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: February 2, 2009 11:18 AM Monday; Rod Welch

Doctor Rugo reports to medical team Doctor Hsu aware Millie needs treatment.

1...Summary/Objective


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SUBJECTS
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0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 51 0000. ref SDS 50 0000.
040502 -
040503 -
040504 -
040505 -
040507 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Background...
040902 -
040903 -    1.  Case study dilemma balancing sunitinib treatments to optimize
040904 -        recovery from 5th relapse IBC, and without increasing
040905 -        debilitating side effects that prevent exercise required to
040906 -        benefit from recovery. ref SDS 10 I87N
040908 -         ..
040909 -    2.  On 090108 examination at UCSF showed possible progression of
040910 -        IBC in breastbone area, as set out in Millie's letter to the
040911 -        medical team on 090109. ref SDS 12 UC4H  Millie reported severe
040912 -        side effects shown by wide range of blood counts falling.
040913 -        ref SDS 12 UF3Q  Medical team prescribed another cycle
040914 -        sunitinib treatment, with cyclophosphamide paused until blood
040915 -        counts increase to a safe level. ref SDS 12 UF3T
040917 -         ..
040918 -    3.  On 090109 Millie's letter reports rise of IBC with sunitinib
040919 -        seen at UCSF on 090108 occurred previously, cited in Millie's
040920 -        letter on 081125, ref SDS 5 XX4P; there was rise of IBC and
040921 -        then substantial recovery reported again on 081217, ref SDS 6
040922 -        YJ4V; on 081230 Millie's letter reported on 081224 and 081225
040923 -        rise of IBC, and then improvement on 081226, ref SDS 10 JV5M;
040924 -        most recently on 090106 Millie cited again advance of IBC on
040925 -        081224 and 081225, and now disease seems to be subsiding again.
040926 -        ref SDS 11 YO4V]
040928 -         ..
040929 -    4.  On 090115 Millie letter to Catherine and Diane in the Infusion
040930 -        Clinic at UCSF reported rising side effects of sunitinib
040931 -        protocol, ref SDS 15 5J9Y; she tried hiking a few times, but
040932 -        this hurts her feet (peripheral neuropathy) and legs are very
040933 -        weak, shown in patient history on daily treatments. ref SDS 14
040934 -        KL4J  Have been spending more time in the gym doing aerobics,
040935 -        which is a little more tolerable. ref SDS 14 3E4K
040937 -         ..
040938 -    5.  On 090116 Glenna called to ask about response to treatment and
040939 -        side effects, ref SDS 16 JY6L, and was advised that IBC in the
040940 -        breastbone area was stable to worse, and other sites are stable
040941 -        to improved with sunitinib protocol, citing the record of
040942 -        patient history the day before on 090115. ref SDS 14 124N
040944 -         ..
040945 -    6.  On 090116 during call from Glenna advised that Millie wants to
040946 -        reduce the dose of sunitinib in order to reduce debilitating
040947 -        side effects, and requested remedy to reduce side effects with
040948 -        full dose of sunitinib in order to optimize recovery.
040949 -        ref SDS 16 JY7J
040951 -         ..
040952 -    7.  On 090116 Millie received a letter from Glenna transmitting a
040953 -        copy of a letter Glenna wrote to the doctor reporting
040954 -        understandings from telecon in the morning on 090116,
040955 -        ref SDS 18 YN9H; Glenna's letter to the doctor described
040956 -        difficulty tolerating side effects of sunitinib, ref SDS 18
040957 -        4P5M, that Millie wants to reduce the dose to reduce side
040958 -        effects, but is afraid about losing benefits of recovering
040959 -        from IBC. ref SDS 18 HV3M
040961 -         ..
040962 -    8.  On 090116 Glenna's letter to the doctor asked about changing to
040963 -        another treatment. ref SDS 18 HV3O
040965 -         ..
040966 -    9.  On 090116 Glenna planned to meet with the doctor later in the
040967 -        day on 090116 to discuss changing Millie's treatment.
040968 -        ref SDS 18 HP4J
040970 -         ..
