CONTACTS 

SUBJECTS
Immediate Action Required Review Treatment Options and Determine New

1503 -
1503 -    ..
1504 - Summary/Objective
1505 -
150501 - Follow up ref SDS 34 0000. ref SDS 32 0000.
150502 -
150503 - Arlette was extremely helpful coordinating with Kaiser on her day off,
150504 - and while recuperating from surgery herself. ref SDS 0 Q65G  Michele
150505 - was proactive scheduling a meeting tomorrow morning to begin a process
150506 - for selecting a different drug regimen. ref SDS 0 QE8G  Submitted
150507 - background for the doctor to prepare for a meeting tomorrow on
150508 - selecting a new drug protocol. ref SDS 0 SL8V  Mention consideration
150509 - of biopsy. ref SDS 0 SL5T
150510 -
150511 -        [On 060808 examination shows improvement, IBC red rash delayed
150512 -        reaction to treatment, inflammation begins to wain. ref SDS 36
150513 -        VO6G
150514 -
150515 -
150516 -
150518 -  ..
1506 -
1507 -
1508 - Progress
1509 -
150901 - Hot Knife through Butter IBC Very Bad Cancer
150902 -
150903 - Received ref DRT 1 0001 from Arlette responding to Millie's letter,
150904 - ref DIP 1 0001 submitted to Arlette for the primary care physician
150905 - yesterday, ref SDS 34 VK4F, and requests notification of the back up
150906 - doctor to discuss worsening IBC, and consideration of changing
150907 - treatment.
150909 -  ..
150910 - Arlette says...
150911 -
150912 -    1.  God, I am so sorry.  IBC is a very bad disease.  As Dr.
150913 -        Simmons says;"It is like a hot knife through butter".  You do
150914 -        know that don't you?   But, still we must persevere.
150915 -        ref DRT 1 0001
150917 -  ..
150918 - Research on 040517 indicated IBC is a rare, aggressive cancer that
150919 - advances rapidly, with average longevity 18 months, ref SDS 5 TO7L,
150920 - and was discussed with Millie on 040607. ref SDS 6 0001
150922 -  ..
150923 - On 040614 primary care physician advised Millie that diagnosis of IBC
150924 - changed Millie's level of care to stage IV cancer, and further advised
150925 - of dim prospects for life ending in months rather than years.
150926 - ref SDS 8 QH8F
150927 -
150928 -            [...below, Millie saw a film on IBC that reinforced IBC is
150929 -            a very serious, aggressive cancer. ref SDS 0 JR9Y
150931 -             ..
150932 -            [On 060808 examination shows IBC red rash shows delayed
150933 -            reaction to treatment, begins to wain. ref SDS 36 VO6G
150935 -             ..
150936 -            [On 060809 Arlette recommends getting 2nd opinion from UCSF
150937 -            and offers assistance assembling medical records needed for
150938 -            the 2nd opinion. ref SDS 38 3J4O
150940 -  ..
150941 - Arlette's letter continues...
150942 -
150943 -    2.  I won't be in until Wednesday and I think  this needs to be
150944 -        addressed sooner. ref DRT 1 P15N
150946 -         ..
150947 -    3.  Each day a different person is on-call  for Dr.  Johnson.  They
150948 -        rotate, so I don't know who it will be on Monday,  but I want
150949 -        you to call Michele and get her to speak to the doctor on-call
150950 -        for him Monday.  Tell them everything you just told me and tell
150951 -        them you  either want an appt. or for someone to call you today
150952 -        (today being  Monday).  You need these questions answered
150953 -        before Thursday. ref DRT 1 576G
150955 -         ..
150956 -    4.  Call 295-4030, press option 4 and you will get an advise nurse,
150957 -        then ask to speak to Michele.  Tell her I told you to call
150958 -        her. ref DRT 1 P16O
150960 -         ..
