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 1, 2009 06:52 PM Sunday; Rod Welch

Millie letter UCSF IBC worse requests hyperthermia treatment tomorrow.

1...Summary/Objective
2...Pain Worsening Needs Medication
3...IBC Worsening Needs Immediate Treatment to Prevent Losing Control
4...Hyperthermia Doxil Treatment Schedule 090202 at UCSF Radiation Oncology
5...Top Priority Expedite Treatment Tomorrow at UCSF Recover IBC
6...Hyperthermia Treatment 6th Relapse IBC Start Tomorrow 090202 at UCSF
7...Lymphedema Increses Forced Remove Immobilizer to Prevent Cellulitis
8...Energy Recovers Sunitinib Side Effects Subside Feet Better
9...Side Effects Sunitinib Clinical Study Subsiding Millie Recovering Energy
10...Start Treatment Top Priority Prevent Cancer Cascade Out of Control


..............
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CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 44 0000. ref SDS 43 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 - Millie sent a letter to the medical team advising that Kaiser has
041169 - issued authorization for Millie's treatment at UCSF with hyperthermia
041170 - and Doxil, and requests timely implementation to prevent cancer from
041171 - cascading out of control...
041172 -
041173 -    1.  Subject: UCSF Treatment Plan Hyperthermia Doxil
041174 -        Date: Sun, 01 Feb 2009 19:03:34 -0800
041183 -         ..
041184 -    2.  Thanks very much for your letter last night advising that
041185 -        Kaiser authorization was submitted on 090130, ref SDS 44 GV4M,
041186 -        for me to have hyperthermia treatment at UCSF prescribed by
041187 -        Doctor Rugo in her letter to you on 090129. ref SDS 43 TZ6H
041189 -         ..
041190 -    3.  I am very grateful.  Thanks to Krshna at UCSF [reported on
041191 -        090130, ref SDS 41 NM5H], and to Arlette in your office for
041192 -        timely coordination [also reported on 090130, ref SDS 42 PPYY].
041193 -
041194 -           [On 090202 Michelle at UCSF called and reported Kaiser has
041195 -           not submitted authorization for Millie's treatment on
041196 -           referral, and so UCSF cannot schedule urgent treatment.
041197 -           ref SDS 48 9Y5I
041199 -            ..
041200 -           [On 090202 1028 Millie sent a letter to the medical team
041201 -           advising prior notice that Kaiser sent authorrization for
041202 -           Millie's treatment was changed, ref SDS 50 GV4M, and
041203 -           Michelle indicates she would call and tell Doctor Rugo that
041204 -           Kaiser has to send authorization to Michelle as well as
041205 -           Krshna in Doctor Hsu's office at radiation oncology.
041206 -           ref SDS 50 FR6S
041208 -            ..
041209 -           [On 090202 Kaiser reports doctor's authorization for
041210 -           Millie's urgent treatment on referral to UCSF has been
041211 -           witheld until the doctor, who is out of town, returns to the
041212 -           office and can provide a code to complete the referral form.
041213 -           ref SDS 49 J15F
041214 -
041216 -  ..
041217 - Pain Worsening Needs Medication
041218 - IBC Worsening Needs Immediate Treatment to Prevent Losing Control
041219 - Hyperthermia Doxil Treatment Schedule 090202 at UCSF Radiation Oncology
041220 -
041221 -
041222 -    4.  IBC seems to be getting worse by the hour.  I'm afraid to look
041223 -        at my chest.  As noted in my letter to the medical team on
041224 -        090130, I am taking Tylenol and Vicadin for pain relief
041225 -        prescribed for my shoulder.  This is becoming less effective
041226 -        for pain from IBC on my chest [noted by Tara during examination
041227 -        at UCSF citing rising vitals signal rising pain, ref SDS 43
041228 -        AY7T, further shown by Doctor Rugo report of rising pain in a
041229 -        letter to primary care physician requesting referral for
041230 -        treatment with hyperthermia and Doxil, ref SDS 43 TZ6H - and
041231 -        following up Millie's letter to medical team on 090128
041232 -        reporting rising pain from IBC. ref SDS 37 2S8X]  Should I
041233 -        increase the dose above prescribed levels?  On a scale of 1 -
041234 -        10 pain is 2 or 3; so it is not severe like the dislocated
041235 -        shoulder last week (that was a "15").  IBC hurts most when the
041236 -        skin squeezes slightly, as in reaching across my chest, or
041237 -        rolling over in bed.
041238 -
041239 -           [On 090201 Millie emotinoal trauma relieved medical team
041240 -           plans for treatment in time to be effective relieving
041241 -           severe symptoms of 6th relapse IBC. ref SDS 46 5R3T
