CONTACTS 

SUBJECTS
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0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 5 0000, ref SDS 4 0000.
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie was confused, worried, and emotional this morning about plans
040902 - to maintain strong recovery from cancer and reduce side effects by
040903 - adjusting treatments to tolerable levels next week on 081226,
040904 - presented during the meeting at UCSF yesterday on 081218, ref SDS 4
040905 - QW48, as set out in the letter confirming understandings to the
040906 - medical team. ref SDS 5 GF4V
040908 -  ..
040909 - Millie has been feeling badly for several weeks reported yesterday on
040910 - 081218, ref SDS 3 6E7G, and today was even worse, which is why the
040911 - doctor changed the treatment yesterday, ref SDS 5 GF9X, responding to
040912 - Millie's report the day before on 081217. ref SDS 2 YJ6R
040914 -  ..
040915 - Millie sent a letter to the primary care physician at Kaiser this
040916 - morning to further guide discussion with agenda issues for meeting at
040917 - 1140 with the doctor to perform regularly scheduled oversight of
040918 - Millie's care on referral to UCSF, and complementing agenda issues
040919 - from the letter sent to Kaiser and the medical team yesterday
040920 - reporting understandings meeting with UCSF. ref SDS 5 N55I
040922 -  ..
040923 - Millie's letter to Kaiser this morning says...
040924 -
040925 -    1.  Subject: Meeting Agenda at Kaiser Today Dec 19th
040926 -        Date: Fri, 19 Dec 2008 10:42:39 -0800
040933 -         ..
040934 -    3.  The letter yesterday sets the general agenda for discussions
040935 -        this morning at 1140. ref SDS 5 N55I
040937 -         ..
040938 -    4.  I would appreciate your helping me understand options for
040939 -        changing treatment with sunitinib and cyclophosphamide.  I will
040940 -        bring today Doctor Rugo's instructions (actually prepared by
040941 -        Tara).  This was discussed briefly with the doctor for about 2
040942 -        minutes, and I was asked what I wanted to do?
040944 -         ..
040945 -    5.  As you know, meetings with doctors are emotional.  I find it
040946 -        difficult to think clearly, especially on complex issues that
040947 -        affect how I feel.  What I wanted yesterday was consideration
040948 -        of alternate scenarios, but since there wasn't enough time, I
040949 -        simply agreed to what was proposed.
040951 -         ..
040952 -    6.  Yesterday, Doctor Rugo paused treatment for a week, and ended
040953 -        treatment entirely with Methotrexate.  This gives blood counts
040954 -        time to recover, along with Neupogen treatment approved for
040955 -        today and tomorrow. ref SDS 4 QW48  [cited in Millie's letter
040956 -        to the medical team yesterday on 081218. ref SDS 5 GF9X
040957 -
040958 -           [On 081219 1140 primary care physician concurs UCSF order
040959 -           to pause treatments, ref SDS 6 JK7H, due to rising
040960 -           cytopenia, including pancytopenia from expanded low blood
040961 -           counts that risks fatal infection. ref SDS 6 LS6K
040963 -         ..
040964 -    7.  My concern is with dosage of sunitinib and cyclophosphamide
040965 -        starting up again next week on 081226.  There seem to be
040966 -        competing issues.  On the one hand, it seems that sunitinib has
040967 -        been the major contributor to my recovery.  Significant
040968 -        improvement occurred after the first 14 days of sunitinib
040969 -        alone, reported during examination at UCSF on 081126 [cited in
040970 -        the letter to the medical team on 081202. ref SDS 1 YJ3G
040971 -
040972 -            [On 081219 primary care physician received and printed
040973 -            Millie's letter submitted to Kaiser on 081219, ref SDS 0
040974 -            KY8Q; discussion during the meeting at Kaiser indicated
040975 -            that UCSF protocol may prevent maintaining amount of
040976 -            "targeted" treatment with sunitinib, which has been
040977 -            effective reducing cancer symptoms with minimal side
040978 -            effects in Millie's case, and instead reduce this effective
040979 -            drug, and further require not reducing treatment with
040980 -            cyclophosphamide chemotherapy which may be ineffective
040981 -            because Millie's cancer cells may resist cyclophosphamide
040982 -            due to progression of disease after previous treatments,
040983 -            and which cause the most severe side effects. ref SDS 6
040984 -            5E4K
040986 -             ..
040987 -            [On 081223 Millie's letter to medical team commends Doctor
040988 -            Rugo for engineering recovery from 5th relapse of
040989 -            Inflammatory Breast Cancer (IBC) with sunitinib,
040990 -            ref SDS 7 BV4T; Millie cited discussion with Doctor Johnson
040991 -            at Kaiser today on 081219 explaining competing values of
040992 -            patient health and getting test data, ref SDS 7 BV6R;
040993 -            Millie advised the medical team of willingness to optimize
040994 -            recovery by maintaining sunitinib dose amount that has been
040995 -            effective, and to reduce dose or eliminate treatment with
040996 -            cyclophosphamide that may not be effective, and which may
040997 -            be causing severe adverse chemotherapy side effects that
040998 -            prevent Millie from getting sufficient treatment with
040999 -            sunitinib to continue recovery for cancer. ref SDS 7 BW3V
041001 -         ..
041002 -    8.  Examination yesterday showed further substantial recovery after
041003 -        adding cyclophosphamide and Methotrexate.  However, blood
041004 -        counts have dropped dramatically, leading to consideration to
041005 -        change dosage, including ending Methotrexate.
041007 -         ..
041008 -    9.  Since there was good response before adding cyclophosphamide
041009 -        and Methotrexate, I expect recovery will continue without
041010 -        Methotrexate, and am hopeful blood counts will improve, so that
041011 -        my energy recovers.
041013 -         ..
