THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
rodwelch@pacbell.net


S U M M A R Y


DIARY: December 18, 2008 06:22 PM Thursday; Rod Welch

Millie letter to medical team on understandings from meeting today at UCSF.

1...Summary/Objective


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CONTACTS 

SUBJECTS
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0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 13 0000, ref SDS 10 0000.
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie met this morning on 081218 with the medical team at UCSF to
040902 - review progress, ref SDS 13 5G5H, based on the agenda submitted the
040903 - day before on 081217. ref SDS 10 VZ5I
040905 -  ..
040906 - This afternoon, Millie submitted a letter confirming understandings on
040907 - changes in treatment, and planning for evaluation further adjustments
040908 - based on results of testing.  Copies went to primary care physician at
040909 - Kaiser, the Coumadin Treatment case manager at Kaiser, and to Doctor
040910 - Stritter who asked on 081018 to be notified of Millie's progress as
040911 - part of the doctor's research on cutting edge treatments. ref SDS 4
040912 - 1Y4G
040914 -             ..
040915 -            [On 081219 Millie sent another letter to Kaiser only that
040916 -            complements the letter today in order to clarify planning
040917 -            options for adjusting treatments to maintain recovery, with
040918 -            less side effects. ref SDS 16 SU8R
040920 -  ..
040921 - Millie's letter says...
040922 -
040923 -    1.  Subject: Meeting UCSF Dec 18th Agenda Meeting at Kaiser Dec 19th
040924 -        Date: Thu, 18 Dec 2008 18:36:07 -0800
040937 -         ..
040938 -    2.  This confirms understandings from meeting with the medical team
040939 -        at UCSF this morning at 1000. ref SDS 13 0001
040941 -         ..
040942 -    3.  Tara made findings of substantial improvement recovering from
040943 -        the 5th relapse of IBC [as reported in Millie's letter to the
040944 -        medical team on 081217 for preparing to meet, ref SDS 10 YJ4V].
040945 -        Rash intensity has subsided, including the upper left arm that
040946 -        has been a major problem in recent months.
040948 -         ..
040949 -    4.  Nodules in the breastbone area have reduced in size and color
040950 -        [as reported in Millie's letter to the medical team on 081217
040951 -        for preparing to meet, ref SDS 10 YJ5V].
040953 -         ..
040954 -    5.  Tara palpated reduced size of the node in the left
040955 -        supraclavicular, and could identify no nodes in the right
040956 -        supraclavicular consistent with examinations the past 7 years.
040958 -         ..
040959 -    6.  Doctor Rugo visited with the team and concurred examination
040960 -        findings show significant improvement.
040961 -
040962 -            [On 081219 the primary care physician explained that rapid
040963 -            recovery with treatment killing many cancer cells can cause
040964 -            release of CA 15-3 protien which in turn creates a
040965 -            short-term rise of cancer marker that conveys false
040966 -            impression of rising cancer, when patient is actually
040967 -            recovering rapidly, ref SDS 17 YK4I, reported in Millie's
040968 -            case in the letter on 081217, ref SDS 10 YJ4V, and later
040969 -            observed during examination at UCSF on 081218, ref SDS 13
040970 -            VD4F, and with similar findings reported again at Kaiser
040971 -            the next day on 081219. ref SDS 17 3L9L
040973 -             ..
040974 -            [On 081230 0109 Millie's letter to medical team reports IBC
040975 -            seemed to significantly increase on 081224 and 081225, then
040976 -            seemed to improve somewhat. ref SDS 21 JV5M
040978 -             ..
040979 -            [On 090109 0027 examination finds significant relapse of
040980 -            IBC worsening. ref SDS 22 UE6R
040982 -         ..
040983 -    7.  CBC Blood counts in the test today at UCSF continue to suffer
040984 -        substandard levels, e.g., NEUTS 0.74 and platelets 67.  Most
040985 -        all CBC counts are below targets. ref SDS 12 YN8O
040987 -         ..
040988 -    8.  By copy notifying Gloria at Kaiser's Coagulation Treatment
040989 -        Clinic that INR 2.8. ref SDS 12 PU7Y
040990 -
040991 -            [On 081219 Millie received letter from Gloria presenting
040992 -            prescription for Coumadin. ref SDS 18 Z68L
040994 -         ..
040995 -    9.  Also reported nosebleed today [during meeting at UCSF,
040996 -        ref SDS 13 WS8O, and presented in patient history on side