040971 -   10.  On 090116 Millie's letter to the medical team clarifies telecon
040972 -        on condition following examination at UCSF on 090108, reporting
040973 -        IBC in breastbone area looks stable to worse, and everywhere
040974 -        else looks improved to stable, indicating recovery has slowed
040975 -        ref SDS 19 IS6G, relative to findings on 081218, ref SDS 7
040976 -        VD4F, confirmed in Millie's letter later that day reporting
040977 -        significant recovery. ref SDS 8 GF8V
040979 -         ..
040980 -   11.  On 090118 Millie talks about wanting to end treatment with
040981 -        sunitinib that seems now less effective and has severe side
040982 -        effects after adding cycloposphamide. ref SDS 20 UC41
040984 -         ..
040985 -   12.  On 090121 Millie letter to primary care physician says very
040986 -        pleased to take this occasion on my birthday to say thanks for
040987 -        such great care the past 7 years.  You noted in our first
040988 -        meeting on 020321 that Oncology presents unique challenges.
040989 -        ref SDS 1 R94H  My case has been complicated by other maladies
040990 -        that strain resources of time, money, and emotion.  Having you
040991 -        at the helm with Arlette's assistance has been a blessing.
040992 -        ref SDS 23 F23Y
040994 -         ..
040995 -   13.  On 090121 Glenna calls and asks again about Millie's response
040996 -        to treatment, ref SDS 24 AJ3J, following up her call on 090116,
040997 -        ref SDS 16 JY6L, and per background above. ref SDS 24 JY5I
040999 -         ..
041000 -   14.  On 090121 during call from Glenna reported patient history,
041001 -        ref SDS 24 ZO4F, on 090120 shows IBC rash looks improved to
041002 -        stable, and nodules in the breastbone area seem worse,
041003 -        ref SDS 22 124N, relative to detailed review on 090110,
041004 -        ref SDS 13 124N, and after 11 days of treatment with only
041005 -        sunitinib, and 25 total treatments with sunitinib, since the
041006 -        pause on 081218 and resuming on 081226. ref SDS 21 6C4J
041008 -         ..
041009 -   15.  On 090121 during call from Glenna reported patient history
041010 -        reported IBC worsening in breastbone area has progressed onto
041011 -        the right breast and spread toward the left chest reflects
041012 -        rising cancer marker, ref SDS 24 N95K, Labs at Kaiser on 090116
041013 -        report CA 15-3 303. ref SDS 17 PQTQ  This record indicates
041014 -        Millie has suffered 6th relapse of IBC.
041016 -         ..
041017 -   16.  On 090121 Glenna asked for most severe side effects from
041018 -        continuing with sunitinib treatment. ref SDS 24 TW53
041020 -         ..
041021 -   17.  On 090121 Glenna asked for Millie's records on Doctor Rugo's
041022 -        plans for follow on treatments?  During the call developed
041023 -        background on UCSF planning for Millie's future treatment after
041024 -        sunitinib. ref SDS 24 Y67L
041026 -         ..
041027 -   18.  On 090121 Glenna reported during the call that she would send
041028 -        another letter to Doctor Rugo explaining Millie's slow response
041029 -        to treatment with sunitinib, and supplementing Glenna's letter
041030 -        to the doctor on 090116, ref SDS 35 SY5J; Glenna further advised
041031 -        during the call on 090121 that she would meet again with Doctor
041032 -        Rugo to discuss plans for changing Millie's treatment to
041033 -        recover from Millie's 6th IBC relapse. ref SDS 24 N976
041035 -         ..
041036 -   19.  On 090121 patient history summarized to faciliate Glenna's
041037 -        meeting with Doctor to figure out Millie's next treatment.
041038 -        ref SDS 24 NU5H
041040 -             ..
041041 -        a.  Laboratory blood tests listed for Millie to facilitate UCSF
041042 -            considering Millie's next treatment. ref SDS 24 6Y9K
041044 -             ..
041045 -        b.  Image test history of PET, CT, Xray, MRI listed for Glenna
041046 -            to discuss with Doctor Rugo discussing Millie's next
041047 -            treatment. ref SDS 24 216F
041049 -             ..
041050 -        c.  Treatment history listed for Glenna to discuss with Doctor
041051 -            Rugo discussing Millie's next treatment. ref SDS 24 H16M
041053 -             ..
041054 -        d.  Strategy considerations for selecting Millie's next
041055 -            treatment. ref SDS 24 558O
041057 -         ..