150961 -    5.  Good Luck and I will be praying for you.  Let me know what
150962 -        happens. ref DRT 1 F77I
150964 -  ..
150965 - Millie sent a copy to Arlette of a letter to Kaiser confirming plans
150966 - for a meeting tomorrow. ref SDS 0 SM3Q
150968 -  ..
150969 - Arlette's letter continues...
150970 -
150971 -    6.  My eye is healing, but I still don't see as well as I did
150972 -        before.   At least I can see, huh?  Thanks for asking.
150973 -        ref DRT 1 00W2
150975 -  ..
150976 - Arlette refers to Millie's letter yesterday. ref SDS 34 OJ6V
150977 -
150978 -
150979 -
150980 -
150982 -  ..
1510 -
1511 -
1512 - 0920
1513 -
151301 - Submitted ref DIT 1 0001 to Mil saying...
151302 -
151303 -    1.  Below is a letter from Arlette sent last night.  It responds to
151304 -        the letter which you requested (also shown below) asking about
151305 -        whether to change treatment scheduled for this Thursday.
151306 -        ref DIT 1 0001
151308 -         ..
151309 -    2.  Arlette recommends calling the hospital (925 295-4030 option
151310 -        4), and tell the advice nurse that Arlette recommends that you
151311 -        talk to Michele.  Then report to Michele the details in the
151312 -        letter to Arlette (below). ref DIT 1 HQ5N
151314 -         ..
151315 -    3.  I'll call you on this. ref DIT 1 FQ6I
151316 -
151317 -
151319 -  ..
1514 -
1515 -
1516 - 0910
1517 -
151701 - Millie called.
151702 -
151703 - She has received the letter, per above, ref SDS 0 VC4O, on Arlette's
151704 - ideas for expediting review in her case, per above. ref SDS 0 7Q8H
151706 -  ..
151707 - Mil called the hospital, but the Advice Nurse department does not
151708 - answer calls until 1015.
151710 -  ..
151711 - She requested support following up to implement Arlette's
151712 - recommendations. ref SDS 0 F65S
151713 -
151714 -
151715 -
151716 -
151718 -  ..
1518 -
1519 -
1520 - 1020
1521 -
152101 - Michele called.
152102 -
152103 - She got a call from Arlette this morning, and understands the urgency
152104 - of Millie's situation, per Arlette's letter to Mil, above. ref SDS 0
152105 - 7Q8H
152107 -  ..
152108 - Michele looked through Kaiser's computer.
152110 -  ..
152111 - Initially, Michele proposed that Millie meet with Doctor Musci.  She
152112 - noticed that he is the backup for Doctor Liao, who is associated with
152113 - Millie in Kaiser's computer.  We reviewed the record showing Millie's
152114 - primary care physician in Oncology is on vacation.  Millie only saw
152115 - Doctor Liao in the Head and Neck Department once to perform a biopsy
152116 - on 040303. ref SDS 3 0001
152118 -  ..
152119 - Michele said that Doctor McCloud has the rotation to be the backup for
152120 - Millie's primary care physician tomorrow.  She said there is a
152121 - problem.  Doctor McCloud's schedule is booked for tomorrow.  She
152122 - decided that Millie should be examined by Doctor Musci afterall,
152123 - because he has time in his schedule tomorrow.
152125 -  ..
152126 - Scheduled meeting with Doctor Musci for tomorrow.
152127 -
152128 -                   060808 0940
152130 -  ..
152131 - Michele does not know if Doctor Musci has experience working with IBC
152132 - patients.  Background on 040517 says IBC is a very rare disease which
152133 - is not well known among doctors who treat breast cancer. ref SDS 5
152134 - TO7L
152136 -  ..
