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 80 0000. ref SDS 79 0000.
040502 -
040503 -
040504 -
040505 -
040507 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie sent the following letter to the medical team reporting results
040902 - of the meeting with Doctor Rugo yesterday on 090616 1245. ref SDS 76
040903 - TP9L
040905 -  ..
040906 - Millie met with Doctor Rugo yesterday and discussed results of CT test
040907 - on 090612, 090616 1245, ref SDS 76 JH48, and in order to start
040908 - treatment with MPA protocol to recover from 8th relapse of cancer,
040909 - 090616. ref SDS 76 YO4J
040911 -  ..
040912 - On 090617 1954 Millie sent a letter notifying the medical team about
040913 - findings from CT test that indicate no internal cancer, ref SDS 80
040914 - 7J9X, but show ground glass opacities that may be causing breathing
040915 - problems, ref SDS 80 7J4Q, and she asked the team if she is still
040916 - cleared for heavy exercise. ref SDS 80 7J4T
040918 -  ..
040919 - The medical team did not notify Millie she was at risk, so went to
040920 - Lafayette Reservoir today and did a test hike to evaluate progression
040921 - of breathing problems.  This afternoon, she wrote a letter reporting
040922 - results of the test...
040923 -
040924 -    1.  Subject: Hiking Today May Indicate Lung Capacity
040925 -        Date: Thu, 18 Jun 2009 17:57:14 -0700
040936 -         ..
040937 -    2.  As reported in my letter to the team yesterday, I went hiking
040938 -        at Lafayette Reservoir this morning. ref SDS 80 7J4T  This has
040939 -        been a part of regular exercise the past 15 years.
040941 -         ..
040942 -    3.  The route has numerous hills.  The first hill is the 2nd most
040943 -        difficult, approximatley 80 meters and perhaps 30 meters high.
040944 -        I could be off on these dimensions.  Since you have visited the
040945 -        Reservoir you may have better information.
040947 -         ..
040948 -    4.  The route is about 2.75 miles.  Normally I do 1 - 3 laps,
040949 -        depending on how I feel, and do this 3 - 5 times per week.  In
040950 -        recent months, I have only been doing 1 lap due to shortness of
040951 -        breath.  Today, I went out to provide test data that
040952 -        complements the CT test on 090612 at Kaiser.  For example, Tara
040953 -        had me walk up and down the hallway during examination on
040954 -        090129, to test my pulse, ref SDS 24 SX4H, which had dropped
040955 -        during sunitinib treatments.
040957 -         ..
040958 -    5.  Today, at Lafayette Reservoir I could not complete a lap.
040959 -        Turned back at the .75 mile mark, and walked back the other way
040960 -        and met Rod on his route at the 2.25 mile mark.  Overall I did
040961 -        about 2 miles, but this was mostly flat, so I avoided the tough
040962 -        hills.
040963 -
040964 -            [On 090619 1224 Millie was pleased to complete 1.5 laps at
040965 -            Lafayette reservior; asks medical team if breathing
040966 -            capacity can increase similar to eventual recovery of
040967 -            lymphatic system, ref SDS 82 2T8L, until recent increase in
040968 -            IBC caused by medical mistake performing radiation at UCSF
040969 -            has caused lympedema to increase again in the left arm,
040970 -            shown by requirements to order larger compression sleeve.
040971 -            ref SDS 82 DU6S
040973 -         ..
040974 -    6.  I am pleased that I do not have any pain in my chest climbing
040975 -        the hills, nor are my legs tired, which are common symptoms
040976 -        when I am out of shape, and starting to do difficult physical
040977 -        aerobic activity.  So, I don't think this is a fitness issue.
040978 -        As long as I walk or hike on a relatively flat surface, I am
040979 -        fine.
040981 -         ..
040982 -    7.  Climbing the hills I feel a "loss of breath."  Going up stairs
040983 -        at home I am okay, unless I make several trips in a row, then I
040984 -        feel loss of breath.
040986 -         ..
040987 -    8.  This experience presents a sensation of diminished lung
040988 -        capacity.
040990 -         ..
