CONTACTS 

SUBJECTS
Musci Doctor Excellent Doctor Patient Communications Very Knowledgea
Musci Michale MD
Template Organization
Test Organization

0706 -
0706 -    ..
0707 - Summary/Objective
0708 -
070801 - Follow up ref SDS 30 0000. ref SDS 29 0000.
070802 -
070803 -
070804 -
070805 -
070807 -  ..
0709 -
0710 -
0711 - Progress
0712 -
071201 - Musci Excellent Communications Knowledgeable Careful Thorough
071202 -
071203 -
071204 - Received ref DRT 1 0001 from Arlette saying...
071205 -
071206 -    1.  I love Dr. Musci and I think he is good on both counts.  A
071207 -        people person,  and very knowledgeable.  He is also very
071208 -        meticulous and doesn't let things  fall through the cracks.  He
071209 -        is a little more to the point than Dr.  Johnson, however.  He
071210 -        will pretty much state his opinion emphatically, but is
071211 -        willing to listen to yours.  By the time you get this letter,
071212 -        you will  already have seen him and I hope your visit was a
071213 -        good one.
071215 -  ..
071216 - Arlette's report aligns with experience working with backup doctor
071217 - earlier today, ref SDS 32 0001, and he discussed having limited
071218 - experience with IBC. ref SDS 32 NO93
071219 -
071220 -
071221 -
071222 -
071223 -
0713 -

