CONTACTS 

SUBJECTS
Blood Counts NEUTS 1.05 Low Prevent  Crboplatin Chemotherapy Treatme

1403 -
1403 -    ..
1404 - Summary/Objective
1405 -
140501 - Follow up ref SDS 10 0000. ref SDS 9 0000.
140502 -
140503 -
140504 -
140505 -
140507 -  ..
1406 -
1407 -
1408 - Progress
1409 -
140901 - Blood Counts Too Low for Treatment Need Solution
140902 -
140903 - Follow up ref SDS 16 XS6K.
140904 -
140905 - Millie submitted ref DIT 1 0001 to the medical team addressed to
140906 - Doctor Rugo, with copy to primary care physician at Kaiser, and also
140907 - to Brigid, Jackie, and to Arlette...
140908 -
140909 -    1.  Blood counts rose minimally from .95 to 1.05 this past week,
140910 -        reported during treatment at UCSF yesterday.  Catherine
140911 -        indicated the medical team decided not to prescribe Neupogen,
140912 -        following up planning this past Wednesday (080423). ref DIT 1
140913 -        0001
140914 -
140915 -
140917 -  ..
140918 - Airplane Precautions Guidance Requested Risk Cellulitis Lymphedema
140919 -
140920 -
140921 -    2.  I am traveling to visit friends in Seattle, beginning tomorrow,
140922 -        and return on Tuesday.  Will take Keflex medication in case
140923 -        Cellulitis flares up on the road.  I will also wear a surgical
140924 -        mask to reduce risk of infection on the plane, as well as a
140925 -        full arm bandage to reduce effects of flight on lymphedema in
140926 -        the left arm.  Please advise of any additional precautions.
140927 -        ref DIT 1 K75O
140928 -
140929 -
140931 -  ..
140932 - CT Test Report Needed from Kaiser in Time Prepare for Meeting at UCSF
140933 -
140934 -
140935 -    3.  As a result of being out of town, the CT test scheduled for
140936 -        tomorrow was moved up to today.  This should provide time to
140937 -        get results from Kaiser by next Tuesday or Wednesday so there
140938 -        is time to prepare for meeting with the medical team on
140939 -        Thursday.  By copy to Arlette, requesting a reminder to the
140940 -        doctor to make distribution to me on Tuesday or Wednesday using
140941 -        the usual email procedure.  Thanks. ref DIT 1 K76M
140943 -  ..
140944 - The test today ordered by UCSF during the meeting on 080403,
140945 - ref SDS 15 669L, was about 11 weeks after the prior test on 080212.
140946 - ref SDS 10 FP5H
140948 -  ..
140949 - Millie received a letter from the primary care physician at Kaiser
140950 - reporting the doctor is out of the office and not answering
140951 - correspondence until 080428.
140952 -
140953 -            [...below, Millie reports problems CT test technicians
140954 -            required 4 needle punctures to inject contrast medium
140955 -            because only procedure is using needle in right arm, which
140956 -            has been injured by prior needle injections. ref SDS 0 9W9I
140958 -             ..
140959 -            [On 080428 Millie received CT test report from Kaiser
140960 -            demonstrating effective coordination and timely response to
140961 -            the letter today. ref SDS 17 XV9J
140963 -             ..
140964 -            [On 080428 Millie submits letter thanking the doctor for
140965 -            timely submission of CT test. ref SDS 17 659K
140967 -             ..
140968 -            [On 080430 Millie submits agenda for meeting to evaluate
140969 -            progress starting cycle 3 on clinical trial. ref SDS 19
140970 -            1H6Y
140971 -
140972 -
140974 -  ..
140975 - Hiking Best Time Ever at Lafayette Reservoir Energy Rising
140976 - Energy Patient Rising Conflicts Declining Blood Counts
140977 -
140978 -
140979 -    4.  Did my best time ever this morning hiking Lafayette.  Energy
140980 -        seems to be rising while blood counts persistently decline.
140981 -        Tried today not swinging the left arm to keep pace with the
140982 -        hike, hoping to reduce trauma that may contribute to Cellulitis
140983 -        relapse.  Just guessing on this??? ref DIT 1 K77L
140984 -
140985 -
140986 -
140987 -
1410 -

SUBJECTS
CT Test 080425 Evaluate Diagnosis IBC Progression Disease 4th Relaps

3303 -
330401 -  ..