040997 -        effects of sunitinib, ref SDS 11 ZF5F], attributed during the
040998 -        meeting to low platelets [67 reported for labs at Kaiser on
040999 -        081210, ref SDS 8 DM6J, cited in Millie's letter to the medical
041000 -        team on 081211, ref SDS 9 S28P, reported in follow up labs at
041001 -        Kaiser on 081212 cited in the letter on 081217, ref SDS 10
041002 -        YJ4S, submitting the agenda for meeting yesterday, and again in
041003 -        the lab at UCSF yesterday on 081218 showing platelets 67,
041004 -        ref SDS 12 7Z6N], along with low energy i.e., rising chronic
041005 -        fatigue under the current treatment regimen [discussed with the
041006 -        medical team at UCSF yesterday on 081218, ref SDS 13 QW7H,
041007 -        review issues presented in Millie's letter yesterday on 081217
041008 -        submitted for the medical team to prepare for the meeting,
041009 -        ref SDS 10 YJ6R].
041011 -         ..
041012 -   10.  Doctor Rugo addressed these conditions by pausing all treatment
041013 -        for 1 week until 081226. ref SDS 13 QW49  This provides time
041014 -        for bone marrow to replenish blood counts [explained previously
041015 -        at Kaiser on 030606. ref SDS 1 TT3G, reviewed again at Kaiser
041016 -        on 040614, ref SDS 2 6T7F, and discussed at UCSF on 070301,
041017 -        ref SDS 3 D24M]
041019 -  ..
041020 - Changing treatment to reduce side effects so that treating cancer can
041021 - be tolerated responds to Millie's letter to the medical team on
041022 - 081202, ref SDS 7 AT6U, and to the more recent letter sent yesterday
041023 - on 081217 to prepare for the meeting today. ref SDS 10 YJ6R
041024 -
041025 -            [On 081219 1038 Millie's second letter to Kaiser clarifies
041026 -            agenda for meeting with primary care physician to discuss
041027 -            alternatives for changing the treatment plan to reduce side
041028 -            effects, including recent chronic low blood counts.
041029 -            ref SDS 16 SU9Q
041031 -             ..
041032 -            [On 081219 1140 primary care physician concurs UCSF order
041033 -            to pause treatments, ref SDS 17 JK7H, due to rising
041034 -            cytopenia, including pancytopenia from expanded low blood
041035 -            counts that risks fatal infection. ref SDS 17 LS6K
041037 -  ..
041038 - Millie's letter to the medical team continues...
041039 -
041040 -   11.  Treatment was ended entirely with Methotrexate. [Millie feels
041041 -        this will be a big help reducing side effects of ill feelings
041042 -        reported the past few weeks, including today. ref SDS 11 E38H
041043 -
041044 -            [On 081219 Millie sent another letter to Kaiser only that
041045 -            complements the letter today in order to clarify planning
041046 -            options for adjusting treatments to maintain recovery, with
041047 -            less side effects. ref SDS 16 SU8R
041049 -         ..
041050 -   12.  There was consideration to end treatment with cyclophosphamide
041051 -        and to reduce sunitinib from 37.5 mg to 25 mg per day.  Upon
041052 -        discussion, treatment with cyclophosphamide was continued at
041053 -        prescribed strength, 50 mg per day, beginning next week on
041054 -        081226.
041055 -
041056 -            [On 081223 Millie's letter to medical team commends Doctor
041057 -            Rugo for engineering recovery from 5th relapse of
041058 -            Inflammatory Breast Cancer (IBC) with sunitinib,
041059 -            ref SDS 19 BV4T; Millie cited discussion with Doctor
041060 -            Johnson at Kaiser today on 081219 explaining competing
041061 -            values of patient health and getting test data, ref SDS 19
041062 -            BV6R; Millie advised the medical team of willingness to
041063 -            optimize recovery by maintaining sunitinib dose amount that
041064 -            has been effective, and to reduce dose or eliminate
041065 -            treatment with cyclophosphamide that may not be effective,
041066 -            and which may be causing severe adverse chemotherapy side
041067 -            effects that prevent Millie from getting sufficient
041068 -            treatment with sunitinib to continue recovery for cancer.
041069 -            ref SDS 19 BW3V
041071 -         ..
041072 -   13.  I currently have some cyclophosphamide on hand, and the
041073 -        prescription permits several refills, so I can get additional
041074 -        drugs at Kaiser without additional prescription.
041076 -         ..
041077 -   14.  Another blood test is needed at Kaiser next week in the morning
041078 -        on 081226. ref SDS 13 BQ8F
041079 -
041080 -            [On 081219 primary care physician at Kaiser orders blood