152137 - She will submit Arlette's letter recommending immediate action, and
152138 - noting the seriousness of IBC.  This will include Millie's letter
152139 - yesterday notifying Kaiser of 3rd relapse of IBC and treatment issues
152140 - to be considered during the meeting tomorrow. ref SDS 34 OJ8V
152141 -
152142 -
152143 -
152144 -
1522 -

SUBJECTS
Examination Schedule 060808 Urgent IBC 3rd Relapse Change Treatment

2103 -
2104 - 1120
210501 -  ..
210502 - Millie submitted ref DIT 2 0001 to Michele saying...
210503 -
210504 -    1.  This confirms discussion this morning. ref SDS 0 G243  You have
210505 -        scheduled a meeting for me with Doctor Musci tomorrow Aug 8,
210506 -        2006 0940. ref SDS 0 QE8G  Thanks for jumping on this.
210507 -        ref DIT 2 0001
210509 -         ..
210510 -    2.  The letter from Arlette this morning discusses the urgency of
210511 -        early action, ref DRT 1 0001, to treat a 3rd relapse of IBC.
210512 -        Arlette responded to my letter ref DIP 1 0001, to Kaiser
210513 -        yesterday. ref SDS 34 IJ5O
210515 -         ..
210516 -    3.  Please forward this to Doctor Musci so he can prepare to
210517 -        address the following issues...
210518 -
210519 -                [On 060808 doctor's notes on meeting with patient do
210520 -                not present patient's notice of change in status that
210521 -                requires examination and consideration of changing
210522 -                course. ref SDS 36 SE4K
210524 -             ..
210525 -        1.  Will treatment proceed with cycle 2 of Taxotere
210526 -            capecitabine scheduled for Thursday Aug 10? ref DIT 2 SW6N
210527 -
210528 -                [On 060808 Kaiser decided to continue treatment with
210529 -                Taxotere and capeticabine (Xeloda). ref SDS 36 PF3O
210531 -             ..
210532 -        2.  Will treatment occur on Thursday with a different
210533 -            chemotherapy agent in light of the urgency for arresting
210534 -            evident accelerated advance of disease. ref DIT 2 GI6V
210535 -
210536 -               [On 060808 examination shows improvement, IBC red rash
210537 -               delayed response to treatment, inflammation begins to
210538 -               wain, ref SDS 36 VO6G, Kaiser hopes CA 15-3 cancer
210539 -               marker will fall. ref SDS 36 GJ5M and ref SDS 36 TV7L
210541 -                ..
210542 -               [On 060808 decided to proceed with treatment on
210543 -               Thursday, 060810 with currently prescribed dose levels
210544 -               of Taxotere and capecitabine (Xeloda). ref SDS 36 N96O
210546 -                ..
210547 -               [On 060810 CA 15-3 87 significant rise of 16 points, and
210548 -               above level previously discussed for changing treatment;
210549 -               ref SDS 39 2N5J, treatment delayed by slightly low blood
210550 -               counts because doctor on vacation no one would approve
210551 -               timely treatment. ref SDS 39 NW9K
210553 -                ..
210554 -               [On 060814 treatment 2nd cycle begins with Taxotere
210555 -               capecitabine (Xeloda), blood counts rise way above
210556 -               requirements. ref SDS 40 0001
210558 -                ..
210559 -               [On 060817 CA 15-3 73 dramatic improvement, reversing 6
210560 -               month rise of cancer marker, now falling back below
210561 -               critical 80 level, ref SDS 41 TS5O; supports observation
210562 -               impression on 060808 that IBC red rash subsiding and
210563 -               breaking up, ref SDS 36 VO6G, further reported on
210564 -               060817, ref SDS 41 NU6L, evidence patient experiencing
210565 -               delayed response to treatment under scenario #1,
210566 -               developed on 060808. ref SDS 36 J16O
210568 -             ..
210569 -        3.  If the drug is changed, what is the basis of the change?
210570 -            ref DIT 2 GI7P  For example, Doctor Benz at UCSF
210571 -            recommended in a 2nd opinion received on 041117 treatment
210572 -            with Taxotere and Xeloda, and that after disease
210573 -            progresses, as it now has, switch to Gemzar and Taxotere.
