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2nd Opinion #3 UCSF Letter Requests List Chemotherapy Treatments for

0603 -
0603 -    ..
0604 - Summary/Objective
0605 -
060501 - Follow up ref SDS 33 0000. ref SDS 19 0000.
060502 -
060503 - Submitted request to UCSF for 2nd opinion.
060504 -
060505 -
060506 -
060507 -
060509 -  ..
0606 -
0607 -
0608 - Background
0609 -
060901 - Planning for support opinion was developed on 060721, ref SDS 33 IS6F,
060902 - based on background reviewed at that time. ref SDS 33 YK6N
060904 -  ..
060905 - Problem to solve is presented in Millie's letter to Kaiser on 060720
060906 - requesting professional opinion on scope of problem, available
060907 - treatments, and strategy for trying treatments.  The doctor's response
060908 - on 060721 was not satisfying. ref SDS 33 O64U
060910 -  ..
060911 - On 050819 letter to UCSF requested 2nd opinion to backup Kaiser's
060912 - analysis. ref SDS 21 0001  On 050823 UCSF responded with referral to
060913 - surgeons in Berkeley. ref SDS 22 AI8N  On 051108 Millie reported
060914 - progress to UCSF following mastectomy surgery on 051027. ref SDS 29
060915 - F53N
060917 -  ..
060918 - Today, Millie submitted ref DIT 1 0001 to Margaret at UCSF, who
060919 - assisted in getting 2nd opinions previously on 050823. ref SDS 22 AI8N
060921 -  ..
060922 - Millie says in her letter...
060923 -
060924 -    1.  Doctor Benz examined me at UCSF Medical Center on October 18,
060925 -        2004, ref SDS 6 0001, and prepared a 2nd opinion received on
060926 -        041117, ref SDS 8 6L9O, that helped me recover, reported on
060927 -        050727. ref SDS 15 YY7F  Last year, you helped me get another
060928 -        round of 2nd opinions on surgery, ref DIT 1 0001, that further
060929 -        helped control my cancer, reported on 050823. ref SDS 22 AI8N
060930 -        My letter to UCSF Medical Center on November 8, 2005,
060931 -        ref DIP 1 0001, reported improvement in my condition, and
060932 -        commended Doctor Benz for good advice. ref SDS 29 F53N
060933 -
060934 -           [On 060801 called UCSF left message asking about progress
060935 -           scheduling meeting for 2nd opinion. ref SDS 35 YK6N
060937 -            ..
060938 -           [On 060802 Doctor Grissom makes referral to UCSF and Doctor
060939 -           Benz; copy of confirmation letter was submitted to Margaret
060940 -           Rubino at UCSF. ref SDS 36 Y25M
060942 -            ..
060943 -           [On 060809 called UCSF and scheduled a meeting with Doctor
060944 -           Benz on 060821. ref SDS 38 YK6N
060946 -            ..
060947 -           [On 060819 confirmed meeting set for 060821; presented new
060948 -           information and issues. ref SDS 39 IX3O
060950 -         ..
060951 -    2.  Now, disease has progressed, reported on 060711, ref SDS 31
060952 -        025H, and I need a new treatment plan. ref SDS 31 K36G  Doctor
060953 -        Benz said that UCSF would be willing to do this, reported on
060954 -        041117. ref SDS 8 OV3T  Please let me know the cost for this
060955 -        service to review the record and submit comments on questions
060956 -        presented along with additional guidance as deemed helpful.
060957 -        ref DIT 1 LX6O
060959 -         ..
060960 -    3.  I need a 2nd opinion on options for treating secondary IBC that
060961 -        has relapsed for the 3rd time after 9 months NED, reported in
060962 -        planning on July 21, 2006, ref SDS 33 O64U, following left
060963 -        breast mastectomy surgery on October 21, 2005. ref DIT 1 OX7K
060964 -
060965 -           [On 060802 Doctor Grissom makes referral to UCSF and Doctor
060966 -           Benz; copy of confirmation letter was submitted to Margaret
060967 -           Rubino at UCSF. ref SDS 36 Y25M
060969 -            ..
060970 -           [On 060809 schedule meeting with Doctor Benz at UCSF on
060971 -           060821. ref SDS 38 YK6N
060973 -         ..
060974 -    4.  I am currently being treated at Kaiser in Walnut Creek, CA, for
060975 -        left breast cancer, originally diagnosed in February, 2002.
060976 -        Lumpectomy surgery was performed on March 12, 2002.  Two cycles
060977 -        of AC chemotherapy were not effective.  Treatment was switched
060978 -        to Taxotere for 2 cycles, which yielded improvement.  Radiation
060979 -        during July and August 2002, and then 4 more cycles of Taxotere
060980 -        completed initial treatment. ref DIT 1 3Z8F
060982 -         ..
