2008 -
200801 - This evening she went to sleep early, but began coughing again.
200802 -
200803 - For some reason Mil is reluctant to take the medicine.
200804 -
200806 -  ..
2009 -
2010 -
2011 - 2103
2012 -
201201 - Millie took cough medicine and this seemed to solve problem, so she
201202 - could sleep.  She woke several times during the night coughing.  Took
201203 - more cough medicine and this cleared the problem.
201204 -
201205 -
201206 -
201207 -
201208 -
201209 -
201210 -
2013 -

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
Lumps Under Arm Not Enough Time for Examination

2707 -
270801 -  ..
270802 - Lumps Under Arm Not Enough Time for Examination
270803 -
270804 - Follow up ref SDS 35 MW8J, ref SDS 27 HC7F.
270805 -
270806 - The doctor advised he was unable to review the record on 040517
270807 - showing the case study on the lump under the left arm, ref SDS 35
270808 - OW3I, which was submitted on 040610 to guide examination and
270809 - discussion today. ref SDS 41 RU6H
270811 -  ..
270812 - There was no discussion nor examination of the lump under the arm,
270813 - because the meeting was cut short due to a late start, per above,
270814 - ref SDS 0 O53O, and cosiderable time was devoted by the doctor
270815 - discussing Kaiser's experience treating IBC, ref SDS 0 AW6M, and
270816 - explainng why the doctor feels the IBC issue should not be
270817 - resubmitted to the Tumor Board, ref SDS 0 4R59, and why this is not a
270818 - good time to get a 2nd opinion from a Cancer Center. ref SDS 0 K96O
270820 -      ..
270821 -     [On 040713 doctor examines lump under left arm and reports that
270822 -     swelling seems significantly reduced, indicating favorable
270823 -     response to chemotherapy treatment. ref SDS 44 RW9H
270824 -
270825 -
270826 -
270827 -
270828 -
2709 -

SUBJECTS
Lumps Neck Seem to Have Become Softer Smaller Suggest Possible Favor
Painful Neck Problem No Longer Occurring

3804 -
380501 -  ..
380502 - Painful Neck Problem No Longer Occurring
380503 - Lumps in Neck Lymph Node Swelling Seem Less Severe Today
380504 -
380505 - Follow up ref SDS 35 8R6M, ref SDS 30 8R6M.
380507 -  ..
380508 - There have been no more episodes of pain and stiffness in the neck, as
380509 - occurred previously, reported on 040517, and explained at that time as
380510 - possible evidence of effective treatment. ref SDS 35 8R6M
380512 -  ..
380513 - The doctor examined Millie's neck by pressing his fingers in the
380514 - areas were lumps were previously swelled, and today noted that
380515 - swelling is further reduced from the examination on 040517.
380516 - ref SDS 36 3R6O
380518 -  ..
380519 - This aligns with Millie's report on 040601, ref SDS 38 DJ9N, and in
380520 - the letter to the doctor last week on 040610 reporting evident
380521 - reduced swelling of lymph nodes in the neck. ref SDS 41 OH7Y
380522 -
380523 -
380524 -
380525 -
380526 -
380527 -
3806 -

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
Treatment Chemotherapy Matsectomy Surgery Radiation Initially Reduce
Treatment Chemotherapy Masectomy Radiation How Inflammatory Breast C
Inflammatory Breast Cancer (IBC) Official Diagnosis the doctor B   51
Redness Breast Seems Less Severe Skin Seems Softer after Treatments

5814 -
581501 -  ..
581502 - Diagnosis Changed to IBC Based on Pathology Report from Biopsy
581503 - Inflammatory Breast Cancer (IBC) Diagnosed Based on Pathology Report
581504 - Redness Breast Seems Less Severe; Skin Seems Softer after Treatments
581505 -
581506 - Follow up ref SDS 35 6T5G, ref SDS 30 IM6J.
581507 -
581508 - The doctor advised that he has diagnosed Millie with Inflammatory
581509 - Breast Cancer (IBC), based on the pathology report describing findings
581510 - from a biopsy taken by the surgeon on 040419; this confirms
581511 - understandings shown in the record of the meeting on 040517, when the
581512 - doctor submitted the report, and did not discuss findings on pathology
581513 - nor any content in the report at that time, similar to the prior
581514 - meeting on 040504. ref SDS 35 6T5G
581516 -  ..
581517 - The doctor noted that the pathology report handed to the patient
581518 - on 040517 meets Kaiser requirements for notifying the patient of
581519 - diagnosis, and that verbal notice today of IBC accomplishes the action
581520 - item for issuing a formal diagnosis, listed in the record on 040517.
581521 - ref SDS 35 X36K
581523 -  ..
581524 - The doctor examined Millie's breast, and indicated the degree of
581525 - redness seems to have receded still further, improving conditions
581526 - reported during the meeting on 040517, ref SDS 35 WD8N, and confirming
581527 - the report to the doctor in the letter on 040610. ref SDS 41 OH8R
581529 -  ..
581530 - The doctor indicated that significant reduction of swelling in
581531 - lymph nodes in the neck, per above, ref SDS 0 RK58, and continued
581532 - improvement in reducing redness and softer skin for the left breast
581533 - indicate positive response to treatment after two cycles of
581534 - chemotherapy using Taxol and Avastin on the trial protocol.
581536 -  ..
581537 - We need targets for rate of recovery based on Kaiser's experience
581538 - treating IBC, and industry history, in accordance with Jeanne's
581539 - experience reported on 040610. ref SDS 40 FJ5W
581540 -
581541 -     [On 040909 patient reports increased symptoms of heaviness in the
581542 -     chest, shortness of breath, excessive coughing, which medical team
581543 -     cannot explain because CT testing shows no problems. ref SDS 46
581544 -     RZ4I
581546 -      ..
581547 -     [On 041019 Stanford Medical Center confirms findings at UCSF
581548 -     medical center that symptoms of IBC nearly gone; recommends
581549 -     continued treatment. ref SDS 47 TX96
581551 -      ..
581552 -     [On 041104 dilemma resolved by CT test showing pulomnary emoboli
581553 -     (blood clots) is the cause of coughing, heaviness in the chest,
581554 -     and shortness of breath, which requires leaving the Taxol and
581555 -     Avastin trial protocol, because pulmonary emobolism is a side
581556 -     effect that has caused death of some patients; as a result patient
581557 -     taken off treatment. ref SDS 48 N43I
581559 -      ..
581560 -     [On 041230 doctor observes increased symptoms of IBC after several
581561 -     months of no treatments. ref SDS 53 CW53
581563 -      ..
581564 -     [On 050104 patient begins chemotherapy again to treat IBC.
581565 -     ref SDS 54 0001
581566 -
581567 -
581568 -
581569 -
581570 -
581571 -
581572 -
581573 -
5816 -