041014 -   10.  Initially cyclophosphamide was to be ended along with
041015 -        Methotrexate.  There were several consultations with Tara and
041016 -        Glenna leaving the meeting to confer with Doctor Rugo.
041017 -        Ultimately, this was changed to continue cyclophosphamide.
041019 -         ..
041020 -   11.  Initially, as well, the order was to reduce sunitinib from 37.5
041021 -        mg to 25 mg per day.  Doctor Rugo came into the meeting for
041022 -        about 5 minutes, and upon inquiry about maintaining sunitinib
041023 -        at the higher level, asked me what I want to do.  We then came
041024 -        up with the plan to do another blood test next week, and if
041025 -        NEUTS are over 1.250 (ANC 1250), sunitinib will continue at the
041026 -        original dose 37.5 mg.
041028 -         ..
041029 -   12.  There was also discussion about platelets, along the lines that
041030 -        if the test next week shows platelets are below 75, then
041031 -        sunitinib will be reduced to 25 mg per day.
041033 -         ..
041034 -   13.  Since we did not have time to discuss yesterday, can you please
041035 -        comment today on my concerns as follows...
041037 -             ..
041038 -        1.  Previously, we tried a lower dose of capecitabine and
041039 -            Taxotere on the 2nd use after my mastectomy in 2006.  This
041040 -            was not effective like the full dose was in 2005.
041042 -             ..
041043 -        2.  Doctor Rugo lowered the dose of Carboplatin in June and
041044 -            effectiveness stopped, wound up relapsing in August.
041046 -             ..
041047 -        3.  This record encourages me to stick with the higher dose of
041048 -            sunitinib for as long as possible to hopefully fully clear
041049 -            up the IBC rash, get the cancer marker down.
041051 -             ..
041052 -        4.  Since sunitinib was effective without cyclophosphamide, I
041053 -            wonder why the initial plan to end this treatment would not
041054 -            be a first effort to reduce side effects, rather than
041055 -            reduce the drug that seems most effective?
041057 -             ..
041058 -        5.  My sense is that cyclophosphamide is the chemotherapy
041059 -            causing the low blood counts and causing me to have low
041060 -            energy and feel lousy all the time, to the point of wanting
041061 -            to just end everything.  My general understanding was that
041062 -            sunitinib is a "targeted" drug that is less harsh on the
041063 -            body and blood counts, like cetuximab.  For the past 2
041064 -            years on cetuximab I felt physically very well, shown by
041065 -            ability to hike 5 - 8 miles a day.  This has dropped to
041066 -            zero.  While I was on sunitinib for the first 2 weeks I
041067 -            seemed fine - hiking continued, similar to cetuximab.  Of
041068 -            course this may only have refl
041070 -             ..
041071 -        6.  Can you please help me correlate or separate effects of
041072 -            sunitinib from cyclophosphamide in order to consider
041073 -            whether to reduce one or the other, toward optimizing
041074 -            chances of reducing and controlling symptoms of IBC?
041075 -
041076 -               [On 090108 patient history reports medical team at UCSF
041077 -               maintained sunitinib at full dose to optimize recovery
041078 -               from IBC, and paused cyclophosmphamide until blood
041079 -               counts rise above NEUTS 1.00, and in that case dose of
041080 -               cyclophasphamide will be reduced to treatment 5 days per
041081 -               week from 7 days. ref SDS 8 9V4I
041083 -                ..
041084 -               [On 090109 Millie letter to medical team reports blood
041085 -               counts very low again, NEUTS 0.87, confirms UCSF
041086 -               treatment plan on 090108 continues sunitinib at full
041087 -               strenth, and pauses cyclophosphamice until blood counts
041088 -               rise to NEUTS 1.00. ref SDS 9 UF3Q
041090 -             ..
041091 -        7.  Platelets was discussed yesterday as possibly causing a new
041092 -            side effect of nosebleed, which is listed as a side effect
041093 -            of sunitinib.  Might this be another reason then why Doctor
041094 -            Rugo proposes to reduce the dose for sunitinib, trying to
041095 -            balance good results treating IBC against maintaining
041096 -            platelets?  Is there another way to address platelets
041097 -            without initially reducing sunitinib?  Should eliminating
041098 -            Methotrexate and/or cyclophosphamide be expected to allow
041099 -            platelets to rise?
041101 -         ..
041102 -   14.  As you might expect this is an emotional issue for me.  When
041103 -        the doctor asked yesterday, "What do you want to do?" -- I
041104 -        should have answered to recover from IBC as quickly and
041105 -        thoroughly as possible, and with minimal side effects!  "What
041106 -        does it take to do that?"
041107 -
041108 -               [On 081223 Millie's letter to medical team commends
041109 -               Doctor Rugo for engineering recovery from 5th relapse of
041110 -               Inflammatory Breast Cancer (IBC) with sunitinib,
041111 -               ref SDS 7 BV4T; Millie cited discussion with Doctor
041112 -               Johnson at Kaiser today on 081219 explaining competing
041113 -               values of patient health and getting test data,
041114 -               ref SDS 7 BV6R; Millie advised the medical team of
041115 -               willingness to optimize recovery by maintaining
041116 -               sunitinib dose amount that has been effective, and to
041117 -               reduce dose or eliminate treatment with cyclophosphamide
041118 -               that may not be effective, and which may be causing
041119 -               severe adverse chemotherapy side effects. that prevent
041120 -               Millie from getting sufficient treatment with sunitinib
041121 -               to continue recovery. ref SDS 7 BW3V
041123 -         ..
041124 -   15.  Since I couldn't think of that at the time, your assistance
041125 -        today is greatly appreciated in helping understand
041126 -        ramifications of alternatives.
041128 -         ..
041129 -   16.  Thanks.
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