041058 -   20.  On 090122 telephone message from Glenna reported that the
041059 -        doctor ended treament with sunitinib protocol; Glenna met with
041060 -        Doctor Rugo to develop treatment plan for Millie, and UCSF
041061 -        scheduled Millie to start new treatment on 090129. ref SDS 28
041062 -        K96F
041064 -         ..
041065 -   21.  On 090123 primary care physician at Kaiser cited sudden relapse
041066 -        of IBC with nodules spreading in the breastbone area, and
041067 -        cancer marker elevated to CA 15-3 303 in the labs at Kaiser on
041068 -        090116, ref SDS 17 PQTQ, shows Millie needs immediate change of
041069 -        treatment to prevent cancer from cascading out of control, and
041070 -        that UCSF should prescribe treatment, ref SDS 33 RK6O, because
041071 -        Millie's 6th relapse of IBC shows cancer has mutated to cells
041072 -        that are now very resistant to treatments available at Kaiser,
041073 -        as discussed previously during the meeting at Kaiser on 080829,
041074 -        and cited in Millie's letter to the medical team. ref SDS 4
041075 -        RP9R
041077 -         ..
041078 -   22.  On 090123 Millie's letter to medical team reports progress at
041079 -        UCSF scheduling Millie to start on a new treatment. ref SDS 29
041080 -        KR4P
041082 -         ..
041083 -   23.  On 090123 Glenna called and thanked her for expediting Millie's
041084 -        new treatment to start on 090129 so that cancer does not
041085 -        cascade out of control, ref SDS 30 TR80; request documentation
041086 -        on new treatment in order to be prepared starting on 090129
041087 -        0830, as presented in Glenna's telephone message on 090122,
041088 -        ref SDS 28 AT6N
041090 -         ..
041091 -   24.  On 090123 Glenna advised during her call that there was not
041092 -        enough time to meet with Doctor Rugo on 090121; she received a
041093 -        letter from the doctor to coordinate with Kaiser on getting
041094 -        timely referral to start Millie's next treatment at UCSF on
041095 -        090129. ref SDS 30 118M
041097 -         ..
041098 -   25.  On 090123 Doctor Johnson, Millie's primary care physician at
041099 -        Kaiser, called and confirmed prior advice that Doctor Rugo can
041100 -        prescribe follow on treatment for Millie because her cancer has
041101 -        become resistant to drugs available at Kaiser. ref SDS 33 8K6K
041103 -         ..
041104 -   26.  On 090127 Millie letter to medical team reporting Doctor
041105 -        Johnson called on 090123 to advise of approval for Doctor Rugo
041106 -        to prescribe Millie's follow on treatment at UCSF to start
041107 -        immediately on 090129. ref SDS 35 TY5W
041109 -         ..
041110 -   27.  On 090127 Millie's letter to the medical team submitted patient
041111 -        history to facilitate prescribing new treatment for Millie's
041112 -        6th relapse of IBC. ref SDS 35 TY6S
041114 -         ..
041115 -   28.  On 090127 Millie's letter reported side effects of sunitinib
041116 -        have begun to subside after stopping treatment on 090122 in
041117 -        order to prepare to start new treatment on 090129. ref SDS 35
041118 -        TY8T
041120 -         ..
041121 -   29.  On 090128 Millie letter to primary care physician and the
041122 -        medical team reported IBC worsening, and taking Vicadin for
041123 -        pain. ref SDS 37 2S8X
041125 -         ..
041126 -   30.  On 090129 Doctor Rugo sent a letter to primary care physician
041127 -        at Kaiser requesting referral to UCSF for treatment with
041128 -        hyperthermia and Doxil, reported in Millie's letter to medical
041129 -        team on 090130. ref SDS 43 AY9Q
041131 -         ..
041132 -   31.  On 090130 Millie letter to primary care physician, ref SDS 43
041133 -        GV4M, reports examination at UCSF on 090129 found IBC
041134 -        progressing rapidly, ref SDS 43 4S8O, as Doctor Johnson noted
041135 -        earlier on 090123, ref SDS 33 8K6K;
041137 -         ..
041138 -   32.  On 090130 Millie letter to primary care physician advises UCSF
041139 -        reported communication delay prevented getting referral from
041140 -        Kaiser, which then delayed starting hyperthermia treatment on
041141 -        090129 in time to be effective. ref SDS 43 AY8Q
041143 -         ..
