THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
S U M M A R Y
DIARY: July 16, 2009 09:06 PM Thursday;
Millie letter to medical team on results meeting at UCSF to recover from
8th relapse of cancer.
Click here to comment!
White Blood Cell Condition Blood Test Shows Too Low Doctor Johnson A
0403 - ..
0404 - Summary/Objective
040501 - Follow up ref SDS 73 0000. ref SDS 70 0000.
040508 - ..
0408 - Background
040901 - Background leading up to meeting at UCSF earlier today is listed in
040902 - the record on 090715, reporting Millie's letter submitting the agenda
040903 - for the meeting. ref SDS 72 QM5O
040905 - ..
040906 - On 090716 Millie met with the medical team at UCSF today; Tara Lacy
040907 - made findings of IBC progression, based primarily on reduced
040908 - breathing. ref SDS 73 GM50 As a result, Tara contacted Doctor Rugo
040909 - who was traveling. Tara advised that Doctor Rugo ended treatment with
040910 - MPA due to concerns about side effects of possible PE based on
040911 - Millie's difficult brathing.
040913 - ..
040914 - On 090716 2106 this evening about 2010, Tara called Millie at home.
040915 - She advised that Doctor Rugo does not have more treatments targeted
040916 - for Millie's patient profile. The doctor expects that in September
040917 - Millie can start treatment with PARP, but that regimen is not yet
040918 - ready for delivery to patients. Doctor Rugo prescribes Millie get
040919 - Gemzar, and proposes that Kaiser provide this treatment, because the
040920 - cost to UCSF would be less than UCSF can provide the treatment.
040922 - ..
040923 - Millie sent the following letter to the medical team confirming events
040924 - of the day...
040926 - 1. Subject: UCSF Meeting Finds Possible Progression May Change Treatments, Order CT, INR Elevated
040927 - Date: Thu, 16 Jul 2009 21:38:46 -0700
040941 - ..
040942 - 3. Confirming understandings from meeting with Tara and Mike, and
040943 - Lena, a new coordinator observing and assisting today [and
040944 - based on agenda submitted to the medical team yesterday on
040945 - 090715 0224. ref SDS 72 SY5H].
040947 - ..
040948 - 4. INR 3.5 in the labs today on 090716 0810 in the Infusion Clinic
040949 - at UCSF. Elevated INR reflects increased bleeding during
040950 - biopsy performed today by Doctor Amara Malik, and for the
040951 - purpose of the MPA study protocol. Doctor Malik did
040952 - outstanding work suturing the wound to avoid bleeding. On
040953 - 090616 wound from the initial study biopsy was dressed with a
040954 - steri-strip, rather than stitches, because at that time there
040955 - was minimal bleeding.
040957 - ..
040958 - 5. By copy notify Gloria in the Kaiser Coagulation Control
040959 - Department. The only changes in medication have been starting
040960 - daily MPA treatment for cancer begun on 090616, and starting
040961 - Robitussin with codine to control coughing prescribed on 090702
040962 - by Jean Anne in the UCSF Triage Department. I have taken very
040963 - little Robitussin.
040965 - ..
040966 - 6. Tara said to stop taking MPA today due to progression of
040967 - disease observed during the examination. UCSF withheld MPA
040968 - pills for the 2nd cycle, pending review by Doctor Rugo, who was
040969 - out of town today.
040971 - ..
040972 - This conflicts with procedure and practice at Kaiser that typically
040973 - strives to provide 2 cycles to fully evaluate effects of new treatment
040974 - in Millie's case.
040976 - ..
040977 - Millie's letter to medical team continues...
040979 - 7. Tara described findings of IBC spreading on my left arm,
040980 - especially the tricep, but as well surrounding the lower left
040981 - arm. IBC has spread wrapping further around the left side
040982 - toward the back. Tara provided guidance to reduce bleeding of
040983 - the untreated vertical line of IBC on the breastbone.
040985 - ..