330402 - CT Test Problem Needle 4 Penetrations Required Inject Contrast Medium
330403 -
330404 - Follow up ref SDS 15 669L, ref SDS 10 FP5H.
330405 -
330406 - Millie had the CT test at Kaiser this afternoon, which was ordered by
330407 - the doctor during the meeting at UCSF on 080403, ref SDS 15 669L, and
330408 - scheduled by UCSF at that time for tomorrow on 080426.  The previous
330409 - CT test was at Kaiser 12 weeks ago on 080212. ref SDS 10 FP5H  The
330410 - doctor changed from 8 weeks to a 12-week test schedule in order to
330411 - advance cost containment, and reduce injury to Millie's arm, and was
330412 - justified by patient history showing no evidence of distant metastasis
330413 - nor adenopathy, reported on 071009 ref SDS 6 985H
330415 -  ..
330416 - Since Millie is leaving on a trip tomorrow, a few days ago, she called
330417 - Kaiser and changed the test to today.
330419 -  ..
330420 - Millie took Gastrografin contrast medium an hour or so prior to
330421 - leaving for Kaiser to get the test, as prescribed for preparation.
330422 - She also drank generous amounts of water through the day to help the
330423 - medical team find a good access point for setting the catheter in a
330424 - vein or artery, as planned in the meeting at Kaiser 5 years ago on
330425 - 031205 1645. ref SDS 1 CF3F
330426 -
330427 -            [On 080428 CT test results show stable and minor conditions
330428 -            of lymphadenopathy, no evident progression of IBC disease,
330429 -            and no findings of distant metastasis. ref SDS 17 EO8F
330431 -             ..
330432 -            [On 080502 Kaiser lists Gastrografin as current medication
330433 -            prescribed for Millie's care. ref SDS 21 T38N
330434 -
330436 -  ..
330437 - Millie was crying and very upset today, when she returned from Kaiser
330438 - much later than expected.  CT tests normally take about 30 minutes in
330439 - the testing room.  Today it took over 3 hours.   She was actually gone
330440 - for 4 hours today.
330441 -
330442 -        [On 080718 CT test with Power Port failed, because the medical
330443 -        team failed to review and implement product liturature on
330444 -        correct usage, and which had been submitted to Kaiser 10 days
330445 -        prior to the procedure; wound up using an IV, and work took
330446 -        almost 2 hours. ref SDS 27 YG4K
330448 -  ..
330449 - Despite Millie's careful and thorough preparation this morning,
330450 - including drinking a lot of water, per above, ref SDS 0 XM30,
330451 - technicians had a lot of difficulty again making a needle penetration
330452 - to inject contrast medium for the test.  Today was worse than the last
330453 - CT test on 080212 when the technician made only 2 mistakes.
330454 - ref SDS 10 FP5H  Today, they made 3 mistakes, similar to experience on
330455 - 070930. ref SDS 5 5G5J  At that time, UCSF made adjustments to reduce
330456 - suffering by extending time between tests from 8 to 12 weeks in order
330457 - for Millie's arm to recover enough for CT test needle penetration to
330458 - inject contrast medium, reported on 071009. ref SDS 6 I48R  However,
330459 - on 080207 the doctor had to revert back to an 8 week schedule to test
330460 - for IBC relapse. ref SDS 9 GH5M
330462 -  ..
330463 - Only on the 4th needle penetration was the CT test injection of
330464 - contrast medium successful.  This was very painful and traumatic
330465 - experience.  Each attempt takes 20 to 30 minutes, because the
330466 - technician tries with various means to make blood flow, including
330467 - using saline flush.
330468 -
330469 -            [On 110429 1230 case study on similar problems at VA in
330470 -            Martinez, getting adequate blood flow through IV catheter,
330471 -            related to dehydration from heavy exercise and low water
330472 -            intake hours before medical care; solved by getting another
330473 -            nurse to complete work. ref SDS 31 SR8M
330475 -  ..