041081 -            test on 081226 to implement UCSF work plan. ref SDS 17 3L9L
041083 -         ..
041084 -   15.  If NEUTS are below 1.250, then sunitinib can be reduced to 25
041085 -        mg per day.  Otherwise, sunitinib will continue at the original
041086 -        dose of 37.5 mg.  There will be further consideration of
041087 -        Neupogen at that time on 081226. ref SDS 13 BQ8F
041088 -
041089 -            [On 081219 Millie sent another letter to Kaiser only that
041090 -            complements the letter today in order to clarify planning
041091 -            options for adjusting treatments to maintain recovery, with
041092 -            less side effects. ref SDS 16 SU8R
041094 -             ..
041095 -            [On 081223 Millie's letter to medical team commends Doctor
041096 -            Rugo for engineering recovery from 5th relapse of
041097 -            Inflammatory Breast Cancer (IBC) with sunitinib,
041098 -            ref SDS 19 BV4T; Millie cited discussion with Doctor
041099 -            Johnson at Kaiser today on 081219 explaining competing
041100 -            values of patient health and getting test data, ref SDS 19
041101 -            BV6R; Millie advised the medical team of willingness to
041102 -            optimize recovery by maintaining sunitinib dose amount that
041103 -            has been effective, and to reduce dose or eliminate
041104 -            treatment with cyclophosphamide that may not be effective,
041105 -            and which may be causing severe adverse chemotherapy side
041106 -            effects. that prevent Millie from getting sufficient
041107 -            treatment with sunitinib to continue recovery. ref SDS 19
041108 -            BW3V
041110 -             ..
041111 -            [On 081226 NEUTS 1.71 (ANC 1710) for blood test at Kaiser.
041112 -            ref SDS 20 DM6M
041114 -             ..
041115 -            [On 090109 Millie letter to medical team reports blood
041116 -            counts very low again, NEUTS 0.87, confirms UCSF treatment
041117 -            plan on 090108 continues sunitinib at full strenth, and
041118 -            pauses cyclophosphamice until blood counts rise to NEUTS
041119 -            1.00. ref SDS 22 UF3Q
041121 -         ..
041122 -   16.  Additionally, if platelets are greater than 75, treatment with
041123 -        sunitinib at the full dose of 37.5 mg will continue.  If
041124 -        platelets  in the blood test on 081226 are less than 75, then I
041125 -        will notify Doctor Rugo with another letter for additional
041126 -        guidance.
041127 -
041128 -            [On 081226 platelets 187 for blood test at Kaiser.
041129 -            ref SDS 20 DM6M
041131 -             ..
041132 -            [On 090310 1500 platelets 245 again well within normal
041133 -            range. ref SDS 23 8T6M
041135 -         ..
041136 -   17.  By copy request Kaiser schedule the blood test in the morning
041137 -        on 081226, and advise that determination of Neupogen treatment
041138 -        on 081226 and 081227 will be made based on results of the test,
041139 -        and consultation with Doctor Johnson and Doctor Rugo.
041141 -         ..
041142 -   18.  Responding to the blood test today showing NEUTS 0.74, Doctor
041143 -        Rugo prescribed Neupogen for tomorrow 081219 and 081220, as
041144 -        already scheduled.  I talked to Bella today in Kaiser's
041145 -        Infusion Clinic, and talked again to Deseriee to coordinate
041146 -        Neupogen tomorrow with meeting Doctor Johnson scheduled at
041147 -        1140. ref SDS 14 RW5H
041149 -         ..
041150 -   19.  Very grateful for adjustments in treatment today will enable
041151 -        continued recovery from IBC symptoms, and bring increased
041152 -        energy so that exercise and vitality are restored.
041154 -         ..
041155 -   20.  In a separate letter earlier today submitted to UCSF the 2nd
041156 -        report for the CT test on the neck performed Nov 7th, [see
041157 -        another record today 081218, ref SDS 15 BE9J], which
041158 -        supplements the report sent to UCSF by Kaiser for below the
041159 -        neck [received on 081112, ref SDS 5 6V5I, and discussed with
041160 -        UCSF the next day on 081113, ref SDS 6 VL5L; at that time, the
041161 -        doctor requested clarification of evident errors in the report
041162 -        for the CT test on 081107, ref SDS 6 9C9M,
041164 -         ..
041165 -   21.  Looking forward to meeting Doctor Johnson tomorrow.
041167 -         ..
041168 -   22.  Best wishes and happy holidays to all.
041169 -
041176 -
041177 -
041178 -
041179 -
041180 -
041181 -
041182 -
041183 -
041184 -
041185 -
041186 -
041187 -
0412 -