060983 -    5.  IBC symptoms first appeared in a PET scan test on December 18,
060984 -        2002.  Red rash was first reported on January 9, 2003.
060985 -        Symptoms gradually increased; however, there was no treatment
060986 -        during 2003. ref DIT 1 N48U
060988 -         ..
060989 -    6.  In 2004, I was treated for IBC with Avastin and Taxol from May
060990 -        until November, when pulmonary emboli ended this treatment.
060991 -        IBC subsided on the Avastin trial, but relapsed severely, until
060992 -        treatment was changed begining on April 15, 2005 to Taxotere
060993 -        and capecitabine, recommended by Doctor Benz at UCSF.  There
060994 -        was strong recovery; inflammation fully subsided, image testing
060995 -        reported no swelled nodes, and CA 15-3 dropped from 107 down to
060996 -        39, then bounced back to 45. ref DIT 1 N490
060998 -         ..
060999 -    7.  On October 21, 2005 I had a left breast "simple" mastectomy.
061000 -        Biopsy reported finding no evidence of IBC disease in the
061001 -        removed tissue.  DCIS was reported in the biopsy. ref DIT 1
061002 -        EI4H
061004 -         ..
061005 -    8.  Lymphedema occurred in January 2006. I am controlling this with
061006 -        home treatment. ref DIT 1 LI4M
061008 -         ..
061009 -    9.  This year there have been two (2) PET scan tests, and one (1)
061010 -        contrast CT study, which all report no express findings of
061011 -        metastatic disease.  CA 15-3 initially dropped to 28, following
061012 -        surgery, but has steadily climbed since January, and is now at
061013 -        71. ref DIT 1 N447
061015 -         ..
061016 -   10.  Disease at this time appears local by test criteria.  PET scan
061017 -        test on April 14, 2006 found FDG SUV 2.6 right axilla and FDG
061018 -        SUV of 4.5 left supraclavicular.  CT contrast study on May 5,
061019 -        2006 did not find anything at these locations. ref DIT 1 RI5M
061021 -         ..
061022 -   11.  Following examination on April 28th, 2006 when the left breast
061023 -        was still clear of disease, a red rash has formed concentrated
061024 -        in an approximate 1" circular area left of the sternum at the
061025 -        right end of the mastectomy incision.  There is a meandering
061026 -        line of low intensity inflammation extending about 2" - 3" from
061027 -        the circular area and about .5" above the incision line, and
061028 -        another about .5" below the surgical incision line. (see
061029 -        examination notes, ref SDS 31 8Z8G, for meeting on July 11th,
061030 -        2006). ref DIT 1 N44N
061032 -         ..
061033 -   12.  In a meeting on July 11, 2006, the primary care physician
061034 -        recommended a strategy of resuming prior treatment with cycles
061035 -        of Taxotere - 102 MG, and capecitabine (Xeloda) - 500 MG
061036 -        tablets taking 1.5 pills twice a day for 2 weeks, then 1 week
061037 -        off.  At that time, other treatments were considered.
061038 -        ref DIT 1 ZT3K
061040 -         ..
061041 -   13.  Last Friday, on July 21 I had my first treatment for relapse,
061042 -        which was the 9th cycle of Taxotere and capecitabine (Xeloda),
061043 -        following the 8th cycle on September 16, 2005. ref DIT 1 WB4G
061044 -
061045 -           [On 060802 Doctor Grissom makes referral to UCSF and Doctor
061046 -           Benz; copy of confirmation letter was submitted to Margaret
061047 -           Rubino at UCSF. ref SDS 36 Y25M
061049 -         ..
061050 -   14.  Questions for 2nd opinion....
061051 -
061052 -        1.  What is the full range of drugs for treatment of IBC,
061053 -            including combinations? ref DIT 1 AC4L
061054 -
061055 -            For example, in a meeting on November 30, 2004 the primary
061056 -            care physician submitted a list of drugs.  The list was not
061057 -            legible, but seemed to have 4 or 5 entries.  Kaiser
061058 -            publishes a pamphlet that lists about 10 drugs, and some
061059 -            combinations. ref SDS 9 9V63  The doctor has stated there
061060 -            is a "declining pool" of treatment options. [see 060721,
061061 -            ref SDS 33 O64U]  This conflicts with the record of a
061062 -            seemingly expanding list of drugs, and so presents a
061063 -            question of professional opinion as to what drugs are
061064 -            available? ref DIT 1 VC5H
061065 -
061066 -               [On 060802 Doctor Grissom makes referral to UCSF and
061067 -               Doctor Benz; copy of confirmation letter was submitted
061068 -               to Margaret Rubino at UCSF. ref SDS 36 Y25M
061070 -                ..
061071 -               [On 061218 doctor repeats generalization about using
061072 -               single agent treatments to avoid exhausing drugs to
061073 -               treat Millie, without listing available drugs for IBC,
061074 -               and conflicting with patient history prescribing
061075 -               double-agent treatments. ref SDS 40 JU7J
061077 -             ..