210574 -            ref SDS 11 OU6S
210576 -  ..
210577 - This question reflects letter to Kaiser on 060720, ref SDS 22 21A6,
210578 - and letter from Kaiser on 060721, ref SDS 24 YU46, which left this
210579 - question open. ref SDS 24 H45G
210580 -
210581 -               [On 060808 emergency meeting to review rise of IBC red
210582 -               rash, Kaiser deferred review of available treatments,
210583 -               because by the time of examination, IBC rash seemed to
210584 -               decline. ref SDS 36 K36G
210586 -  ..
210587 - Note Doctor Benz also proposed considering another form of liposomal
210588 - anthracycline known as Doxil, or combinations in couplets involving
210589 - such agents as Gemzar. ref SDS 11 OU5V
210591 -  ..
210592 - There is also the question of high dose chemotherapy (HDC) reviewed on
210593 - 060711. ref SDS 20 KY4G
210595 -  ..
210596 - Millie's letter to Kaiser continues...
210597 -
210598 -        4.  Other options have been considered, ref DIT 2 GI77, as
210599 -            shown in my letter yesterday on 060806, ref SDS 34 I54G,
210600 -            and discussed with Doctor Johnson during a meeting on July
210601 -            11th.
210603 -             ..
210604 -        5.  Doctor Grissom in a 2nd opinion recently suggested on
210605 -            060802 performing a biopsy to study mutated cancer cells
210606 -            toward targeting treatment. ref SDS 33 IT7U  Perhaps Doctor
210607 -            Musci can investigate this idea for discussion tomorrow.
210608 -            ref DIT 2 GI8R
210609 -
210610 -               [On 060807 Doctor Grissom clarifies that the biopsy test
210611 -               is for status change, which was previously considered.
210612 -               ref SDS 35 S554
210614 -         ..
210615 -    4.  Michele, again thanks for being proactive.  Since this is my
210616 -        3rd relapse of a very aggressive cancer, not sure how many
210617 -        "bites at the apple" we are going to get.  I know doctors can't
210618 -        spend all their time on one patient; just hoping the doctor
210619 -        doesn't come in tomorrow and say "Well!  What seems to be the
210620 -        problem?" That's a joke (hopefully). ref DIT 2 PPUY
210622 -         ..
210623 -    5.  Arlette asks in her letter today to be kept posted, so I am
210624 -        sending her a copy. ref SDS 0 F65W  You two make a great team.
210625 -        ref DIT 2 GI9W
210627 -         ..
210628 -    6.  Please send me an email response indicating action taken.  I'm
210629 -        at work today so you can reach me directly at 415 984 8291 for
210630 -        real-time coordination. ref DIT 2 00W2
210631 -
210632 -
210634 -  ..
2107 -
2108 -
2109 - 1148
2110 -
211001 - Called Millie and notified her of status, per above. ref SDS 0 423C
211002 -
211003 - She is scheduled to see Doctor Musci tomorrow 0940.
211005 -  ..
211006 - Millie had not received the letter to Kaiser.
211007 -
211008 -
211010 -  ..
2111 -
2112 -
2113 - 1151
2114 -
211401 - Called Michele.
211402 -
211403 - Michele had not received Millie's letter.  She thinks the email
211404 - address she gave may have been incorrect.
211406 -  ..
211407 - Checked mail.  Found that Millie's letter bounced back.  Michele said
211408 - to add a middle initial.
211410 -  ..
211411 - Did this and resubmitted.
211413 -  ..
211414 - While we talked, Michele received Mil's letter.  We reviewed the
211415 - letter.  Michele said this presents a clear, concise, complete
211416 - communication on the purpose for an emergency meeting, and options to
211417 - be considered for switching chemotherapy agents in the search for an
211418 - effective treatment.
