THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
S U M M A R Y
DIARY: April 23, 2009 08:30 AM Thursday;
Millie meeting at UCSF assess recovery IBC with radiation hyperthermia
and plan treatment of cancer as chronic disease.
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White Blood Cell Condition Blood Test Shows Too Low Doctor Johnson A
0403 - ..
0404 - Summary/Objective
040501 - Follow up ref SDS 43 0000. ref SDS 36 0000.
040507 - ..
0408 - Progress
040901 - Tara received Millie's letter on 090420 submitting an agenda for the
040902 - meeting today. ref SDS 66 8N5I She had reviewed prior correspondence
040903 - notifying the medical team of possible spread of IBC on the lower left
040904 - arm....
040906 - ..
040907 - 1. Red rash sprinkled on lower
040908 - left arm........................ 090331, ref SDS 55 Q69V
040910 - ..
040911 - 2. Doctor Hsu advises new red rash
040912 - on lower left arm likely IBC
040913 - recurrence...................... 090401, ref SDS 56 R24X
040915 - ..
040916 - 3. Millie's letter to medical reports
040917 - IBC worsening on left arm, and occurs
040918 - along a neat line at the perimeter
040919 - of area treated with radiation
040920 - and hyperthermia................ 090412, ref SDS 58 XN8J
040922 - ..
040923 - 4. Millie requests treatment next week
040924 - to prevent cancer from cascading
040925 - out of control.................. 090412, ref SDS 58 9S9Y
040926 - delaying treatment to mid-May
040927 - seems like a big
040928 - risk............................ 090412, ref SDS 58 9S8Y
040930 - ..
040931 - 5. Millie notifies medical team IBC
040932 - spreading; asks about getting
040933 - treatment of cancer as chronic
040934 - disease......................... 090415, ref SDS 60 KG8Q
040936 - ..
040937 - 6. Millie submits agenda for meeting at
040938 - UCSF on 090423 cites new IBC on lower
040939 - left arm; and, also, reports a vertical
040940 - line in the breastbone area of possible
040941 - IBC or continuing reaction to
040942 - radiation....................... 090420 ref SDS 66 MS5Q
040944 - ..
040945 - Tara did not receive the report on the lab at Kaiser for the blood
040946 - test on 090413 1330, ref SDS 59 OT8J, and she did not receive the
040947 - report from Kaiser for the CT test on 090413, which were requested
040948 - from Kaiser on 090415 0949, ref SDS 60 KG9R, and in a follow up letter
040949 - later in the afternoon on 090415 1424 reporting new symptoms of heavy
040950 - chest. ref SDS 61 JT7H
040952 - ..
040953 - Tara discussed briefly today Millie's report on 090415 of increased
040954 - breathing problems, ref SDS 61 GU8X, and the recent CT test on 090413
040955 - cited and transmitted with the letter dated 090420 2252 to the medical
040956 - team submitting the agenda for the meeting today. ref SDS 66 MS4U
040957 - Tara was pleased getting Millie's earlier letter on 090416 0010,
040958 - ref SDS 64 835R, submitting Doctor Johnson's letter the day before on
040959 - 090415 1642 reporting that Doctor Johnson reviewed scans for Millie's
040960 - CT test on 090413, and found minimal changes in the lungs, and which
040961 - would not be expected to cause respiratory problems, ref SDS 63 YO7M,
040962 - and further confirming telecon with Doctor Johnson on 090415 1519.
040963 - ref SDS 62 GT4M
040965 - ..
040966 - During the meeting today, Tara indicated Millie's respiratory
040967 - problems, reported on 090415, ref SDS 61 GU8X, require increased
040968 - scrutinty for cause and progression toward pneumonia and other lung
040969 - problem, considered in prior correspondence submitted by Doctor Hsu on
040970 - 090403 1324. ref SDS 57 Z66M
040972 - ..
040973 - Tara was further pleased today that, even though she did not have time
040974 - to click on the link to open Kaiser's radiology report for Millie's CT
040975 - test on 090413, submitted with Millie's letter on 090416 0010,
040976 - ref SDS 64 836R, Tara feels finding decreased lymphadenopathy in the
040977 - righ axillary is very good news, based on review in the record on
040978 - 090415 1610. ref SDS 63 4K5H
040980 - ..