SUBJECTS
Stage IV Secondary IBC Diagnosis Most Severe Cancer Requires Prompt

7503 -
750401 -  ..
750402 - Secondary IBC Very Serious Stave IV Cancer Survival Prospects Dim
750403 - Stage IV IBC Diagnosis Most Severe Cancer Requires Prompt Treatment
750404 - Inflammatory Breast Cancer Needs Prompt Treatment Automatic Stage IV
750405 -
750406 - Follow up ref SDS 35 6M9H.
750407 -
750408 - During the meeting today, the doctor supported research in the
750409 - record on 040517 that found Inflammatory Breast Cancer (IBC) is a rare
750410 - form of rapidly advancing breast cancer that usually accounts for less
750411 - than 1% of all breast cancer cases.  Inflammatory breast cancer is a
750412 - highly invasive form of cancer that progresses quickly and should be
750413 - differentiated by physicians from other forms of advanced cancer with
750414 - similar characteristics.  Inflammatory breast cancer causes the breast
750415 - to appear swollen and inflamed. ref SDS 35 6M9H
750417 -  ..
750418 - The doctor said that when IBC is diagnosed de novo, Kaiser's policy is
750419 - to designate the patient with stage III cancer.  In Millie's case,
750420 - where IBC has been diagnosed following recurrence, Kaiser immediately
750421 - treats the patient with "secondary IBC" for stage IV cancer.  The
750422 - doctor advised that recurrence from lumps in the neck establish
750423 - metastatic cancer, previously reported on 040318. ref SDS 27 8R6M
750425 -  ..
750426 - The doctor explained that stage IV cancer diagnosed today based on
750427 - discovering IBC from the biopsy on 040419, ref SDS 31 1572, and
750428 - submitted to Millie last month on 040517, ref SDS 35 RH5V, changes
750429 - survival prospects originally presented as 5 years 78% reported for
750430 - stage IIA on 020321. ref SDS 2 6Q4U
750432 -  ..
750433 - Millie asked what this means?
750435 -  ..
750436 - The doctor said patients with stage IV cancer should not be making
750437 - long term plans, and should get their affairs in order for life
750438 - prospects of months, rather than years.  He explained that survival
750439 - prospects are dim because IBC is one of the most aggressive diseases,
750440 - especially for secondary diagnosis, in Millie's case.  This aligns
750441 - with research reported on 040517, after receiving the biopsy report
750442 - from the doctor. ref SDS 35 TO7L  IBC is described as the most lethal
750443 - breast cancer, ref SDS 35 L19H, with longevity of only 18 months.
750444 - ref SDS 35 0141
750445 -
750446 -        [On 050212 Millie treated in Emergency Room Department for
750447 -        infection from cat bite; attending physician worried that this
750448 -        can cause death for stage IV cancer patients; recommends Millie
750449 -        get her affairs in order. ref SDS 55 Z56F
750451 -         ..
750452 -        [On 060807 advice nurse recommends Millie get 2nd opinion right
750453 -        away for treatment, ref SDS 66 3J4O, because IBC is a rare,
750454 -        very aggressive cancer that goes through the patient like a hot
750455 -        knife through butter. ref SDS 64 7Q8H
750457 -  ..
750458 - Millie recalled discussion at Lafayette reservoir on 040607, when she
750459 - learned about the biopsy report, and that longevity is only 18 months,
750460 - but her symptoms were reported in the PET test on 021218. ref SDS 39
750461 - 0001
750462 -
750463 -        [On 090213 1140 case study patient advised to get affairs in
750464 -        order for life ending in months. ref SDS 73 L19H
750466 -  ..
750467 - The doctor said there may have been earlier signs of IBC that
750468 - complicate Millie's situation, noted last month when the doctor met
750469 - with Millie ad hoc in the Infusion Clinic on 040504. ref SDS 34 WI8F
750470 - Today, the doctor emphasized that new treatments are being announced
750471 - every day, so it is hard to say how IBC will progress.  The doctor
750472 - said that Kaiser will do everything possible to help Millie meet this
750473 - difficult challenge.
750475 -  ..
750476 - Millie asked what is likely to happen?  Will there be a lot of pain,
750477 - and for how long?
750479 -  ..
750480 - The doctor said there is a lot that can be done to make patients
750481 - comfortable and avoid pain.  The amount of time for eventual demise is
750482 - hard to estimate, but survival will be months rather than years.
750484 -  ..
750485 - Hospice care was explained for assisting patients and families deal
750486 - with terminal situations.
750487 -
750488 -        [...below, this addresses somewhat pending issue. ref SDS 0
750489 -        Q69G
750491 -         ..
750492 -        [On 050826 surgeon in Kaiser's Oakland office explains
750493 -        mastectomy surgery for patients with metastatic cancer limited
750494 -        to regional disease and no evidence of distant metastasis fits
750495 -        a curative treatment model for stage III cancer. ref SDS 59
750496 -        947O
750498 -         ..
750499 -        [On 050915 after Millie recovered from 2nd relapse of cancer in
750500 -        2004, Doctor Johnson explains immediate mastectomy surgery
750501 -        essential for survival. ref SDS 60 5T5N
750502 -
750503 -
750504 -
750505 -
750506 -
7506 -