211419 -
211421 -  ..
2115 -
2116 -
2117 - 1356
2118 -
211801 - Received ref DRT 2 0001 from Michele saying...
211802 -
211803 -        Just to let you now I received your e-mail and will forward it
211804 -        to Dr.  Musci for your appt tomorrow.
211806 -  ..
211807 - This completes the loop on notice for Kaiser to prepare for the
211808 - meeting tomorrow, per above. ref SDS 0 SM4X
211809 -
211810 -
211812 -  ..
2119 -
2120 -
2121 - 1729
2122 -
212201 - Millie submitted a film today on breast cancer.
212202 -
212203 - It has several telephone numbers to call for advice...
212205 -                   ..
212206 -                  206 404 3500
212207 -                  866 447 3467
212208 -
212210 -  ..
2123 -
2124 -
2125 - 2300
2126 -
212601 - Received ref DRT 3 0001 from Arlette saying...
212602 -
212603 -        Let me know how the meeting with Dr. Musci went and what you
212604 -        decided to do.
212606 -  ..
212607 - Would be nice to know if Arlette is aware of Doctor Musci's
212608 - experience treating IBC.
212609 -
212610 -           [On 060808 during meeting at Kaiser backup doctor described
212611 -           experience treating 1 IBC patient. ref SDS 36 NO93
212612 -
212613 -           [On 060808 Arlette commends backup doctor's experience and
212614 -           practice. ref SDS 37 8I5K
212615 -
212617 -  ..
2127 -
2128 -
2129 - 2330
2130 -
213001 - Millie submitted ref DIT 3 0001 to Arlette saying...
213002 -
213003 -    1.  I am just about to turn out the lights.  Wondered if you have
213004 -        worked with Doctor Musci, and can say if he is good with
213005 -        documents and details or more of a people person?  Does he have
213006 -        experience treating IBC? ref DIT 3 0001
213008 -         ..
213009 -    2.  When i got your note today about IBC going through people like
213010 -        a knife through butter, that was not a happy thought.
213011 -        ref SDS 0 Q65G  Someone in the office sent me and some of the
213012 -        other gals a video on IBC, and I was startled to learn it is
213013 -        very rare, and even a lot of oncologists are not familiar with
213014 -        symptoms and treatment. ref DIT 3 AO5N
213016 -  ..
213017 - Research on 040517 indicated IBC is a rare, aggressive cancer that
213018 - advances rapidly, with average longevity 18 months, ref SDS 5 TO7L,
213019 - and was discussed with Millie on 040607. ref SDS 6 0001
213021 -            ..
213022 -           [On 060808 examination shows IBC red rash possible delayed
213023 -           reaction to treatment, begins to wain. ref SDS 36 VO6G
213024 -           Millie asks backup doctor about experience treating IBC.
213025 -           ref SDS 36 NO93
213027 -            ..
213028 -           [On 060808 Arlette commends backup doctor's experience and
213029 -           practice. ref SDS 37 8I5K
213031 -            ..
213032 -           [On 060808 Arlette apologizes for candor on IBC being a very
213033 -           serious disease. ref SDS 37 QO6Q
213035 -            ..
213036 -           [On 060808 Millie commends Arlette's candor disclosing IBC
213037 -           very serious cancer. ref SDS 37 DT3V
213039 -  ..
213040 - Millie's letter to Kaiser continues...
213041 -
213042 -    3.  That may be why in 2004 when IBC was first diagnosed by the
213043 -        biopsy on 040419, ref SDS 4 789F, later Doctor Johnson talked
213044 -        about getting 2nd opinions from Stanford and UCSF Med Centers
213045 -        where they see a lot of IBC patients. ref DIT 3 LO6K
213046 -
213047 -           [On 060809 Millie's letter to Kaiser recognizes that IBC is
213048 -           rare cancer disease, ref SDS 38 K65S, and worries about
213049 -           Kaiser's expertise treating relapse. ref SDS 38 K65L
213051 -         ..