061078 -        2.  What criteria determines the order prescribing drugs and
061079 -            the dosage of treatments? ref DIT 1 PC6F
061081 -             ..
061082 -            For example, on April 28, 2006 the primary care physician
061083 -            (PCP) proposed treating relapse, ref DIT 1 YR6I, with
061084 -            Navelbine. ref SDS 30 9H5I
061086 -             ..
061087 -            Upon discussion, on July 11th, the decision was changed and
061088 -            treatment started with Taxotere and capecitabine,
061089 -            originally recommended by Doctor Benz in a 2nd opinion
061090 -            received from UCSF Medical Center on November 17, 2004.
061091 -            However, Doctor Benz, also, recommended trying Gemzar and
061092 -            capecitabine.  Additionally, research shows IBC has been
061093 -            treated with Navelbine and capecitabine, and that patients
061094 -            who relapse and resume with drugs that were previously
061095 -            successful may suffer disease progression from mutated
061096 -            cancer cells. ref DIT 1 013N
061098 -             ..
061099 -            Does IBC relapse represent microscopic mutated cells that
061100 -            avoided treatment with Taxotere and capecitabine in 2005,
061101 -            and therefore follow on treatment should be with different
061102 -            drugs, for example, Gemzar and Taxotere, or Navelbine and
061103 -            capecitabine, or something else, reviewed on 060711?
061104 -            ref SDS 31 R05W  How can this be assessed in time to avoid
061105 -            a critical mass of cancer from forming that resists
061106 -            treatment? ref DIT 1 WU7O
061107 -
061108 -               [On 060802 Doctor Grissom suggested a biopsy to target
061109 -               treatment against IBC disease. ref SDS 36 IT7U
061111 -             ..
061112 -            What criteria drives changing treatments?  Does rising or
061113 -            stable CA 15-3 signal the need to try another treatment?
061114 -            ref DIT 1 NE8M
061116 -             ..
061117 -        3.  Surgery - Kaiser elected to "postpone" breast
061118 -            reconstruction surgery on October 21, 2005, and instead,
061119 -            ref DIT 1 IW8M, used a conservative solution, recommended
061120 -            in Kaiser's letter dated September 28, 2005, and received
061121 -            on 051007. ref SDS 27 KO58
061123 -             ..
061124 -            Since the prior surgery was partially successful, can
061125 -            "postponed" surgery now be performed to remove a wider area
061126 -            of infected tissue, ref DIT 1 SX9K, and perform breast
061127 -            reconstruction, as previously considered, toward reducing
061128 -            the need for continuous chemotherapy treatments?
061129 -            ref SDS 26 QS65
061131 -             ..
061132 -        4.  Radiation - Kaiser's Tumor Board recommended additional
061133 -            radiation treatment to the left neck after surgery,
061134 -            ref DIT 1 IZ4J, in a report received from Kaiser on May 17,
061135 -            2004. ref SDS 1 F77M
061137 -             ..
061138 -            When would such treatment be performed?  Can breast
061139 -            reconstruction surgery expand Kaiser's original plan for
061140 -            radiation therapy? ref DIT 1 Q64O
061142 -             ..
061143 -        5.  Biopsy left breast mastectomy tissue - how can this show no
061144 -            evidence of disease, reported on 051027, ref SDS 28 616P,
061145 -            when this tissue contained the greatest concentration of
061146 -            IBC, and now, 9 months later, adjacent tissue with no
061147 -            visible signs of IBC suddenly is an active site of disease?
061148 -            How thorough and dependable are biopsies?  Does IBC present
061149 -            unique challenges for biopsy procedures? ref DIT 1 VB5I
061151 -         ..
061152 -   15.  Patient history from inception in February 2002 through
061153 -        preparations for surgery in October 2005, ref DIT 1 ZD6I, is
061154 -        listed in the record on August 12, 2005. ref SDS 20 UF4J
061156 -         ..
061157 -   16.  Patient history beginning with mastectomy surgery on October
061158 -        21, 2005 to the present, ref DIT 1 PF6O, is listed in the
061159 -        record on July 22, 2006. ref SDS 34 XQ7H
061161 -         ..
061162 -   17.  Patient history for CA 15-3 cancer marker, ref DIT 1 3I3L, is
061163 -        listed in the record on July 11, 2006. ref SDS 31 087J
061165 -         ..
061166 -   18.  Image test analyst reports, ref DIT 1 EK4G, are all also
061167 -        listed and accessible for review. ref SDS 31 FE8F
061169 -         ..
061170 -   19.  Biopsy slides and test films are available as needed.
061171 -        ref DIT 1 0Q4K
061173 -         ..
061174 -   20.  Thanks very much for consideration. ref DIT 1 HQ4N
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