SUBJECTS
Breast Cancer is Breast Cancer IBC Treated Same as All Stage IV

7703 -
770401 -     ..
770402 -    Breast Cancer is Breast Cancer IBC Treated Same as All Stage IV
770403 -    IBC Treated Same as Other Cancer Breast Cancer is Breast Cancer
770404 -    How is Inflammatory Breast Cancer Treated - Chemotherapy Mastectomy
770405 -    Chemotherapy High Dose Treatment for Inflammatory Breast Cancer
770406 -
770407 -    Follow up ref SDS 35 YM3M.
770408 -
770409 -    Millie asked what does the change from stage IIA to stage IV mean
770410 -    for changing treatment?
770412 -     ..
770413 -    The doctor seemed to indicate that Kaiser recognizes IBC is an
770414 -    aggressive cancer, confirming understandings in the letter to
770415 -    Kaiser on 040610, ref SDS 41 OH4S, citing research on 040517, and,
770416 -    also, discussed above on changing from stage IIA to stage IV
770417 -    cancer, which requires the most aggressive level of treatment.
770418 -    ref SDS 0 6M9H
770420 -     ..
770421 -    The doctor advised that Kaiser does not support chemotherapy
770422 -    targeted for IBC that is different from treatment patients get when
770423 -    diagnosed with breast cancer.  The doctor seemed exasperated noting
770424 -    the complexity of the human body and many types of cancer that are
770425 -    difficult to explain.  The doctor said something to the effect
770426 -    that...
770427 -
770428 -        "Breast cancer is breast cancer.  Treatment for IBC is the same
770429 -        as treatment without IBC, there's no difference!"
770430 -
770431 -    ...which aligns with comments on 040504, when the doctor met with
770432 -    Millie during treatments in the infusion clinic, and indicated that
770433 -    error diagnosing IBC as cellulitus, reaction to radiation, and
770434 -    infection, does not change treatment. ref SDS 34 MG8G
770436 -     ..
770437 -    Possibly, the doctor was referring to the meeting on 040318 when he
770438 -    seemed to diagnose distant metastasis, ref SDS 27 8R6M, as grounds
770439 -    for entering the Avastin trial protocol, because the pathology
770440 -    report identified swelled lymph nodes in the neck were infected
770441 -    with cancer. ref SDS 27 PU6M  Maybe treatment for distant
770442 -    metastasis from breast cancer is the same for all breast cancers,
770443 -    including IBC.  Since the doctor was 30 minutes late to the
770444 -    meeting, and since he did not have time to review the record to
770445 -    prepare for the meeting, and since Millie was late for treatments,
770446 -    at the infusion clinic, there wasn't enough time for clarification
770447 -    today.
770448 -
770449 -
770450 -
770451 -
770452 -
770453 -
770454 -
7705 -

SUBJECTS
Surgery Dilemma Patient Difficult Decision Surgery or Continue Avast
Dilemma Patient Difficult Decision Surgery or Continue Avastin Trial
PET Scan Test to Evaluate Scope of Problem Not Supported by Doctor J