213052 -    4.  So, it turned out that Rod is very aware of how serious IBC is,
213053 -        When Doctor Johnson gave us the biopsy report during a meeting
213054 -        on 040517, ref DIT 3 BP7F, he didn't say anything about IBC, so
213055 -        I didn't have a clue.  He just handed us a document.  Later,
213056 -        Rod read it and did some research, all written up in my record.
213057 -        ref SDS 5 0001
213059 -         ..
213060 -    5.  I remember now that we discussed this, but, with all the
213061 -        activity the seriousness of IBC disease just didn't sink in
213062 -        until your letter, ref SDS 0 Q65G, and then the film clip
213063 -        today. ref DIT 3 FU7O  Maybe I've been lucky to have people
213064 -        like Doctor Johnson shielding me from worry, so I can
213065 -        concentrate on treatments, and such.  With this latest episode,
213066 -        the treatment not working, as reported in my letter yesterday,
213067 -        ref SDS 34 OJ7S, this gets your attention.
213069 -  ..
213070 - IBC was first discussed with Millie on 040607 based on review of
213071 - biopsy report received from Kaiser. ref SDS 6 GX6G  At that time, she
213072 - had a lot of activity meeting with doctors, tests, surgery, and
213073 - treatments that distracted attention from the seriousness of IBC.  A
213074 - letter to the doctor on 040610 requested confirmation that Kaiser has
213075 - diagnosed IBC. ref SDS 7 OH4S  On 040614 doctor confirmed diagnosis of
213076 - IBC, ref SDS 8 6T5G, and changed staging from II to IV, the most
213077 - severe patient condition for cancer. ref SDS 8 6M9H
213079 -            ..
213080 -           [On 060808 examination shows IBC red rash shows delayed
213081 -           reaction to treatment, begins to wain. ref SDS 36 VO6G
213083 -            ..
213084 -           [On 060809 Millie's letter to Kaiser recognizes that IBC is
213085 -           rare cancer disease, ref SDS 38 K65S, and worries about
213086 -           Kaiser's expertise treating relapse. ref SDS 38 K65L
213088 -            ..
213089 -           [On 060817 CA 15-3 73 dramatic improvement, reversing 6
213090 -           month rise of cancer marker, now falling back below critical
213091 -           80 level, ref SDS 41 TS5O; supports observation impression
213092 -           on 060808 that IBC red rash subsiding and breaking up,
213093 -           ref SDS 36 VO6G, further reported on 060817, ref SDS 41
213094 -           NU6L, evidence patient experiencing delayed response to
213095 -           treatment under scenario #1, developed on 060808.
213096 -           ref SDS 36 J16O
213098 -  ..
213099 - Millie's letter to Arlette continues...
213100 -
213101 -    6.  Should I go back to UCSF and Stanford for 2nd opinions again,
213102 -        planned on 060725. ref SDS 23 IS6F  I hate sitting in a room
213103 -        and hearing people talk about me like an object, or an
213104 -        experiment or something, and then having to pay them for it.
213105 -        On the other hand, Doctor Benz at UCSF came up with the idea to
213106 -        try Taxotere and Xeloda, which really saved my life last year,
213107 -        as shown in patient history on 050812. ref SDS 18 SK7K
213109 -         ..
213110 -    7.  Sorry to be running on.  My mind is exploding.  I hope tomorrow
213111 -        goes well. ref DIT 3 AX9G
213113 -         ..
213114 -    8.  I will let you know what happens. ref DIT 3 JX9J
213116 -         ..
213117 -    9.  I hope the surgery did not make your eyes worse, and that your
213118 -        vision will get better with more healing. ref DIT 3 00W2
213119 -
213120 -
213121 -
213122 -
213123 -
213124 -
213125 -
213126 -
213127 -
213128 -
213129 -
213130 -
2132 -