CONTACTS 

SUBJECTS
IBC Progressing Rapidly Ask About Changing Treatment Rather than Con

1103 -
1103 -    ..
1104 - Summary/Objective
1105 -
110501 - Follow up ref SDS 24 0000. ref SDS 22 0000.
110502 -
110503 - Millie recoverying physicially from chemotherapy treatment on 060721;
110504 - however, IBC red rash seems to be increasing significantly.  Millie
110505 - notified Kaiser of change in condition. ref SDS 0 EF4M  She asks if
110506 - treatment that seems to be failing should proceed on regular schedule
110507 - this Thursday, 060810? ref SDS 0 OJ8V
110508 -
110509 -    [On 060817 CA 15-3 73 dramatic improvement, reversing 6 month rise
110510 -    of cancer marker, now falling back below critical 80 level,
110511 -    ref SDS 31 TS5O; supports observation impression on 060808 that IBC
110512 -    red rash subsiding and breaking up, ref SDS 28 VO6G, further
110513 -    reported on 060817, ref SDS 31 NU6L, evidence patient experiencing
110514 -    delayed response to treatment under scenario #1, developed on
110515 -    060808. ref SDS 28 J16O
110516 -
110517 -
110518 -
110520 -  ..
1106 -
1107 -
1108 - Progress
1109 -
110901 - Millie feels pretty well at the end of the 1st cycle of Taxotere and
110902 - capecitabine (Xeloda), begun on 060721. ref SDS 17 0001  She took the
110903 - last oral treatment of the 2 week cycle on Friday, 060804.
110905 -  ..
110906 - This morning she went to exercise class, as she did on Friday, and
110907 - yesterday.
110908 -
110909 -
110910 -
110911 -
110912 -
110913 -
1110 -

SUBJECTS
IBC Progressing Rapidly Ask About Changing Treatment Rather than Con

1703 -
170401 -  ..
170402 - Treatment Failing IBC Red Rash Spreads Rapidly
170403 -
170404 - Red rash on the left breast is progressing rapidly, indicating
170405 - treatment is not effective.  Previously, after starting treatment with
170406 - Taxotere and capecitabine on 050415 IBC subsided substantially by
170407 - 050502. ref SDS 7 EO5J  Nonresponse to previously successful treatment
170408 - was discussed during the meeting on 060711. ref SDS 13 R05W
170409 -
170410 -    [On 060808 examination shows improvement, IBC red rash delayed
170411 -    reaction to treatment, inflammation begins to wain. ref SDS 27
170412 -    VO6G
170414 -     ..
170415 -    [On 060810 CA 15-3 jumps to 87, 7 above the 80 level cited for
170416 -    considering change of treatment, and a very large jump in
170417 -    patient history, ref SDS 30 2N5J, order follow up test to
170418 -    assess correlation between observed decline IBC inflammation
170419 -    and rising CA 15-3. ref SDS 30 854L
170421 -     ..
170422 -    [On 060817 CA 15-3 73 dramatic improvement, reversing 6 month rise
170423 -    of cancer marker, now falling back below critical 80 level,
170424 -    ref SDS 32 TS5O; supports observation impression on 060808 that IBC
170425 -    red rash subsiding and breaking up, ref SDS 29 VO6G, further
170426 -    reported on 060817, ref SDS 32 NU6L, evidence patient experiencing
170427 -    delayed response to treatment under scenario #1, developed on
170428 -    060808. ref SDS 29 J16O
170430 -     ..
170431 -    [On 060922 slow response to treatment for 3rd IBC relapse reported
170432 -    in a letter to the doctor, ref SDS 33 LE48; study of patient
170433 -    history may indicate recovery compares favorably to treatment in
170434 -    2005 for 2nd IBC relapse. ref SDS 33 9F35
170436 -  ..
170437 - Treatment planning in the event of disease progression was, also,
170438 - discussed with the doctor on 060711, ref SDS 13 QO8F, who has
170439 - consistently emphasized importance of timely change in treatment to
170440 - maintain local control.
170442 -  ..
170443 - Millie notified the doctor of evident failure and requested guidance
170444 - on changing treatments, rather than carry out the initial work plan on
170445 - 060711 to begin the 2nd cycle of treatment with Taxotere and
170446 - capecitabine (Xeloda) scheduled for 060810, reported on 060721.
170447 - ref SDS 17 QK6L  Since the primary care physician is on vacation,
170448 - beginning on 060804 - 060823, Millie sent the notification through his
170449 - chief nurse, Arlette.
170451 -  ..
170452 - Millie submitted ref DIT 1 0001 for Doctor Johnson through the nurse,
170453 - Arlette, and requests notification of the back up doctor.
170455 -  ..