SUBJECTS
Default Null Subject Account for Blank Record

0803 -
080401 -         ..
080402 -    2.  I am sorry if I upset you  with the butter statement.  That was
080403 -        rather thoughtless of me.  My point was, that is a very
080404 -        difficult  disease, but you can still do well, and you
080405 -        obviously have up until this point.  Also, I wanted you to know
080406 -        what you were up against, but I should not have upset  you.  I
080407 -        am sorry.
080409 -  ..
080410 - Arlette responds to Millie's letter last night saying that Arlette's
080411 - letter yesterday warning that IBC is a highly lethal disease, aligned
080412 - with a film clip Millie saw showing IBC is very serious, and hard to
080413 - detect. ref SDS 30 JR9Y
080415 -  ..
080416 - Arlette's letter continues...
080417 -
080418 -    3.  If it were me I would go back to UCSF since they were the ones
080419 -        that helped you so much.
080420 -
080421 -            [...see below Millie decides to follow up on getting a 2nd
080422 -            opinion. ref SDS 0 Z44G
080424 -             ..
080425 -            [On 060810 Arlette offers to prepare a packet of documents
080426 -            on Mil's medical records for getting a 2nd opinion.
080427 -            ref SDS 34 U76O
080429 -         ..
080430 -    4.  If you did not feel comfortable with Dr.  Musci, we can always
080431 -        book you with someone else, but I hope you like him.
080433 -         ..
080434 -    5.  Unfortunately, this is not a fun experience and listening to
080435 -        people talk about you like you are not in the room is part of
080436 -        it, but worth it if they save your life.  Stick your two cents
080437 -        in. Let them know, "Hey, I'm right here"
080439 -         ..
080440 -    6.  Let me know how it went today and if you feel you got what you
080441 -        wanted.  I will try to help you in any way I can.  I am on your
080442 -        side.
080444 -  ..
080445 - This evening Arlette wrote another letter asking about results of the
080446 - meeting today.
080447 -
080448 -
080449 -
080451 -  ..
0805 -
0806 -
0807 - 2248
0808 -
080801 - Millie submitted ref DIT 1 0001 to Arlette saying...
080802 -
080803 -    1.  Thanks so much for info on Doctor Musci.  I got it after the
080804 -        meeting, and I think you are right on.  I liked him.
080805 -
080806 -            [On 060809 Arlette making strong effort to support the
080807 -            customer. ref SDS 33 MW4O
080809 -         ..
080810 -    2.  I also want to say I appreciate your candor on IBC.  Please
080811 -        don't hold back to spare feelings.  I need straight talk, and
080812 -        am grateful for your advice.  I sometimes feel that if I knew
080813 -        more in 2003 when I got no treatment for a year, things might
080814 -        be different, but that's all behind me now.
080815 -
080816 -            [On 060809 Arlette recommends getting 2nd opinion from UCSF
080817 -            and offers assistance assembling medical records needed for
080818 -            the 2nd opinion. ref SDS 33 GG5O
080820 -             ..
080821 -            [On 060809 Millie responding to Arlette's next letter
080822 -            comments that her case requires experience to treat relapse
080823 -            of IBC. ref SDS 33 K65S
080825 -         ..
080826 -    3.  There is some good news, possibly.
080828 -         ..
080829 -    4.  When I got up this morning, I thought there was some
080830 -        improvement.  The rash seemed less severe, and breaking up.
080831 -        It's hard to know sometimes when its just wishful thinking, so
080832 -        when Rod felt the same as me, we were able to help Doctor Musci
080833 -        in the meeting with the possibility of delayed response to
080834 -        treatment.  Since he had not seen me before, he really had no
080835 -        way of judging which direction what he saw was headed.
080837 -         ..
080838 -    5.  Honestly, for the moment I'm nearly ecstatic.
080840 -         ..
080841 -    6.  Doctor Musci is hopeful that because we have a reduced dose of
080842 -        treatment compared to the first two cycles last year, the time
080843 -        for response has been stretched out this time, so maybe I hit
080844 -        the panic button too soon.  Last time after one week of
080845 -        treatment with Taxotere and Xeloda, there was dramatic
080846 -        improvement, and this time the problem got worse and worse for
080847 -        3 straight weeks.  Also, last year I had 4 cycles of AC and
080848 -        things seemed to be getting worse, which is why we switched to
080849 -        Taxotere and Xeloda.
080851 -         ..
080852 -    7.  We talked today about trying high dose chemo again to see if we
080853 -        can speed up response.  I could take a week off work to deal
080854 -        with horrible side effects if necessary.  Doctor Musci advised
080855 -        against increasing the dose.  I didn't fully follow his
080856 -        reasoning, but he promised to send a report on our discussion,
080857 -        so his thinking on this will be more clear.
080859 -         ..
080860 -    8.  The doctor was hampered by not having a current CA 15-3.  If it
080861 -        has jumped up to over 100 or something, I would have put my
080862 -        foot down on switching treatments.  I'm going to get it
080863 -        tomorrow and will cross my fingers that CA 15-3 has dropped or
080864 -        at least the rate of rise is much less.  That will fit the
080865 -        feeling that the rash is breaking up.
080867 -         ..
080868 -    9.  After all the discussion, I agreed to go ahead with the
080869 -        original plan to get treatment on Thursday.  The doctor feels
080870 -        we cannot get results of CA 15-3 in time to change treatments
080871 -        anyway, so we will go ahead with the 2nd cycle and see what
080872 -        happens.
080874 -         ..
080875 -   10.  My worry is that we had a similar thing in 2003, the year I was
080876 -        off treatment.  About June or July, just like this time we saw
080877 -        what seemed like a severe red rash.  Since we didn't know about
080878 -        IBC, and since the doctor had seen this when it was less severe
080879 -        and said it was reaction to radiation, we didn't do anything
080880 -        until it got pretty bad.  We called and got sort of an
080881 -        emergency meeting.  By a week later when the doctor saw it, the
080882 -        rash had subsided again and the doctor still felt this was
080883 -        reaction to radiation.  Six months later everything came to a
080884 -        head and I was back in treatment, but still didn't know about
080885 -        IBC.  Much later in November of 2004 the experts at UCSF and
080886 -        Stanford said that IBC ebbs and flows, and you need early
080887 -        treatment.
080889 -  ..
080890 - Millie relates analysis in the record of the meeting with the doctor
080891 - today. ref SDS 32 HT5K
080892 -
080893 -            [On 060809 Arlette recommends getting 2nd opinion from UCSF
080894 -            and offers assistance assembling medical records needed for
080895 -            the 2nd opinion. ref SDS 33 GG5O
080897 -             ..
080898 -            [On 060809 Millie's letter to Arlette expresses worry about
080899 -            doctors having limited experience treating IBC, and cites
080900 -            discussion with backup doctor today. ref SDS 33 C89J
080902 -  ..
080903 - Millie's letter to Arlette continues...
080904 -
080905 -   11.  So, I don't know if things have just quieted for the moment
080906 -        like last time, or that we are really giving that awful disease
080907 -        a "one two punch" and I'm getting better.  CA 15-3 will be an
080908 -        indicator.  Of course, if the rash just goes away I will be the
080909 -        world's "happiest camper."  Your candles and prayers are
080910 -        welcome!!
080911 -
080912 -            [On 061020 cancer marker CA 15-3 rise with stable to worse
080913 -            IBC rash may indicate pockets of resistance to chemotherapy
080914 -            due to removing blood vessels with mastectomy surgery; or
080915 -            effectivenss of current treatment with Taxotere and
080916 -            capecitabine (Xeloda) may have begun to decline.
080917 -            ref SDS 35 725L
080919 -         ..
080920 -   12.  I'm also going to follow your advice and go back to UCSF and
080921 -        Stanford.
080923 -  ..
080924 - Arlette talked about getting a 2nd opinion in her letter this morning,
080925 - per above. ref SDS 0 QO6X
080926 -
080927 -            [On 060810 Arlette offers to prepare a packet of documents
080928 -            on Mil's medical records for getting a 2nd opinion.
080929 -            ref SDS 34 U76O
080931 -  ..
080932 - Millie's letter to Arlette continues...
080933 -
080934 -   13.  If you see Doctor Musci, you can say I liked working with him,
080935 -        and look forward to getting his report.  He explained today
080936 -        about risks of getting too many PET scan tests.  Have you ever
080937 -        had one?  I hate them.  I told the doctor I thought the
080938 -        radiation treatments may have caused my IBC, maybe with all the
080939 -        PET scan tests I've had.  I thought I heard him say they can
080940 -        cause cancer like getting too many dental xrays, and he would
080941 -        include a link in his report to a study on this.
080943 -         ..
080944 -   14.  Whew!  This is a long letter, but it was a great day.  Thanks
080945 -        for listening.
080946 -
080947 -            [On 060809 Arlette notifies Millie that clear, concise,
080948 -            complete communication enables effective patient care,
080949 -            aligns with Kaiser's Healthwise Handbook. ref SDS 33 NY4J
080950 -
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080952 -
080953 -
080954 -
080955 -
080956 -
080957 -
080958 -
0810 -