CONTACTS 

SUBJECTS
White Blood Cell Condition Blood Test Shows Too Low Doctor Johnson A

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 69 0000. ref SDS 68 0000.
040502 -
040503 -
040504 -
040505 -
040507 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Doctor Rugo was traveling today, and so did not attend the meeting
040902 - with Tara.  Mike Pelayo assisted, with Marialena (Lena) Horta
040903 - observing.
040905 -  ..
040906 - Tara had reviewed communication to prepare for the meeting today.
040907 -
040908 -
040909 -
040910 -
040911 -
040913 -  ..
040914 - Tara left the meeting at one point to call the doctor on the cell
040915 - phone.  She later said the doctor was in an airplane returning to San
040916 - Francisco, and so could not be reached by phone.
040917 -
040918 -
040919 -   *********************************************
040920 -
040921 -          Following content is from letter to the team on results of
040922 -          the meeting.
040924 -  ..
040925 - INR 3.5 in the labs today on 090716 0810 in the Infusion Clinic at
040926 - UCSF.  Elevated INR reflects increased bleeding during biopsy
040927 - performed today by Doctor Amara Malik, and for the purpose of the MPA
040928 - study protocol.  Doctor Malik did outstanding work suturing the wound
040929 - to avoid bleeding.  On 090616 wound from the initial study biopsy was
040930 - dressed with a steri-strip, rather than stitches, because at that time
040931 - there was minimal bleeding.
040933 -  ..
040934 - By copy notify Gloria in the Kaiser Coagulation Control Department.
040935 - The only changes in medication have been starting daily MPA treatment
040936 - for cancer begun on 090616, and starting Robitussin with codine to
040937 - control coughing prescribed on 090702 by Jean Anne in the UCSF Triage
040938 - Department.  I have taken very little Robitussin.
040940 -  ..
040941 - Tara said to stop taking MPA today due to progression of disease
040942 - observed during the examination.  UCSF withheld MPA pills for the 2nd
040943 - cycle, pending review by Doctor Rugo, who was out of town today.
040945 -  ..
040946 - Tara described findings of IBC spreading on the left arm, especially
040947 - the tricep, but as well surrounding the lower left arm.  IBC has
040948 - spread wrapping further around the left side toward the back.  Tara
040949 - provided guidance to reduce bleeding of the untreated IBC on the
040950 - breastbone.
040952 -  ..
040953 - Thanks very much to Tara for presenting strong concern today during
040954 - the meeting about rising breathing problems and cough, reported to the
040955 - medical team the past 2 months.  I did not cough during the meeting,
040956 - but Tara observed that walking from the lobby to the examination room,
040957 - and simply sitting and talking cause loss of breath.  Tara had me walk
040958 - through the hallway in the Breast Care Clinic and attached to a
040959 - diagnostic machine.  She was pleased that my so2 stayed steady at
040960 - about 96.  Tara also noted my pulse did not rise above 100, which she
040961 - reported occurs with some patients doing this test.
040963 -  ..
040964 - Tara is concerned loss of breath symptoms may indicate another
040965 - pulmonary embolism.  The first PE discovered by CT test reported at
040966 - Kaiser on 041103, after months of rising symptoms, and so I started
040967 - Coumadin; and, the 2nd PE was on 060930, after being off Coumadin
040968 - since 051007.
040970 -  ..
040971 - Tara also cited possibility that cancer in the lungs can cause my
040972 - symptoms, previously cited by Doctor Hsu on 090609.
040974 -  ..
040975 - Tara examined and discussed tightness on the left side, which Doctor
040976 - Hsu asked about on 090701, saying he could provide treatment.
040977 - ref SDS 70 4P51
040979 -  ..
040980 - Initially, Tara proposed I wait and/or return to UCSF this afternoon
040981 - to meet with you in order to expedite starting treatment of advancing
040982 - symptoms.  Uncertainty about your schedule today, because you were in
040983 - transit flying back to town from a trip, resulted in plans for you or
040984 - Tara to call me later today at your convenience to discuss treatment
040985 - plans, including requirements to order a CT test for PE and/or cancer.
040987 -  ..
040988 - Good news is my blood counts are the highest in 4 years, so I am ready
040989 - to move forward.
040991 -  ..
040992 - Tara just called at 2010 this evening, as planned.
040994 -  ..
040995 - I am grateful for her putting in extra time.
040997 -  ..
040998 - Tara related that she met with you this afternoon.  You evidently feel
040999 - that spread of IBC and continuing breathing problems signal
041000 - progression, and so I must end treatment with MPA.  Tara indicated the
041001 - only treatment you feel can treat my patient profile is Gemzar, at
041002 - least until September, when a study will open for PARP.  You mentioned
041003 - on 090616 that sponsors at UC Davis encountered delays launching the
041004 - PARP study.  After discussing my case with Tara, you sent a letter to
041005 - Doctor Johnson asking him to call you on arranging Gemzar treatment
041006 - for me at Kaiser.
041008 -  ..
041009 - I explained to Tara this evening that Doctor Johnson is on vacation
041010 - for a few weeks.  I received an "Out of office" reply from him
041011 - yesterday when the agenda was submitted for the meeting at UCSF today.
041012 - Tara said you did not get an "Out of Office" response today, so Doctor
041013 - Johnson may have returned early, or he is now picking up email while
041014 - traveling.
041016 -  ..
041017 - Tara indicated this evening, she will follow up on Monday to expedite
041018 - my next treatment.  Cross agency coordination between Kaiser and UCSF
041019 - has been difficult.
041021 -  ..
041022 - In theory, I should be able to start treatment right away, since
041023 - Doctor Johnson set this up to start on 090611.  Tara indicated today
041024 - that you conclude another CT test is not needed, as Tara proposed
041025 - today, because progression is certain.
041027 -  ..
041028 - How will the "blood thinner" issue be addressed?  Kaiser's guidance on
041029 - Gemzar received on 090605 says to avoid blood thinners. ref SDS 63
041030 - 745O
041032 -  ..
041033 - Can Coumadin be paused or reduced??  Since INR 3.5 was high today, it
041034 - has to be reduced anyway.
041036 -  ..
041037 - Thanks very much to you and Doctor Johnson for excellent support, and
041038 - especially to Tara for calling this evening.  Having some idea of
041039 - what's going to happen is a big relief.
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