040981 - Examination shows continuing recovery from radiation and hyperthermia
040982 - side effects. Tara smiled and was very pleased to see the large open
040983 - wound near the breastbone area, observed during examination on 090312,
040984 - ref SDS 42 YX9F, is still seeping blood and puss, which appears
040985 - somewhat different from recovery of other radiation blistering. Tara
040986 - feels that IBC has been substantially degraded in all treatment zones,
040987 - as noted in the letter to the medical team on 090420, ref SDS 66 MS4X,
040988 - and extending Tara's findings during the meeting on 090312.
040989 - ref SDS 42 YX9F Tara noted the "vertical line" of 3 or so slight
040990 - nodules in the breastbone area that seems to be healing slower than
040991 - surrounding tissue, and which was reported in the letter to the
040992 - medical team on 090420 2352. ref SDS 66 MS5Q
040994 - ..
040995 - [On 090423 2337 Millie letter reports favorable findings from
040996 - examination today. ref SDS 67 ZL6T
040998 - ..
040999 - Tara observed new and likely IBC occurring on the lower left arm,
041000 - first reported to the medical team on 090331. ref SDS 55 Q69V She
041001 - described this as light and sprinkled beginning below the lower edge
041002 - of radiation and hyperthermia treatment on the upper left arm. She
041003 - also noted there is as yet no thickness of skin, which indicates IBC
041004 - rash in beginning stages. Tara asked Millie to remove her wrist watch
041005 - to differentiate this new rash from any association with reaction to
041006 - metal or pressure from the band.
041008 - ..
041009 - Tara plans to discuss with Doctor Hsu new IBC on lower left arm, and
041010 - the nodules still in the breastbone area, which are mentioned in
041011 - Millie's letter to the medical team on 090420, and asking about
041012 - possible correlation with 20 point rise in cancer marker. ref SDS 66
041013 - MS5Q
041015 - [...below Doctor Hsu does not mention discussions with Tara on
041016 - IBC recurrence on left arm, and continuing messy nodules in
041017 - Millie's breastbone area. ref SDS 0 CP4J
041019 - ..
041020 - [On 090423 2337 Millie's letter to medical team reports Tara
041021 - plans to discuss with Doctor Hsu nodules in the breastbone
041022 - area. ref SDS 67 ZL7V
041024 - ..
041025 - [On 090609 Doctor Hsu advises there was a mistake performing
041026 - radiation in February and March at UCSF that missed treating
041027 - IBC in the breastbone area to the left of the right breast, and
041028 - this untreated IBC tumor may be causing problems in Millie's
041029 - lungs. ref SDS 72 TP9L
041031 - ..
041032 - After meeting with Tara, Millie met with Sara Schwab, the Practice
041033 - Manager for the Breast Care Clinic.
041035 - ..
041036 - Millie gave to Sara printed copies of reports for the CT test and the
041037 - lab work both done at Kaiser on 090413. Sara planned to submit these
041038 - documents to Tara for UCSF's medical chart that records results of the
041039 - meeting this morning.
041041 - ..
041042 - Sara said that Amanda Lawrence received documentation from Kaiser
041043 - showing Doctor Rugo can see Millie today. Sara agreed to submit this
041044 - documentation to Millie.
041046 - ..
041047 - Sara said that getting referral documentation from Kaiser is very
041048 - difficult. Sara advised that the UCSF Breast Care Clinic sees very
041049 - few patients on referral from Kaiser. She feels that Millie is
041050 - fortunate to have arranged for advanced care at UCSF on referral from
041051 - Kaiser. Millie's entitlement for care arises from Kaiser's duty to
041052 - mitigate damage caused by errors and omissions providing health care
041053 - for Millie, reviewed on 070927. ref SDS 4 WU6M
041057 - ..
0413 - 1315
041401 - In the afternoon, Doctor Hsu indicated he had not seen the report on
041402 - Millie's CT test at Kaiser on 090413. Doctor Hsu said he would obtain
041403 - the scan from Kaiser to compare with the test at UCSF on 090209 prior
041404 - to starting treatment with radiation and hyperthermia.
041406 - ..
041407 - We need the report on the CT test Doctor Hsu performed on 090209 to
041408 - layout radiation fields for the treatment plan.
041410 - ..
041411 - Doctor Hsu reported receiving the agenda for the meeting today in
041412 - Millie's letter on 090420. ref SDS 66 MS4X Doctor Hsu had reviewed
041413 - correspondence on Millie's care since the meeting on 090330, listed
041414 - above. ref SDS 0 TP9L
041416 - ..
041417 - Examination today follows up the emergency examination Millie needed
041418 - on 090330 to evaluate severe IBC side effects. ref SDS 54 L177
041420 - ..
041421 - The doctor concurred with Tara's examination this morning finding
041422 - progression of IBC on the lower left arm, per above. ref SDS 0 QR3M
041424 - ..