8205 -
820601 -     ..
820602 -    Dilemma Surgery or Avastin Trial Difficult Decision for Patient
820603 -    Patient Difficult Decision on Surgery or Continue Avastin Trial
820604 -    Chemotherapy Surgery and Radiation Common Treatment Regimen
820605 -    Mastectomy Preceded by Chemotherapy for Inflammatory Breast Cancer
820606 -
820607 -    Follow up ref SDS 35 JK8L.
820608 -
820609 -    The doctor indicated that Kaiser supports industry practice to
820610 -    treat IBC with chemotherapy and surgery.  The doctor cited the
820611 -    "minutes" of the Tumor Board hearing that mention in a general way
820612 -    consideration of radiation after chemotherapy, which the doctor
820613 -    discussed during the meeting on 040517. ref SDS 35 F78G
820615 -     ..
820616 -    The doctor advised today that Millie will have a difficult decision
820617 -    in a few months.  He explained that after redness is reduced from
820618 -    the breast, so it can be treated with surgery, Millie will have to
820619 -    decide whether to have surgery to remove the breast, discussed with
820620 -    the surgeon on 040429, and with the doctor on 040504, ref SDS 34
820621 -    MG8G, or not to have surgery in order to continue in the Avastin
820622 -    trial.  The doctor feels surgery will require Millie to end
820623 -    participation in the trial.  This presents a dilemma of ending
820624 -    treatment having favorable effects in order to undergo standard
820625 -    practice treating IBC with surgery to remove tissue that has proven
820626 -    susceptible to cancer, but which may or may not be effective,
820627 -    reported on 040517. ref SDS 35 YM3M,
820628 -
820629 -        [On 040812 doctor indicates patients with IBC need not
820630 -        necessarily be treated with surgery for IBC. ref SDS 45 T75L
820632 -         ..
820633 -        [On 040909 patient complains of increased symptoms of heaviness
820634 -        in the chest, shortness of breath, excessive coughing, which
820635 -        medical team cannot explain because CT testing shows no
820636 -        problems. ref SDS 46 RZ4I
820638 -         ..
820639 -        [On 041104 dilemma resolved when CT test shows pulmonary
820640 -        emoboli (blood clots) attributed to Avastin chemotherapy
820641 -        treatment reported to cause death in some patients, and may
820642 -        have caused coughing, heavy chest, and shortness of breath,
820643 -        forced patient to end treatment with Avastin; presents new
820644 -        dilemma because leaving the Taxol and Avastin trial conflicts
820645 -        with requirement for continuous treatment to avoid symptoms of
820646 -        IBC to increase, and which had decreased under Taxol and
820647 -        Avastin. ref SDS 48 N43I
820649 -         ..
820650 -        [On 041210 doctor proposes surgery to treat IBC; case study
820651 -        reviews history considering surgery for Millie. ref SDS 52 ZV5J
820653 -         ..
820654 -        [On 041230 doctor observes increased symptoms of IBC.
820655 -        ref SDS 53 CW53
820657 -         ..
820658 -        [On 050104 patient begins chemotherapy again to treat
820659 -        increasing symptoms of IBC. ref SDS 54 0001
820660 -
820661 -
820663 -     ..
820664 -    PET Scan Test to Evaluate Scope of Problem Not Supported
820665 -
820666 -    The dilemma comes when CT tests show there is no evidence of cancer
820667 -    activity.  If the patient ends participation in the Avastin trial,
820668 -    and there is still cancer activity at a molecular level that cannot
820669 -    be detected by CT testing, then when physical symptoms become
820670 -    evident the patient can no longer get treatment with Avastin.  He
820671 -    said that prolonged chemotherapy treatment eventually becomes
820672 -    debilitating, shown by significant drop in energy; however, it is
820673 -    very tricky to decide when to take a holiday from treatment.
820675 -     ..
820676 -    Patient history shows PET scan tests previously identified cancer
820677 -    on 020529 overlooked by CT and other tests, reviewed during the
820678 -    meeting on 020603, ref SDS 6 0001, and so seems like a logical
820679 -    extension of diagnostics to aid treatment decisions.  On 040610 the
820680 -    patient's letter to Kaiser, ref DIP 1 RR4J, requests PET scan
820681 -    testing to discover the scope of the problem, ref SDS 41 OH9P,
820682 -    identified from new information on IBC received from the doctor
820683 -    during the meeting on 040517.
820685 -     ..
820686 -    The doctor recommended against getting a PET scan test on the
820687 -    grounds that this would duplicate CT testing already being
820688 -    performed under the protocol for the Avastin trial.
820690 -         ..
820691 -        [On 040909 patient complains of increased symptoms of heaviness
820692 -        in the chest, shortness of breath, excessive coughing, which
820693 -        medical team cannot explain because CT testing shows no
820694 -        problems. ref SDS 46 RZ4I
820696 -         ..
820697 -        [On 041104 dilemma resolved when CT test shows pulomnary
820698 -        emoboli (blood clots) causing coughing, heaviness in the chest,
820699 -        and shortness of breath, which requires leaving the Taxol and
820700 -        Avastin trial protocol, because pulmonary emobolism is a side
820701 -        effect that has caused death of some patients; as a result
820702 -        patient no longer receives treatment for several months,
820703 -        causing symptoms of IBC to increase. ref SDS 48 N43I
820704 -
820705 -
820706 -
820707 -
820708 -
8208 -

SUBJECTS
Low Dose Chemotherapy IBC Patient to Participate Avastin Trial High

8403 -
840401 -     ..
840402 -    High Dose Chemotherapy being Researched to Treat IBC
840403 -    Cyclosphamide, Doxorubicin and Fluorouracil Radiation Treatments
840404 -
840405 -    Follow up ref SDS 35 JK94.
840406 -
840407 -    Since the record was not availabe to the doctor, there was no
840408 -    discussion today of common treatments for IBC reported on 040517,
840409 -    including CAF, reported on the Internet at...
840410 -
840411 -        http://imaginis.com/breasthealth/bc_drugs.asp#Cytoxan
840412 -
840413 -    ...cyclophosphamide,
840414 -
840415 -        http://imaginis.com/breasthealth/bc_drugs.asp#Adriamycin
840416 -
840417 -    ...doxorubicin, and fluorouracil).
840419 -  ..
840420 - We discussed general understandings that a high dose of chemotherapy
840421 - is not being followed in this case.
840423 -  ..
840424 - Millie is participating in a trial of bevacizumab (rhuMab VEGF -
840425 - Avastin), that is given to the patient once a week with a low dose of
840426 - Taxol, reported on 040318, ref SDS 27 PU6M, prior to the diagnosis of
840427 - IBC today.  In addition, on 040601 the staff reported that the dose of
840428 - Taxol Millie is getting has been consistently lowered to accomodate
840429 - low blood counts, ref SDS 38 Q659, per discussion above. ref SDS 0
840430 - 6T7F
840432 -         ..
840433 -        [On 040615 the doctor prescribed Procrit and Nupigen to
840434 -        elevate Millie's blood counts and Taxol dosage was increased to
840435 -        normal. ref SDS 43 4N5M  Procrit and nupigen not administered
840436 -        today because blood counts normal. ref SDS 43 3P5O
840438 -  ..
840439 - Doctor did not discuss whether CAF is out of date - he maintained that
840440 - Taxol and Avastin is at least an equivalently aggressive, "high dose"
840441 - treatment suited for IBC.
840442 -
840443 -
840444 -
840445 -
8405 -