170456 - Arlette has been helpful previously distributing notice of change in
170457 - medical conditions that requires action by the doctor.  On 060726 she
170458 - distrubuted a letter on new family history of genetic cause for
170459 - pulmonary emboli. ref SDS 23 0001
170461 -  ..
170462 - Millie's letter today says...
170463 -
170464 -    1.  Since you are on vacation as of August 4th, I am sending this
170465 -        through Arlette for distribution to appropriate doctors and
170466 -        staff.
170468 -         ..
170469 -    2.  Arlette,
170471 -         ..
170472 -        How are you recovering from eye surgery?  Hope you don't have
170473 -        any complications. ref DIT 1 SK6F
170475 -  ..
170476 - On 060726 Arlette reported she had an eye operation. ref SDS 23 0001
170477 -
170478 -            [On 060807 Arlette says her eyesight is less than before.
170479 -            ref SDS 26 F67U
170481 -  ..
170482 - Millie's letter to Kaiser continues...
170483 -
170484 -    3.  Ugh... Bad news.  My chest looks like a red beet. ref DIT 1
170485 -        4L6L
170487 -         ..
170488 -    4.  My IBC disease is much worse after 1 cycle of treatment with
170489 -        Taxotere and Xeloda, which ended this past Friday. ref DIT 1
170490 -        FL6O
170491 -
170492 -            [On 060807 Arlette says this needs to be addressed
170493 -            immediately by Kaiser. ref SDS 26 7Q8H
170495 -             ..
170496 -            [On 060808 examination shows improvement, IBC red rash
170497 -            delayed reaction to treatment, inflammation begins to wain.
170498 -            ref SDS 28 VO6G
170500 -             ..
170501 -            [On 060810 CA 15-3 jumps to 87, 7 above the 80 level cited
170502 -            for considering change of treatment, and a very large jump
170503 -            in patient history, ref SDS 30 2N5J, order follow up test
170504 -            to assess correlation between observed decline IBC
170505 -            inflammation and rising CA 15-3. ref SDS 30 854L
170507 -             ..
170508 -            [On 060817 CA 15-3 73 dramatic improvement, reversing 6
170509 -            month rise of cancer marker, now falling back below
170510 -            critical 80 level, ref SDS 32 TS5O; supports observation
170511 -            impression on 060808 that IBC red rash subsiding and
170512 -            breaking up, ref SDS 29 VO6G, further reported on 060817,
170513 -            ref SDS 32 NU6L, evidence patient experiencing delayed
170514 -            response to treatment under scenario #1, developed on
170515 -            060808. ref SDS 29 J16O
170517 -             ..
170518 -            [On 060922 Millie asks about slow recovery from IBC,
170519 -            ref SDS 33 MG6F, analysis indicates recovery may be ahead
170520 -            of rate IBC rash receded during 2005, ref SDS 33 9F35, and
170521 -            cites resistance to treatment from mastectomy surgery that
170522 -            removed blood vessels which prevents delivering treatment
170523 -            to infected tissue. ref SDS 33 ML3I
170525 -             ..
170526 -            [On 061027 asks Kaiser about slow recovery correlation to
170527 -            mastectomy surgery, ref SDS 34 618J, based on analysis on
170528 -            060922. ref SDS 33 ML3I
170530 -         ..
170531 -    5.  Primary care physician said in a letter on July 18th that he is
170532 -        on vacation after Aug 4th, so hopefully someone can let me know
170533 -        what to do.  He said there is a backup doctor.  I don't have an
170534 -        email address, so you are my only contact. ref DIT 1 7Q7I
170536 -         ..
170537 -    6.  Another cycle of treatment starts on Thursday, but am worried
170538 -        about disease spinning out of control.  Primary care physician
170539 -        has talked a lot about losing local control.  Last year,
170540 -        treatment of Taxotere and Xeloda caused IBC rash to subside
170541 -        substantially after a week or so of treatment.  This time the
170542 -        rash is getting worse with the same treatment. ref DIT 1 047O
170543 -        During the meeting on July 11th, the doctor discussed switching
170544 -        treatments if things get worse. ref SDS 13 FP9H and ref SDS 13
170545 -        PF3O
170546 -
170547 -           [On 060808 examination shows improvement, IBC red rash
170548 -           delayed reaction to treatment, inflammation begins to wain.
170549 -           ref SDS 28 VO6G
170551 -            ..
170552 -           [On 060810 CA 15-3 jumps to 87, 7 above the 80 level cited
170553 -           for considering change of treatment, and a very large jump
170554 -           in patient history, ref SDS 30 2N5J, order follow up test to
170555 -           assess correlation between observed decline IBC inflammation
170556 -           and rising CA 15-3. ref SDS 30 854L
170558 -            ..