040991 -    9.  It seemed like Doctor Rugo was interested in the CT test on
040992 -        Tuesday in order to assess this kind of problem, ref SDS 76
040993 -        YS4J, but meetings occur so quickly, there wasn't enough time
040994 -        to understand what folks think might be occurring, and what
040995 -        should be done about it.  Of course at that time, the CT test
040996 -        report was not available from Kaiser, so I understand why
040997 -        analysis may have been reserved until data was reviewed.
040999 -         ..
041000 -   10.  Naturally, based on Doctor Hsu's comments during the meeting on
041001 -        090609 [reporting medical mistakes performing radiation
041002 -        treatments at UCSF during Feb and Mar which he diagnosed caused
041003 -        new breathing problems, ref SDS 67 W65W], I am interested in
041004 -        Kaiser's assessment with UCSF's input.  The letter yesterday on
041005 -        090617 cited findings in the CT test on 090612, and asked
041006 -        whether I should reduce physical exercise? ref SDS 80 7J4T
041007 -        Since I am not experiencing pain, am I cleared to exert as much
041008 -        effort as feels comfortable, or is there a risk of damage from
041009 -        routine exercise with diminished lung capacity, even without
041010 -        feeling pain? ref SDS 80 7J4W
041011 -
041012 -            [On 090619 1208 Doctor Johnson responds saying Millie is
041013 -            cleared for exercising to tolerance. ref SDS 81 LE7M
041015 -         ..
041016 -   11.  I further asked yesterday whether MPA treatment can reasonably
041017 -        be expected to clear up diminished lung capacity, i.e., is this
041018 -        cancer, or are additional tests needed to evaluate scope of the
041019 -        problem? ref SDS 80 7J4Q
041020 -
041021 -            [On 090619 1208 Doctor Johnson does not say how the medical
041022 -            team will treat Millie to recover from breathing problems.
041023 -            ref SDS 81 LE7M
041025 -             ..
041026 -            [On 090619 1224 Millie was pleased to complete 1.5 laps at
041027 -            Lafayette reservior; asks medical team if breathing
041028 -            capacity can increase similar to eventual recovery of
041029 -            lymphatic system, ref SDS 82 2T8L, until recent increase in
041030 -            IBC caused by medical mistake performing radiation at UCSF
041031 -            has caused lympedema to increase again in the left arm,
041032 -            shown by requirements to order larger compression sleeve.
041033 -            ref SDS 82 DU6S
041035 -         ..
041036 -   12.  I am very pleased and hopeful about getting MPA underway to
041037 -        treat my cancer, and grateful to Kaiser and UCSF for moving
041038 -        forward.
041040 -         ..
041041 -   13.  There is a question about whether prolonged untreated IBC in my
041042 -        breastbone area may have reached critical mass that cannot be
041043 -        stopped with systemic care, and so other direct measures are
041044 -        needed, e.g., radiation, surgery (??) for this particular
041045 -        problem [On 090129 Doctor Rugo prescribed radiation to recover
041046 -        control of Millie's cancer, reported on, ref SDS 26 4S8O].  I
041047 -        understand we have to give MPA a chance to be effective, and so
041048 -        am not requesting a rush to judgment 2 days into the program.
041049 -        It also seems that radiation may have caused the lung problem
041050 -        [based on Doctor Rugo's explanation on 090514 that ground glass
041051 -        opacities cause breathing problems and were created by
041052 -        radiation treatments, ref SDS 65 NL9I].  Could radiation be
041053 -        angled to miss the lungs, and still treat IBC in the breastbone
041054 -        area?
041056 -         ..
041057 -   14.  In any case, I would like to get feedback on the new loss of
041058 -        breath issue, options for further investigation, if needed, and
041059 -        what might be done besides MPA to address the problem.  If
041060 -        additional tests are needed, I would like to do them before
041061 -        meeting next week so the team has additional data to address
041062 -        the problem in time to be effective.
041064 -         ..
041065 -   15.  Hope I am not being too pushy.  Climbing the hills today and
041066 -        having to turn back for the first time ever was discouraging.
041068 -         ..
041069 -   16.  Your support is appreciated.
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