SUBJECTS
Prognosis Inflammatory Breast Cancer Average Survival 18 Months

8503 -
850401 -  ..
850402 - Medical Intelligence Connecting Dots in Time for Effective Treatment
850403 - Case Study Redness Left Breast Connecting Dots in Time for Treatment
850404 -
850405 - Follow up ref SDS 35 S66O.
850406 -
850407 - There was no review of case study on left breast.
850408 -
850409 -
850410 -
850411 -
8505 -

SUBJECTS
Issues Pending Verify Diagnosis IBC Review Treatment Regimen Taxol A
Treatment IBC Review Verify Regimen Taxol Avastin Trial Credentials

8704 -
870501 -  ..
870502 - Issues Arising from Research on IBC and Record in Millie's Case
870503 -
870504 - Follow up ref SDS 41 OA4P, ref SDS 35 S79G.
870505 -
870506 - On 040610 planning was submitted to the doctor to prepare for
870507 - meeting today, ref SDS 41 OA4P, on diagnosis and treatment based on
870508 - disclosures during the meeting on 040517, and subsequent research.
870509 - ref SDS 35 S79G
870511 -  ..
870512 - Today, the doctor reported his computer was down, per above, and
870513 - additionally, the doctor was 30 minutes late arriving for the meeting,
870514 - and considerable time was devoted to recommending grounds against
870515 - follow up review by the Tumor Board and getting a 2nd opinion, and so
870516 - he was not able to review pending issues...
870518 -         ..
870519 -    1.  What are implications for longevity of 18 months listed in the
870520 -        research on 040517, ref SDS 35 0141, in relation to original
870521 -        symptoms reported on 030109? ref SDS 17 KW5F, and again on
870522 -        030606? ref SDS 19 7C6W
870524 -         ..
870525 -    2.  What are implications for longevity of 18 months for
870526 -        Inflammatory Breast Cancer under the current treatment, in
870527 -        relation to typically prescribed treatments, shown in the
870528 -        research on 040517? ref SDS 35 JK94
870530 -  ..
870531 - The doctor did not disucss these issues today, except to say Millie
870532 - faces a more serious battle based on automatically changing to cancer
870533 - stage IV, and suggested she not make any long term plans, that she get
870534 - her financial affairs in order. ref SDS 0 6M9H
870536 -         ..
870537 -    3.  How does diagnosis of inflammatory carcinoma of the left breast
870538 -        (IBC), shown in the pathology report of a biopsy taken on
870539 -        040419, per above, ref SDS 35 7D6F, influence treatment in
870540 -        relation to the clinical trial for Avastin that calls for a low
870541 -        dose of Taxol chemotherapy, reported on 040318, ref SDS 27
870542 -        VJ46, which appears to conflict with a common regimen that
870543 -        calls for a high dose of chemotherapy using other drugs, shown
870544 -        by research listed above? (see pending action items)
870545 -        ref SDS 0 JK94
870547 -  ..
870548 - The doctor did not address the low dose v high dose of Taxol; per
870549 - above, he diagnosed Millie as Stage IV cancer, and seemed to indicate
870550 - this has no impact on treatment. ref SDS 0 YM3M  Also, noted above,
870551 - the dose of taxol was increased, and remedies were prescribed to
870552 - avoid giving the patient a low dose of Taxol. ref SDS 0 JK94
870554 -         ..
870555 -    4.  The research on 040517 cites advances in treatment may help to
870556 -        extend survival, ref SDS 35 0141, and in this case Millie is in
870557 -        a trial of Avastin, beginning on 040420. ref SDS 35 MP6G  Does
870558 -        this preclude trying other ways of treating inflammatory breast
870559 -        cancer, e.g., see research today? ref SDS 35 JK94
870561 -  ..
870562 - The doctor advised that Millie will have to decide whether to stay on
870563 - the Avastin trial or have surgery, per above. ref SDS 0 JK8L
870565 -         ..
870566 -    5.  What "surgery" is contemplated from the minutes of the meeting
870567 -        by the Tumor Board on 040517? ref SDS 35 F77M
870568 -
870569 -        a.  Doctor Laio discussed surgery
870570 -            to remove infected lymph nodes
870571 -            in the neck...................... 040309, ref SDS 26 Y193
870573 -             ..
870574 -        b.  Doctor Riley-Paull discussed
870575 -            mastectomy surgery, which was
870576 -            after the Tumor Board met on
870577 -            040416, so this could not have
870578 -            been in the minds of board
870579 -            members.......................... 040429, ref SDS 33 C155
870581 -  ..
870582 - Today, the doctor seemed to be arguing against surgery, and advised
870583 - that Millie will have a difficult decision in 3 to 4 months about
870584 - whether to have surgery or remain on the Avastin trial. ref SDS 0 ER9I
870586 -         ..
870587 -    6.  Is further testing required to accurately diagnose other issues
870588 -        that need analysis for prescribing treatment? ref SDS 35 SU7G
870589 -        and ref SDS 35 2F4G
870591 -  ..
870592 - Today, the doctor recommended against getting a PET scan to
870593 - evaluate the scope of distant metastatis diagnosed with stage IV
870594 - status assigned today, per above. ref SDS 0 6M9H
870595 -
870596 -
870598 -         ..
870599 -    7.  What experience treating IBC does the Oncology Department in
870600 -        Kaiser's Walnut Creek hospital have?
870601 -
870602 -           How many IBC cases have been treated in the past 5 years by
870603 -           the team at Walnut Creek?
870605 -            ..
870606 -           How many IBC cases have been treated in the past 5 years
870607 -           under the doctor's supervision as the chief of
870608 -           Hermatology/Ontology for the Diablo Service Area of Kaiser
870609 -           Permanente Medical Group, reported in the Spring 2002
870610 -           edition of Member News, reviewed on 020321? ref SDS 2 MK4J
870612 -            ..
870613 -           What treatment regimen has Kaiser adopted for IBC?
870614 -
870615 -              [...above, the doctor says breast cancer is breast
870616 -              cancer, there is no targeted treatment for IBC at Kaiser.
870617 -              ref SDS 0 KI5O
870619 -            ..
870620 -           How does this differ from the regimen found in research
870621 -           today, per above? ref SDS 35 JK94
870623 -            ..
870624 -           What results has Kaiser achieved treating IBC?
870625 -
870626 -               How many patients who contracted IBC 5 years ago are
870627 -               still surviving?
870628 -
870629 -                 [...below, the doctor does not explain Kaiser's
870630 -                 record treating IBC. ref SDS 0 AW6M
870632 -         ..
870633 -    8.  Should Kaiser consult and/or refer the patient to other
870634 -        "experts" and/or to a Cancer Center for diagnosis and targeted
870635 -        treatment plans, based on diagnosis today of IBC? see above.
870636 -        ref SDS 35 YN3L
870638 -         ..
870639 -        On 040318 the doctor cited working relationships with
870640 -        Cancer Centers at Stanford and at Cal. ref SDS 27 AW6M
870641 -
870642 -                 [...below, the doctor recommends against getting
870643 -                 2nd opinion at this time. ref SDS 0 K96O
870645 -         ..
870646 -    9.  Is the treatment currently prescribed the best course?
870647 -
870648 -        How does the current treatment of low dose of Taxol given 3
870649 -        times a week in combination with Avastin given 2 times a week,
870650 -        correlate with research today citing a treatment regimen of a
870651 -        high dose of chemothearpy? ref SDS 35 JK94
870653 -         ..
870654 -        What treatment options are available under the record in this
870655 -        case? ref SDS 35 JK6J
870657 -  ..
870658 - There was no discussion of this issue.
870660 -         ..
870661 -   10.  What criteria will be used to monitor progress?
870663 -  ..
870664 - There was no discussion of this issue.
870666 -         ..
870667 -   11.  What other steps will be tried in the event of poor progress?
870669 -  ..
870670 - There was no discussion of this issue.
870671 -
870672 -
870673 -
870674 -
8707 -