041144 -   33.  On 090130 Millie letter to medical team reports that on 090129
041145 -        coordinating timely referral from Kaiser was delayed because
041146 -        primary care physician was not in the office. ref SDS 43 AY9T
041148 -         ..
041149 -   34.  On 090130 Krshna called Millie to schedule hyperthermia
041150 -        treatment in the Radiation Oncology Department, and said that
041151 -        UCSF has not received referral authorization from Kaiser.
041152 -        ref SDS 41 NM5H
041154 -         ..
041155 -   35.  On 090130 called Arlette, ref SDS 42 RY4G, and she contacted
041156 -        Doctor Johnson off-site in a meeting, and he advised that the
041157 -        doctor would file authorization in the evening on 090130.
041158 -        ref SDS 42 PPYY
041160 -         ..
041161 -   36.  On 090131 Millie received letter from Doctor Johnson, primary
041162 -        care physician, that Kaiser authorization was issued on 090130,
041163 -        ref SDS 44 GV4M, for Millie to get treatment for 6th relapse of
041164 -        IBC with hyperthermia and Doxil, prescribed by Doctor Rugo on
041165 -        090129 (reported in Millie's letter on 090130. ref SDS 43 AY9Q
041167 -         ..
041168 -   37.  On 090201 Millie letter reports to medical team 6th relapse IBC
041169 -        getting worse by the hour requires immediate treatment to
041170 -        prevent cancer from getting out of control.  Pain from IBC
041171 -        makes sleeping difficult. ref SDS 45 KN9T
041173 -         ..
041174 -   38.  On 090201 Millie plans to go to UCSF for treatment tomorrow on
041175 -        090202 when convenient for Doctor Hsu to provide hypethermia
041176 -        treatment. ref SDS 45 KN9W
041178 -         ..
041179 -   39.  On 090201 Millie reports lymphedema recurrence caused by
041180 -        sling-immobilizer to treat dislocated shoulder on 090122;
041181 -        advises Cellulitis did not recur, as previously. ref SDS 45
041182 -        KN4S
041184 -         ..
041185 -   40.  On 090201 Millie reports good news energy recovering after side
041186 -        effects from stopping treatment on sunitinib clinical study
041187 -        ordered by Doctor Rugo on 090122. ref SDS 45 KN4Y
041189 -         ..
041190 -   41.  On 090201 UCSF letter notifies Millie that Doctor Rugo is
041191 -        communicating with Doctor Hsu using email to expedite Millie's
041192 -        treatment; recommends that Millie not come to UCSF on Monday
041193 -        090202 in order to assist the medical team start hyperthermia
041194 -        treatment in time to be effective. ref SDS 46 GV4M
041196 -         ..
041197 -   42.  On 090201 Millie responds to Doctor Rugo and medical team with
041198 -        assurance that the patient would not "camp out" in Doctor Hsu's
041199 -        office, but would stand-by in the cafeteria so that treatment
041200 -        can begin when convenient for UCSF, and without waiting for
041201 -        patient to travel through mid-day traffic, so that urgent
041202 -        treatment is not delayed beyond a point when treatment can no
041203 -        longer be effective. ref SDS 47 GV4M
041205 -         ..
041206 -   43.  On 090201 Millie asks Doctor Rugo about coordinating to provide
041207 -        medical records on file in the doctor's office the past 2 years
041208 -        treating Millie at UCSF, ref SDS 47 5R4S, to use by Doctor Hsu,
041209 -        requested by Krshna in a call the day before on 090130.
041210 -        ref SDS 41 DL4J
041212 -         ..
041213 -   44.  On 090201 emotional trauma esclates from delays getting
041214 -        treatment for aggressive cancer that seems to be cascading out
041215 -        of control because of communication delays. ref SDS 47 5R4V
041217 -         ..
041218 -   45.  On 090202 Michelle at UCSF called in the morning, and said
041219 -        Kaiser has not submitted authorization for Millie's treatment
041220 -        by Doctor Hsu. ref SDS 49 9Y5I  Michelle asked the patient to
041221 -        coordinate with the primary care physician at Kaiser to file
041222 -        Authorization, ref SDS 49 9Y6Y, reported in Millie's letter to
041223 -        the medical team. ref SDS 51 GV4M
041225 -         ..