041425 - Doctor Hsu was pleased to see significant recovery today from
041426 - radiation side effects, compared to severe condition observed during
041427 - examinaton on 090330. ref SDS 54 9A66 The doctor further seemed to
041428 - say that examination today of radiation side effects not yet fully
041429 - recovered indicates Millie has about 90% recovery from IBC in treated
041430 - areas. He expects radiation and hypterthermia to continue treating
041431 - the remaining 10% of IBC infection for weeks and months ahead, as
041432 - explained during the meeting on 090312, ref SDS 42 F860, so that
041433 - Millie can expect full recovery from IBC in all areas treated by
041434 - radiation and hyperthermia that began on 090219 and ended on 090317.
041436 - [On 090604 1021 Millie commends medical team for cancer
041437 - marker dropping 30 points in 2 weeks after rising 70 points
041438 - in 6 weeks, demonstrates continuing recovery from radiation
041439 - treatments that ended on 090317. ref SDS 70 07AD
041441 - ..
041442 - [On 090617 1737 nodules of ground glass opacities, atelectasis
041443 - and bronchiectasis, and biapical scarring in lungs reported new
041444 - findings from CT test on 090612, align with Doctor Hsu's report
041445 - today that radiation has continued effects for months after
041446 - ending treatment. ref SDS 73 RV78
041448 - ..
041449 - [On 091112 0930 Kaiser's medical chart for Millie shows CT test
041450 - on 090919 found ground glass opacity nodues resolved in some
041451 - areas of the lungs, and new ones appear in other areas,
041452 - ref SDS 74 WY8J, reflecting Doctor Hsu's report that radiation
041453 - effects last for months after ending treatment, per above.
041454 - ref SDS 0 YN5N
041456 - ..
041457 - The doctor did not mention during the meeting getting a call from Tara
041458 - about nodules in breastbone area, which Tara indicated this morning
041459 - she would discuss with Doctor Hsu, per above, ref SDS 0 R15K, and
041460 - which were cited in Millie's letter to the medical team on 090420
041461 - 2352, asking about possible correlation with 20 point rise in the
041462 - cancer marker. ref SDS 66 MS5Q
041464 - ..
041465 - The doctor advised again that nodules now seeping blood and oozing
041466 - puss in the breastbone area are reaction to radiation. He said that
041467 - even if there is still some IBC in the breastbone area this cancer
041468 - will continue to be recover from effects of radiation and hyperthermia
041469 - that kills cancer cells for months after ending treatments on 090317;
041470 - he noted again that everything will eventually heal, including the
041471 - breastbone area, as other areas have recovered shown by examination
041472 - today.
041474 - ..
041475 - [On 090423 2337 letter to medical team reports Doctor Hsu's
041476 - examination finds uncertain about nodules in vertical line in
041477 - breastbone, and expects whether or not IBC Millie will have
041478 - full recovery. ref SDS 67 ZL9S
041480 - ..
041481 - [On 090609 0900 Doctor Hsu advised there was a mistake laying
041482 - out radiation treatment zones which caused a vertical area of
041483 - IBC in Millie's breastbone to not get treated, and so bleeding
041484 - open sores with puss flowing is untreated IBC, and not a
041485 - reaction to radiation treatment. ref SDS 72 W65W
041487 - ..
041488 - Millie asked about doing a biopsy to test for cancer in the breastbone
041489 - area?
041491 - [On 090510 1953 Millie reports worsening rash and open sore in
041492 - the breastbone area, ref SDS 68 LJ5T, and asks if this could be
041493 - IBC that was somehow not treated with radiation, ref SDS 68
041494 - FJ3G; Millie therefore asks for biopsy again for early
041495 - diagnosis and treatment including surgery and/or radiation to
041496 - prevent IBC from getting out of control. ref SDS 68 LJ5X
041498 - ..
041499 - Doctor Hsu explained that biopsy, or any wound, even a scratch must be
041500 - avoided because Millie's skin will have difficulty healing. The
041501 - normal flow of nutrients to the skin has been degraded in areas
041502 - treated with radiation and hyperthermia. He explained that even if
041503 - nodularity observed today in the breastbone area is IBC, radiation and
041504 - hyperthermia treatments during February and March, which ended on
041505 - 090317, will kill the cancer cells over the next month or so, because
041506 - nothing can grow in the skin on Millie's left side that received the
041507 - amount of radiation and hyperthermia Millie was given during February
041508 - and March, ending on 090317. Doctor Hsu emphasized that cancer will
041509 - never return to the areas he treated on Millie's left side with
041510 - radiation and hyperthermia.