170559 -           [On 060817 CA 15-3 73 dramatic improvement, reversing 6
170560 -           month rise of cancer marker, now falling back below critical
170561 -           80 level, ref SDS 32 TS5O; supports observation impression
170562 -           on 060808 that IBC red rash subsiding and breaking up,
170563 -           ref SDS 29 VO6G, further reported on 060817, ref SDS 32
170564 -           NU6L, evidence patient experiencing delayed response to
170565 -           treatment under scenario #1, developed on 060808.
170566 -           ref SDS 29 J16O
170568 -         ..
170569 -    7.  I know everybody has problems. ref DIT 1 E89F  I'm very sorry
170570 -        to bother you with mine, and hate to bring this up with the
170571 -        primary care physician on vacation.
170573 -  ..
170574 - Millie's case is very complicated, shown by patient history in the
170575 - record on 050812, ref SDS 11 UF4J, and continuing with history from
170576 - 051021 when Millie had a mastectomy surgery, through the present,
170577 - reported on 060722. ref SDS 19 XQ7H  Doctor Grissom cited complexity
170578 - in Millie's case in a letter dated 060801 and received on 060802.
170579 - ref SDS 25 IT8P
170581 -  ..
170582 - Millie's letter continues...
170583 -
170584 -        Since the doctor is out of the office, can you let me know who
170585 -        is following up?  Should I go ahead with the next cycle on
170586 -        Thursday, or will it be changed? ref DIT 1 O89J  Do I need an
170587 -        examination ahead of the visit scheduled for the end of the
170588 -        month?  Normally, I am off work tomorrow, but plan to go into
170589 -        the office so I can take Thursday off for treatment.  If we
170590 -        change the treatment, what is the basis for selecting another
170591 -        drug?  We discussed taking a biopsy to guide the choice of
170592 -        treatment, but that was deferred.  Should this be reconsidered?
170593 -        Doctor Johnson chose the current treatment last year based on
170594 -        the 2nd opinion of Doctor Benz at UCSF on November 17, 2004.
170595 -        Benz recommended trying Gemzar and Taxotere, when disease
170596 -        progresses under Taxotere and Xeloda, so is that the way to go,
170597 -        or should we try Navelbine, which Doctor Johnson discussed on
170598 -        April 28, a few months ago.  So many questions, by head is
170599 -        spinning.
170601 -  ..
170602 - Background, on 060720 Millie's letter asks doctor for the list of
170603 - treatments for IBC, and strategy for selecting the order of treatment
170604 - in this case. ref SDS 15 SL6G
170605 -
170606 -            [On 060807 Arlette says to call Michelle at Kaiser and have
170607 -            her present new information to the backup doctor for
170608 -            vacationing primary care physician. ref SDS 26 F65S
170610 -             ..
170611 -            [On 060807 schedule emergency meeting to consider switching
170612 -            treatments for increasing effectiveness. ref SDS 26 423C
170614 -             ..
170615 -            [On 060808 examination shows improvement, IBC red rash
170616 -            delayed reaction to treatment, inflammation begins to wain.
170617 -            ref SDS 28 VO6G
170619 -             ..
170620 -            [On 060810 CA 15-3 jumps to 87, 7 above the 80 level cited
170621 -            for considering change of treatment, and a very large jump
170622 -            in patient history, ref SDS 30 2N5J, order follow up test
170623 -            to assess correlation between observed decline IBC
170624 -            inflammation and rising CA 15-3. ref SDS 30 854L
170626 -             ..
170627 -            [On 060817 CA 15-3 73 dramatic improvement, reversing 6
170628 -            month rise of cancer marker, now falling back below
170629 -            critical 80 level, ref SDS 32 TS5O; supports observation
170630 -            impression on 060808 that IBC red rash subsiding and
170631 -            breaking up, ref SDS 29 VO6G, further reported on 060817,
170632 -            ref SDS 32 NU6L, evidence patient experiencing delayed
170633 -            response to treatment under scenario #1, developed on
170634 -            060808. ref SDS 29 J16O
170636 -  ..
170637 - On 060721 primary care physician responded saying in part "What has or
170638 - has not been done, what has or has not been effective, what we can or
170639 - cannot do again in the future," ref SDS 16 YU46; and continued saying
170640 - "Currently our options are limited to a decreasing pool of
170641 - chemotherapeutic agents." ref SDS 16 H45G
170643 -  ..
170644 - On 060802 2nd opinion from Doctor Grissom recommended doing a biopsy
170645 - to help target treatment to the particular biology of recurrent
170646 - disease. ref SDS 25 IT7U
170648 -  ..
170649 - 2nd opinion also suggests getting treatment ideas from Doctor Benz at
170650 - UCSF. ref SDS 25 IT8P  This referral was forwarded to UCSF later that
170651 - day on 060802. ref SDS 25 ZK3Q
170653 -  ..
170654 - Millie's letter continues...
170655 -
170656 -    8.  Your help is greatly appreciated.  I was really hoping things
170657 -        would turn around, but that looks unrealistic now.
170658 -
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1707 -