041226 -   46.  Explained Doctor Johnson reported in a letter on Sunday
041227 -        (090131) that authorization was filed Friday night, ref SDS 44
041228 -        GV4M, and that he would be out of town for several days, so he
041229 -        is not available on 090202, ref SDS 48 Y35M, to file additional
041230 -        authorization requested by Michelle, reported in Millie's
041231 -        letter to medical team on 090202 1028. ref SDS 51 FR6P
041233 -         ..
041234 -   47.  Made numerous calls to coordinate. ref SDS 51 FR6V  Florida in
041235 -        Kaiser Oncology Department, Walnut Creek CA advised that Pam in
041236 -        Kaiser Outside Referrals Department said the doctor did not
041237 -        enter a "code" in the Authorization form for hyperthermia
041238 -        treatment, so Pam is waiting to get the code when the doctor
041239 -        returns from traveling sometime in the next few days,
041240 -        ref SDS 50 1A5J, reported in Millie's letter to the medical
041241 -        team. ref SDS 51 FR7R
041243 -         ..
041244 -   48.  Called Outside Referrals and left a message that we need
041245 -        submission of authorization, so that I can get treatment today
041246 -        in time to be effective. ref SDS 50 W17K  Suggested Outside
041247 -        Referrals send written notice to Michelle Williams Jones at
041248 -        UCSF that authorization is on file at Kaiser, and will be
041249 -        submitted to UCSF, so that my treatment can be initiated
041250 -        concurrently. ref SDS 50 254F, reported in Millie's letter to
041251 -        the medical team. ref SDS 51 FR7U
041253 -  ..
041254 - Doctor responded to medical team about Millie's letter reporting
041255 - errors Kaiser causing confusion at UCSF that delays referral
041256 - authorization that may be holding up Millie's treatment, and saying...
041257 -
041258 -    1.  Subject:  Referral Authorization Requested by UCSF for Meeting Doctor Hsu
041259 -        Date: Mon, 2 Feb 2009 11:04:13 -0800
041266 -         ..
041267 -    2.  I dont think Dr. Hsu can see you today, not sure what is going
041268 -        on there.  We dont schedule or authorize for radiation
041269 -        oncology, so you need to communicate with them directly.  I
041270 -        know that Dr. Hsu is aware of your situation.
041271 -
041272 -            [...in anothere record today on 090202 1353 Krshna in
041273 -            Radiaton Oncology advises she spoke to Doctor Hsu in the
041274 -            morning and he was not aware of Millie's situation required
041275 -            timely treatment, and as a result, Krshna assigned Millie
041276 -            to the next available treatment time in the computer
041277 -            schedule 3 weeks away on 090219. ref SDS 52 S08N
041279 -             ..
041280 -            [...in another record today on 090202 1437 Millie letter
041281 -            to medical team discloses UCSF radiaton oncology schedules
041282 -            Millie for treatment in 3 weeks on 090219, ref SDS 53 R16W,
041283 -            because Doctor Hsu was not aware Millie requires urgent
041284 -            treatment. ref SDS 53 R23P
041286 -             ..
041287 -            [...in another record today on 090202 1437 Millie reports
041288 -            to medical team IBC disease increased significantly since
041289 -            meeting at UCSF on 090129, ref SDS 53 R23S, further notes
041290 -            that UCSF proposal to delay treatment seems shocking
041291 -            compared to progression of IBC shown by cancer marker CA
041292 -            15-3 303 on Kaiser lab on 090116, ref SDS 53 R23Y; asks
041293 -            medical team if delaying treatment to 090219 does not risk
041294 -            losing local control. ref SDS 53 R23V
041296 -             ..
041297 -            [On 090202 1932 letter from Doctor Rugo says Millie needs
041298 -            urgent treatment quickly in time to be effective recovering
041299 -            from 6th relapse of IBC. ref SDS 54 Y15J
041301 -             ..
041302 -            [On 090205 Doctor Hsu indicated being aware of Millie's
041303 -            situation from having received correspondence from medical
041304 -            team within the doctor patient partnership model.
041305 -            ref SDS 56 P35K
041306 -
041315 -
041316 -
041317 -
041318 -
041319 -
041320 -
041321 -
041322 -
041323 -
041324 -
041325 -
041326 -
041327 -
041328 -
0414 -