330476 - As before, today the technician ignored Millie's suggestion to make
330477 - the injection on the inner arm and below the elbow.  After 2 failed
330478 - attempts, the technician left the room to get help.  It took 20 or so
330479 - minutes for another technician to arrive.  Initially the second
330480 - technician also ignored Millie's suggestion.  She tried to make the
330481 - injection in a vein on the top of the hand.  After this failed, the
330482 - 4th needle penetraion was eventually successful getting blood to flow
330483 - at the location Millie originally suggested 90 minutes earlier.  The
330484 - technician was then able to inject contrast medium for the CT test
330485 -
330486 -        [On 080708 doctor accessed vein on top of right hand for IV to
330487 -        draw blood for test to verify INR sufficient to enable surgery;
330488 -        used local anesthetic that prevented pain, and used hand pump
330489 -        process to force blood draw from the vein. ref SDS 26 ME85
330491 -  ..
330492 - This was very painful because each needle puncture took about 20
330493 - minutes for the technician to push the needle around probing for a
330494 - place that would flow.  When there seemed to be some blood flow, the
330495 - technician had to determine it was sufficient for the injecting
330496 - contrast medium.  This was done by pressing the arm, pushing the
330497 - needle further into the arm.  Millie was asked to raise her arm, then
330498 - to raise the other arm, and to pump her hand in an effort to increase
330499 - blood flow.  When the technician finally determined the flow was
330500 - inadequate, the needle was removed, and another location was tried.
330501 - Over a two hour period, constant probing and pushing the needle into
330502 - multiple locations on the arm was painful and emotionally draining,
330503 - precisely the conditions which were intended to be avoided by
330504 - implanting the port catheter, explained at Kaiser on 040402.
330505 - ref SDS 3 V750
330507 -  ..
330508 - This was frustrating and stressful for the technicians, who are very
330509 - professional, but are not trained to use the port catheter that makes
330510 - injections fast and easy, which was the rationale for implanting the
330511 - port catheter explained by Rosalie at Kaiesr on 040402. ref SDS 3 V750
330513 -  ..
330514 - Continuing difficulty making needle punctures for CT test injections
330515 - causing serious injury to the patient reflects prior problems reported
330516 - at Kaiser on 040318. ref SDS 2 CO3G  At that time, the doctor
330517 - explained using a Port Catheter for IV injections and blood draws to
330518 - avoid trauma from difficulty making needle punctures for IV
330519 - injections, essential for patient care. ref SDS 2 RX9O  On 040402
330520 - Rosalie discussed advantages of implanting a port catheter.
330521 - ref SDS 3 V750  On 040419 a port catheter was implanted. ref SDS 4
330522 - PPSW  This solved the problems for nurses in the Infusion Clinic,
330523 - however, the port could not be used for CT test injections.  During
330524 - that time in 2004, Millie received CT tests only 2 - 3 CT tests per
330525 - year.  Her arm had time to recover from needle penetrations.  As noted
330526 - above, when Millie entered the clinical trial for care at UCSF, more
330527 - frequent CT testing on an 8 week schedule caused new problems, so the
330528 - doctor changed this to 12 weeks, per above. ref SDS 0 N074  Now even
330529 - the 12 week schedule has damaged Millie's arm to the point that
330530 - finding a vein for an IV injection is very difficult,
330532 -  ..
330533 - Millie said the technician today was afraid to use the port catheter
330534 - to avoid injuring Millie's arm with excessive needle penetrations.
330535 - Kaiser procedure does not allow using a port catheter for injecting CT
330536 - test contrast medium, because high pressure from the injection process
330537 - might damage the port catheter, causing serious damage to the patient.
330538 - Millie reported feeling no evident increased pressure during the
330539 - injection of CT contrast medium than is experienced when nurses in the
330540 - Infusion clinic inject chemotherapy medication.
330541 -
330542 -        [On 080428 Millie reported problems to primary care physician
330543 -        at Kaiser, and requested investigation to upgrade the port
330544 -        catheter to handle CT test contrast medium injections.
330545 -        ref SDS 17 1H6Y
330547 -         ..
330548 -        [On 080429 Kaiser checking on switching to a "Huber" needle
330549 -        to avoid problems making injections of contrast medium for
330550 -        CT tests. ref SDS 18 1H6Y
330552 -         ..
330553 -        [On 080430 letter to UCSF requests report on experience
330554 -        using this method to relieve problems from excessive needle
330555 -        penetrations for injecting contrast medium to perform CT
330556 -        tests. ref SDS 19 W65Q
330558 -         ..