040986 - 8. Thanks very much to Tara for presenting strong concern today
040987 - during the meeting about rising breathing problems and cough,
040988 - reported to the medical team the past 2 months. I did not
040989 - cough during the meeting, but Tara observed that walking from
040990 - the lobby to the examination room, and simply sitting and
040991 - talking cause loss of breath. Tara had me walk through the
040992 - hallway in the Breast Care Clinic and attached to a diagnostic
040993 - machine. She was pleased that my so2 [oxygen] stayed steady at
040994 - about 96. Tara also noted my pulse did not rise above 100,
040995 - which she reported occurs with some patients doing this test.
040997 - ..
040998 - 9. Tara is concerned loss of breath symptoms may indicate another
040999 - pulmonary embolism. The first PE discovered by CT test
041000 - reported at Kaiser on 041103, after months of rising symptoms,
041001 - and so I started Coumadin; and, the 2nd PE was on 060930, after
041002 - being off Coumadin since 051007.
041004 - ..
041005 - 10. Tara also cited possibility that cancer in the lungs can cause
041006 - my symptoms, previously cited by Doctor Hsu on 090609.
041007 - ref SDS 65 EK8J
041009 - ..
041010 - 11. Tara examined and discussed tightness on the left side, which
041011 - Doctor Hsu asked about on 090701, saying he could provide
041012 - treatment. ref SDS 71 SF8I [this was presented in the agenda
041013 - for the meeting today in Millie's letter to the medical team on
041014 - 090715 0224. ref SDS 72 0I9X]
041016 - ..
041017 - 12. Initially, Tara proposed I wait and/or return to UCSF this
041018 - afternoon to meet with you in order to expedite starting
041019 - treatment of advancing symptoms. Uncertainty about your
041020 - schedule today, because you were in transit flying back to town
041021 - from a trip, resulted in plans for you to call me later today
041022 - at your convenience to discuss treatment plans, including
041023 - requirements to order a CT test for PE and/or cancer.
041025 - ..
041026 - 13. Good news is my blood counts are the highest in 4 years, so I
041027 - am ready to move forward.
041029 - ..
041030 - 14. Tara just called at 2010 this evening, as planned.
041032 - ..
041033 - 15. I am grateful for her putting in extra time. Tara related that
041034 - she met with you this afternoon. You evidently feel that
041035 - spread of IBC [...which conflicts with record submitted in
041036 - Millie's letter to the medical team to guide review today,
041037 - reported on 090715 0224. ref SDS 72 0I4Y...], and continuing
041038 - breathing problems [... caused by UCSF radiation mistakes
041039 - reported by Doctor Hsu on 090609, ref SDS 65 R24G, and which
041040 - Tara reported during examination today at UCSF finding Millie
041041 - suffers increasing breathing problems, reflect symptoms of
041042 - pulmonary embolism, which is a rare side effect of MPA....]
041043 - signal progression, and so I must end treatment with MPA. Tara
041044 - indicated the only treatment you feel can treat my patient
041045 - profile is Gemzar [...which conflicts with Kaiser Oncology
041046 - Pharmacy report that Gemzar will not be effective for Millie's
041047 - patient profile, shown on 090601 0818, ref SDS 63 JH4K, and
041048 - will cause severe side effects, including infection, and even
041049 - death, ref SDS 63 FR8L...] at least until September, when a
041050 - study will open for PARP. You mentioned on 090616 that
041051 - sponsors at UC Davis encountered delays launching the PARP
041052 - study. After discussing my case with Tara, you sent a letter
041053 - to Doctor Johnson asking him to call you on arranging Gemzar
041054 - treatment for me at Kaiser [...Tara indicated in the call that
041055 - Doctor Rugo feels Kaiser can provide Gemzar treatment at less
041056 - cost than at UCSF, so getting treatment at Kaiser with Gemzar
041057 - saves UCSF money on treating Millie to recover from UCSF
041058 - medical mistakes that caused advance of cancer, and lung
041059 - problems...].