SUBJECTS
Work Plan to Treat IBC

8803 -
880401 -  ..
880402 - Work Plan to Aggressively Treat IBC
880403 -
880404 - Follow up ref SDS 35 5Q5L.
880405 -
880406 - Pending issues, listed above, ref SDS 35 S79G, can be addressed with
880407 - Work Plan to perform following tasks...
880408 -
880409 -            [On 040610 planning submitted to the doctor to prepare
880410 -            for meeting on 040614 reviewing diagnosis and treatment.
880411 -            ref SDS 41 OA4P
880412 -
880413 -    1.  Assignments.
880414 -
880415 -        Kaiser's team care practice marshal resources of doctors,
880416 -        staff, equipment and consultants to immediately address pending
880417 -        issues under the doctor's leadership. ref SDS 35 S79G
880419 -         ..
880420 -        What skills are needed and who is available with experience
880421 -        treating IBC?
880423 -         ..
880424 -        Can Tumor Board members contribute to review the record and
880425 -        perform analysis?
880427 -         ..
880428 -    2.  Verify diagnosis of IBC and metastatic cancer.
880430 -  ..
880431 - The doctor advised today that he has diagnosed IBC based on the
880432 - pathology report submitted during the meeting on 040517, per above.
880433 - ref SDS 0 6T5G
880435 -         ..
880436 -    3.  Testing with CT, PET and biopsy to determine scope of problem,
880437 -        and that positive response is or is not occurring under current
880438 -        treatment regimen using Taxol and the Avastin trial.
880440 -         ..
880441 -        There is now a history of 2 cycles.  Is this sufficient to
880442 -        assess whether a low dose of Taxol combined with the Avastin
880443 -        trial drug should be continued, or switched to treat for IBC?
880445 -  ..
880446 - The doctor feels the current CT testing is adequate to assess the
880447 - scope of metastatic cancer from recurrence due to IBC, diagnosed
880448 - today, and changing to stage IV treatment, per above. ref SDS 0 6T5G
880450 -  ..
880451 - The doctor decided against getting a PET scan to help the patient
880452 - resolve the difficult dilemma the doctor described today, per above.
880453 - ref SDS 0 ER9I
880455 -         ..
880456 -    4.  Review by Tumor Board to support doctor and patient partnership
880457 -        by addressing pending issues. ref SDS 35 S79G
880459 -         ..
880460 -        Validate diagnosis and treatment plan.
880462 -         ..
880463 -        Establish criteria for determining when to change the
880464 -        treatment.
880466 -         ..
880467 -    5.  Cancer Center review to validate treatment plan or recommend
880468 -        alternate course based on broader experience with IBC.
880469 -
880470 -
880471 -
880472 -
880473 -
880474 -
880475 -
8805 -