041512 - ..
041513 - This was very welcome news learning that IBC, which has been a problem
041514 - for Millie's chest the past 6 years, and became very concentrated in
041515 - January and February, has at last been eliminated.
041517 - [On 090423 2337 letter to medical team reports Doctor Hsu's
041518 - favorable report that IBC cannot recur in treated areas,
041519 - because nothing can grow in treated areas. ref SDS 67 ZL9V
041521 - ..
041522 - [On 090522 1351 Millie asks the medical team how hyperthermia,
041523 - radiation, and Doxil which has been very effective fit in the
041524 - treatment plan, and Millie confirms choice, absent medical
041525 - advice, to rely on care with these modalities to recover from
041526 - the 8th relapse of cancer, which were effective in Feb and Mar
041527 - recovering from 7th relapse of cancer. ref SDS 69 2T4Y
041529 - ..
041530 - [On 090522 1351 Millie notifies medical team that absent
041531 - medical advice, she chooses treatment with hyperthermia and
041532 - radiation and Doxil or other appropriate agent, previously
041533 - prescribed by Doctor Rugo at UCSF Cancer Center, and
041534 - effective during Feb - Mar recovering from 7th relapse of
041535 - cancer. ref SDS 69 2T5R
041537 - ..
041538 - [On 090609 Doctor Hsu advises there was a mistake performing
041539 - radiation in February and March at UCSF that missed treating
041540 - IBC in the breastbone area to the left of the right breast, and
041541 - this untreated IBC tumor may be causing problems in Millie's
041542 - lungs. ref SDS 72 TP9L
041544 - ..
041545 - Like Tara this morning, Doctor Hsu did not discuss the 20 point
041546 - increase of CA 15-3 271 for the lab at Kaiser on 090413, ref SDS 59
041547 - PQTQ, compared with CA 15-3 251 for the blood draw on 090317 and
041548 - posted to the test on 090309. ref SDS 37 PQTQ
041550 - ..
041551 - Doctor Hsu gave a double thumbs up approving Millie to go on vacation,
041552 - and did not identify anything Millie should or should not do in order
041553 - to slow progression of IBC disease.
041555 - ..
041556 - Doctor Hsu plans to discuss Millie's recurrence of IBC on the lower
041557 - left arm with Doctor Rugo for designing a "maintenance program." This
041558 - aligns with Doctor Johnson's planning at Kaiser for UCSF to treat
041559 - Millie's cancer as a "chronic disease," cited in Millie's letter to
041560 - the medical team on 090326, ref SDS 53 DW4U, and referencing Millie's
041561 - meeting with Doctor Johnson on 090325. ref SDS 51 L15M
041563 - ..
041564 - Today, Doctor Hsu advised that radiation treatment has powerful, but
041565 - limited use, like a "bullet." He can treat new IBC sites, as observed
041566 - today on the lower left arm, only twice, due to limited tolerance for
041567 - radiation. In effect he has a "gun" loaded with only "2-bullets"
041568 - which must be deployed with maximum effect. On the other hand,
041569 - hyperthermia can be used as often as needed without adverse side
041570 - effects, reported on 090312 0800. ref SDS 42 F973
041572 - ..
041573 - Doctor Hsu's strategy is to withold these "2-bullets" at this time,
041574 - while Doctor Rugo experiments to find another systemic treatment like,
041575 - cetuximab and Carboplatin, that was effective for Millie during
041576 - 2007-2008. The doctor explained today that delaying treatment with
041577 - radiation and hyperthermia ensures Millie has a proven solution
041578 - available in reserve until and unless IBC becomes more serious on the
041579 - left arm, as seen today, or possibly occurring elsewhere. This fits
041580 - Doctor Rugo's strategy waiting until IBC became very serious to
041581 - prescribe hyperthermia and radiation on 090129, and reported on
041582 - 090130. ref SDS 22 4S8O
041584 - ..
041585 - Delaying treatment and holding effective care in reserve is the
041586 - strategy Doctor Johnson used at Kaiser during 2003. At that time, on
041587 - 030710 Doctor Johnson described standard of care for oncology delays
041588 - treatment until symptoms are very severe, ref SDS 1 FZ55, in order to
041589 - stretch out treatments that prolong benefits of powerful chemotherapy
041590 - drugs. ref SDS 1 L35L A year later on 040318 Doctor Johnson explained
041591 - clinical trials are Kaiser standard of care for stretching out use of
041592 - proven chemotherapy drugs.