041061 - [On 090725 2017 Millie notified Doctor Johnson to submit
041062 - copy of Doctor Rugo's letter modifying UCSF's treatment
041063 - plan for Millie to start treatment at UCSF in September,
041064 - rather than immediately after ending MPA. ref SDS 74 T64P
041066 - ..
041067 - [On 090909 Doctor Johnson advised that his schedule had
041068 - cleared to have enough time for reviewing treatment options
041069 - submitted on 090326, and providing analysis comparing
041070 - trade-offs in order to prescribe treatment with the best
041071 - chance of being effective. ref SDS 75 VF60
041073 - ..
041074 - [On 090922 0028 requests guidance from Doctor Rugo on
041075 - Kaiser's recommendation to continue Gemzar, which was
041076 - prescribed by UCSF for performance at Kaiser to mitigate
041077 - damages recovering from medical mistakes getting radiation
041078 - services from UCSF on referral from Kaiser. ref SDS 76 NW6P
041080 - ..
041081 - [On 090922 0028 Millie asks medical team about progress
041082 - starting PARP, and review of other targeted therapies.
041083 - ref SDS 76 NW6S
041085 - ..
041086 - [On 091027 0830 Doctor Johnson disclosed that there still
041087 - has not been enough time to review follow on treatments for
041088 - Millie, and that he has not heard from Doctor Rugo on
041089 - UCSF's progress starting the PARP protocol. ref SDS 77 GN5G
041091 - ..
041092 - [On 091112 0930 Kaiser medical chart reports Millie's CT
041093 - test on 090919 to evaluate painful breathing that required
041094 - treatment in the Emergency Department, and recovery in the
041095 - hospital for a week, shows no evidence of pulmonary
041096 - embolism, ref SDS 78 RU6U; the test shows ground glass
041097 - opacities have reduced in one area of the lungs, and
041098 - increased in another, reflecting continuing injury from
041099 - radiation treatments Millie received at UCSF. ref SDS 78
041100 - OY8J
041102 - ..
041103 - [On 100112 0830 Doctor Johnson reviews published guidance
041104 - on 2nd opinion PARP therapy targeted to treat Millie's
041105 - cancer with triple negavie patient profile. ref SDS 79 N586
041107 - ..
041108 - [On 100606 2314 Doctor Johnson reported that Doctor Rugo
041109 - has still not returned his call from Kaiser requesting
041110 - treatment plan for Millie to recover from UCSF medical
041111 - mistakes. ref SDS 80 S66O
041113 - ..
041114 - 16. I explained to Tara this evening that Doctor Johnson is on
041115 - vacation for a few weeks. I received an "Out of office" reply
041116 - from him yesterday, when the agenda was submitted for the
041117 - meeting at UCSF today. Tara said you did not get an "Out of
041118 - Office" response today, so Doctor Johnson may have returned
041119 - early, or he is now picking up email while traveling.
041121 - ..
041122 - 17. Tara indicated this evening, she will follow up on Monday to
041123 - expedite my next treatment. Cross agency coordination between
041124 - Kaiser and UCSF has been difficult.
041126 - ..
041127 - 18. In theory, I should be able to start treatment right away,
041128 - since Doctor Johnson set this up to start on 090611. Tara
041129 - indicated today that you conclude another CT test is not
041130 - needed, as Tara proposed today, because progression is certain.
041132 - ..
041133 - 19. How will the "blood thinner" issue be addressed? Kaiser's
041134 - guidance on Gemzar received on 090605 says to avoid blood
041135 - thinners. ref SDS 64 745O
041137 - ..
041138 - 20. Can Coumadin be paused or reduced?? Since INR 3.5 was high
041139 - today, it has to be reduced anyway.
041141 - ..
041142 - 21. Thanks very much to you and Doctor Johnson for excellent
041143 - support, and especially to Tara for calling this evening.
041144 - Having some some idea of what's going to happen is a big
041145 - relief.
041147 - ..
041148 - 22. Please keep me posted.