330559 -        [On 080501 Brigid explained that CT test injections of contrast
330560 -        medium causes higher pressures on the port catheter, and so
330561 -        UCSF began installing only Power Ports designed for higher
330562 -        pressures. ref SDS 20 766K
330564 -         ..
330565 -        [On 080502 primary care physician sent a letter to surgeon
330566 -        at Kaiser investigating follow up surgery to upgrade
330567 -        Millie's port catheter implanted on 040419 to a "Power
330568 -        Port" for injecting CT test contrast medium in order to
330569 -        avoid further injury, pain, and suffering, ref SDS 21 VG5J;
330570 -        there is also consideration of using the existing port
330571 -        catheter by slowing the rate of injecting contrast medium
330572 -        for CT tests (point 2), if that is possible, which reduces
330573 -        risk of damaging the port from high pressure that occurs
330574 -        from CT test injections. ref SDS 21 847I
330576 -         ..
330577 -        [On 080508 Millie asks primary care physician about
330578 -        progress scheduling surgery to upgrade the port catheter
330579 -        to a Power Port for injecting contrast medium in time
330580 -        for the next CT test. ref SDS 22 GO8G
330582 -         ..
330583 -        [On 080520 Kaiser did not respond; Millie sent followed up
330584 -        letter asking Kaiser to coordinate with the Surgery
330585 -        department on expediting Power Port surgery, ref SDS 23
330586 -        GS8K, in time for next CT test expected in 4 weeks.
330587 -        ref SDS 23 TV4S
330589 -         ..
330590 -        [On 080523 Millie received a letter from Kaiser advising
330591 -        that the surgeon reports Kaiser can upgrade Millie's port
330592 -        catheter to a Power Port, and he made a referral for this
330593 -        work to be performed, ref SDS 24 MG6F; this will solve the
330594 -        problems reported on 080425 injecting contrast medium for
330595 -        CT tests.
330597 -         ..
330598 -        [On 080528 Millie notified the medical team at UCSF that Kaiser
330599 -        was making progress upgrading to a Power Port for solving
330600 -        problems injecting contrast medium for CT tests. ref SDS 25
330601 -        IJ6W
330603 -  ..
330604 - After the technicians finally completed the work, Millie left the
330605 - treatment room.  There were a lot of angry patients who were waiting
330606 - to get tested and were delayed because of difficulty with Millie's
330607 - test that took about 3 hours today for reasons presented above.
330608 - ref SDS 0 I76K
330610 -  ..
330611 - When Millie arrived home, there were 3 black and blue spots already
330612 - forming on her arm.  Mil wants to investigate how to improve CT test
330613 - injection process.  She recalls hearing about a new type of port
330614 - catheter that accomodates CT test injections better than the one
330615 - implanted by Doctor Riley-Paul on 040419. ref SDS 4 0001
330616 -
330617 -        [On 080428 Millie reported problems to primary care physician
330618 -        at Kaiser, and requested investigation to upgrade the port
330619 -        catheter to handle CT test contrast medium injections.
330620 -        ref SDS 17 1H6Y
330622 -         ..
330623 -        [On 080429 Kaiser checking on switching to a "Huber" needle
330624 -        to avoid problems making injections of contrast medium for
330625 -        CT tests. ref SDS 18 1H6Y
330627 -         ..
330628 -        [On 080430 letter to UCSF requests report on experience
330629 -        using this method to relieve problems from excessive needle
330630 -        penetrations for injecting contrast medium to perform CT
330631 -        tests. ref SDS 19 W65Q
330633 -         ..
330634 -        [On 080718 CT test with Power Port failed; wound up using an
330635 -        IV, and work took almost 2 hours. ref SDS 27 YG4K
330637 -         ..
330638 -        [On 080811 Kaiser in Walnut Creek discovers the CT Department
330639 -        at Kaiser in Oakland has experience using Power Port
330640 -        technology. ref SDS 28 L45M
330642 -         ..
330643 -        [On 080903 Kaiser schedules next test at Oakland CT Department
330644 -        to use the Power Port. ref SDS 29 IO4U
330646 -         ..
330647 -        [On 080911 test successfully performed using Power Port at
330648 -        Kaiser CT Department in Oakland. ref SDS 30 LK3R
330649 -
330650 -
330651 -
330652 -
330653 -
330654 -
330655 -
330656 -
3307 -