SUBJECTS
Lessons Learned to Improve Medical Practice and Research

8903 -
890401 -  ..
890402 - Lessons Learned to Improve Medical Practice and Research
890403 -
890404 - Follow up ref SDS 35 PW8F.
890405 -
890406 - There was no review of lessons learned reported on 040517.
890407 -
890408 -
890409 -
890410 -
890411 -
8905 -

SUBJECTS
2nd Opinion IBC Verify Scope of Problem Doctor Recommends Defer Gett

A003 -
A00401 -  ..
A00402 - Defer 2nd Opinion Until After Experience with Avastin Trial
A00403 - 2nd Opinion Verify Scope of Problem Doctor Recommends Defer Action
A00404 -
A00405 - Follow up ref SDS 35 AW6M, ref SDS 30 AW6M.
A00406 -
A00407 - Millie asked again, following up work on 040318, ref SDS 27 AW6M,
A00408 - about getting a 2nd opinion from UCSF and Stanford to help the medical
A00409 - team develop a work plan to recover from changes in her diagnosis and
A00410 - prognosis.
A00412 -  ..
A00413 - The doctor explained that the new diagnosis today, ref SDS 0 6T5G,
A00414 - does not create a more complex scenario that requires review of case
A00415 - history by people experienced with IBC to develop a treatment plan in
A00416 - order to avoid heightened risks to the patient because IBC is an
A00417 - aggressive cancer that spreads quickly, ref SDS 35 YM3M, because IBC
A00418 - is a rare disease which is not encountered often in oncology
A00419 - departments, shown by research on 040517, ref SDS 35 6M9H, and because
A00420 - the doctor and patient partnership faces a dilemma posed by the doctor
A00421 - today. ref SDS 0 JK8L
A00422 -
A00423 -        [On 040812 the doctor described patient's condition
A00424 -        presenting a difficult dilemma on treating IBC. ref SDS 45 T75L
A00426 -         ..
A00427 -        [On 060809 advice nurse recommends getting 2nd opinion right
A00428 -        away on treatment, ref SDS 65 3J4O, because IBC is a rare,
A00429 -        aggressive disease that goes through the patient like a hot
A00430 -        knife through butter, reported earlier on 060807. ref SDS 63
A00431 -        JR9Y
A00433 -  ..
A00434 - The doctor noted today that his department of oncology in the Walnut
A00435 - Creek, CA hospital has a lot of experience with IBC.  The initial
A00436 - impression conveyed was of treating thousands of IBC patients.  When
A00437 - asked for clarification, the doctor corrected saying it was not
A00438 - "thousands," but he claimed experience treating more IBC patients than
A00439 - are seen by Cancer Centers at Stanford and at UCSF.  The doctor did
A00440 - not answer questions on the numbers of IBC patients he has treated,
A00441 - nor other isues planned for review today, per above, ref SDS 0 MU7K,
A00442 - contrary to the request in the letter on 040610 on preparing for the
A00443 - meeting today. ref SDS 41 OH6R
A00444 -
A00445 -        [On 040909 Kaiser failed to perform duty to obtain support for
A00446 -        diagnosis and treatment on grounds that Kaiser policies prevent
A00447 -        referrals because Kaiser has experience treating IBC.
A00448 -        ref SDS 46 X842
A00450 -         ..
A00451 -        [On 050727 surgeon reported seeing one case like Millie's maybe
A00452 -        5 years ago, because IBC is a very rare form of cancer that
A00453 -        strikes less than 1% of patients who get breast cancer.
A00454 -        ref SDS 57 QJ3Q
A00456 -         ..
A00457 -        [...below, issues to review with the doctor for verifying
A00458 -        treatment regimen. ref SDS 0 S79G
A00460 -         ..
A00461 -        [...below, questions for Tumor Board on reviewing and revising
A00462 -        recommendations based on new report of IBC. ref SDS 0 8K5M
A00464 -  ..
A00465 - The doctor recommended against getting a 2nd opinion at this time,
A00466 - discussed previously on 040318, ref SDS 27 AW6M, prior to diagnosis
A00467 - today of IBC, per above. ref SDS 0 6T5G  The doctor proposed waiting a
A00468 - few months until after experience with Avastin trial shows positive or
A00469 - negative results.  When the patient must decide on having surgery,
A00470 - then get a 2nd opinion to help resolve the dilemma posed by the doctor
A00471 - today, per above, ref SDS 0 JK8L
A00472 -
A00473 -
A00474 -
A00475 -
A00476 -
A00477 -
A005 -

SUBJECTS
Tumor Board Re-hearing Consider New Evidence on Scope Major Change P

AF03 -
AF0401 -  ..
AF0402 - Tumor Board Report Requires Support Showing What was Reviewed
AF0403 - CA 15-3 Key Criteria Patient Progress Reviewed by Tumor Board
AF0404 - Surgery Proposed by Tumor Board to Remove Lymph Nodes If Necessary
AF0405 -
AF0406 - Follow up ref SDS 35 4R59.
AF0407 -
AF0408 - Millie requested that the pathology report received on 040517, and the
AF0409 - doctor's new diagnosis of IBC be submitted to the Tumor Board for
AF0410 - review and redetermination of treatment, as discussed last month on
AF0411 - 040517. ref SDS 35 H15I  At that time on 040517, minutes of the Tumor
AF0412 - Board hearing showed no awareness of IBC, and presented scant guidance
AF0413 - for Millie's recovery. ref SDS 35 F77M  Since the doctor was behind
AF0414 - schedule, discussion was deferred to the meeting today. ref SDS 35
AF0415 - BE3L
AF0417 -  ..
AF0418 - Today, the doctor decided not to send the case back to the Tumor Board
AF0419 - for correcting the report he submitted on 040517, ref SDS 35 4R59, by
AF0420 - including the new diagnosis of IBC, which was not known at the time
AF0421 - the Tumor Board met on 040416, and discussed with the patient on
AF0422 - 040419 to the patient. ref SDS 30 AW6M
AF0424 -  ..
AF0425 - As with deferring obtaining a 2nd opinion from Cancer Centers, the
AF0426 - doctor proposed waiting for a few months until after experience with
AF0427 - Avastin trial shows positive or negative results, per above,
AF0428 - ref SDS 0 AW6M, and then, when there is another clear change in the
AF0429 - patient's condition, like the diagnosis of IBC today that elevates the
AF0430 - condition to stage IV, ref SDS 0 6T5G, the patient can request that
AF0431 - the Tumor Board update prior recommendations to help resolve the
AF0432 - dilemma, including whether to have a masectomy, per above, ref SDS 0
AF0433 - JK8L
AF0434 -
AF0435 -     [On 040812 doctor recommended against getting input from the Tumor
AF0436 -     Board to resolve treatment dilemmas presented to the patient.
AF0437 -     ref SDS 45 FV6O
AF0439 -      ..
AF0440 -     [On 041104 patient removed from Taxol Avastin trial because a CT
AF0441 -     test reported finding a pulminary emboli blood clot. ref SDS 48
AF0442 -     N43I
AF0444 -      ..
AF0445 -     [On 041130 patient requests Tumor Board review to develop new
AF0446 -     treatment plan; doctor rcommended against Tumor Board review to
AF0447 -     avoid embarrassment submitting a simple case for analysis of a
AF0448 -     Stage IV breast cancer patient, with delayed diagnosis of IBC, who
AF0449 -     has been removed from treatment due to side effects, and is
AF0450 -     currently not receiving treatment. ref SDS 50 YR8F
AF0451 -
AF0452 -
AF0453 -
AF0454 -
AF0455 -
AF0456 -
AF0457 -
AF0458 -
AF0459 -
AF05 -

SUBJECTS
Tumor Board New Information IBC Diagnosis Follow Up Review Address I
Tumor Board Procedures Patient Support Doctor Patient Partnership Su
2nd Opinion Verify Scope of Problem and Treatment Planning Tumor Boa

AK05 -
AK0601 -  ..
AK0602 - Tumor Board Follow Up Review Address New Information
AK0603 -
AK0604 - Follow up ref SDS 35 F751.
AK0605 -
AK0606 - Issues pending from Tumor Board report were not reviewed.
AK0607 -
AK0608 -
AK0609 -
AK0610 -
AK0611 -
AK0612 -
AK07 -

SUBJECTS
Metastasis New Nonspecific May be Post Treatment Trauma Inflammatory Ch
PET Scan Findings Show Previous Metastatic Lymphadenopathy No Longer Ac
CT Scan Findings Show 2 New 1 CM Masses in Area of Prior Surgery for Ly
CT Scan Findings Show 1 CM Masses Increased to 1.5 CM 50% Growth
CT Scan Test Shows No Evidence Progression Distant Metastasis Stable Co
CT Test Final Version Marked Addendum Pending To Be Finalized Mistak
CT Test Analysis on 040416 Finding Cancer Metastasis Limited to Neck

AV09 -
AV1001 -  ..
AV1002 - Cancer Neck Only Evidence of CT Scan Shows Distant Metastasis
AV1003 - CT Scan Shows Evidence of Distant Metastasis Carcinoma Only in the N
AV1004 -
AV1005 - Follow up ref SDS 35 LK5L, ref SDS 30 LK5L.
AV1006 -
AV1007 - No discussion.
AV1008 -
AV1010 -  ..
AV1011 - Distant Metastasis Cancer Neck Only Evidence of CT Scan Shows
AV1012 -
AV1013 - Follow up ref SDS 35 WE7N, ref SDS 30 WE7N.
AV1014 -
AV1015 - No discussion.
AV1016 -
AV1017 -
AV1018 -
AV1019 -
AV1020 -
AV1021 -
AV11 -

SUBJECTS
Blood Tests Painful Conditions Requires Higher Skilled Technician to
Port for New Treatments Administered Intravenously Avoids Pain and D
Port Will Provide Partial Releif from Excessive Needle Insertions in

B205 -
B20601 -  ..
B20602 - Port Catheter Working Well Solves Prior Problems Using Needles
B20603 -
B20604 - Follow up ref SDS 35 CO3G, ref SDS 29 CO3G.
B20605 -
B20606 - No discussion.
B20607 -
B20608 -
B20609 -
B20610 -
B20611 -
B20612 -
B207 -