041243 -            ..
041244 -           [On 090201 Doctor Johnson sent a leter advising Millie that
041245 -           he is out of town and cannot respond until 090303.
041246 -           ref SDS 47 Y35M
041248 -            ..
041249 -           [On 090202 1437 Millie reports to medical team IBC disease
041250 -           progressed significantly with rising pain, since meeting at
041251 -           UCSF on 090129, ref SDS 51 R23S, when hyperthermia
041252 -           treatment was prescribed to achieve local control in time
041253 -           to be effective because communication mishaps delayed
041254 -           treatment a week, reported on 090130 1722. ref SDS 43 AY8Q
041256 -            ..
041257 -           [On 090203 Millie experiences rising pain that interrupts
041258 -           sleep at night. ref SDS 53 KE5I
041260 -            ..
041261 -           [On 090203 1417 Millie reports pain control with Tylenol
041262 -           and Vicadin using increased dose above prescribed levels;
041263 -           asks for confirmation. ref SDS 52 IS6U
041265 -            ..
041266 -           [On 090204 1622 Millie's letter to medical team reported
041267 -           having called Kaiser on 090203 for pain relief interrupting
041268 -           sleep from worsening IBC and recovering from shoulder
041269 -           injury, as reported in the record on 090203 2217,
041270 -           ref SDS 53 KE5I; Millie advised on 090204 1622 implementing
041271 -           Kaiser instructions, ref SDS 54 135F, to double the dose
041272 -           prescribed for pain medication and the doctor will
041273 -           prescribe low-dose morphine, ref SDS 54 D64W, resolving
041274 -           fears of over medicating by taking only 30% of prescribed
041275 -           dose levels, also reported on 090203 2217. ref SDS 53 L74H
041276 -
041278 -  ..
041279 - Top Priority Expedite Treatment Tomorrow at UCSF Recover IBC
041280 - Hyperthermia Treatment 6th Relapse IBC Start Tomorrow 090202 at UCSF
041281 -
041282 -
041283 -    5.  For Doctor Rugo, can I come in to UCSF tomorrow morning to
041284 -        expedite hyperthermia treatment?  I don't mind standing by in
041285 -        the cafeteria until Doctor Hsu can fit me in.  (sending copy to
041286 -        Glenna because she has coordinated when Doctor Rugo is out of
041287 -        the office, and at this time another coordinator has not been
041288 -        assigned.)
041290 -         ..
041291 -    6.  Krshna, in Doctor Hsu's office  indicated last Friday [on
041292 -        090130] that, if she had authorization [from Kaiser], I could
041293 -        get treatment tomorrow on Monday. ref SDS 41 NM5H  I called and
041294 -        left a message late Friday afternoon that Arlette reported
041295 -        authorization was approved, ref SDS 41 PPYR, but I did not hear
041296 -        back from Krshna.  So, things may already be set up for Monday.
041297 -
041298 -            [On 090201 Doctor reports communicating with Doctor Hsu
041299 -            using email notifying Doctor Hsu Millie's report of IBC
041300 -            increasing in severity and pain, and telling Millie not to
041301 -            come to UCSF tomorrow on 090202, and that Doctor Hsu is
041302 -            working to scheduling Millie for treatment in time to be
041303 -            effective. ref SDS 45 GV4M
041305 -             ..
041306 -            [On 090201 Millie emotinoal trauma relieved medical team
041307 -            plans for treatment in time to be effective relieving
041308 -            severe symptoms of 6th relapse IBC. ref SDS 46 5R3T
041310 -             ..
041311 -            [On 090201 Doctor Johnson sent a leter advising Millie that
041312 -            he is out of town and cannot respond until 090303.
041313 -            ref SDS 47 Y35M
041314 -
041315 -
041317 -  ..
041318 - Lymphedema Increses Forced Remove Immobilizer to Prevent Cellulitis
041319 -
041320 -
041321 -    7.  Today, I had to remove the immobilizer on the right arm [see
041322 -        Kaiser prescription on 090129, ref SDS 40 YU8W], because
041323 -        pressure on my chest (this is a complex harness) caused my left
041324 -        arm to start swelling from lymphedema.  I found an alternate
041325 -        sling here at the house used for another injury a few years
041326 -        ago.  It does not wrap around my waist, and so relieves
041327 -        pressure on lymphatics.
041328 -
041329 -            [On 090201 Doctor Johnson sent a leter advising Millie that
041330 -            he is out of town and cannot respond until 090303.
041331 -            ref SDS 47 Y35M
041333 -             ..
041334 -            [On 090203 lymphedema mostly subsided 2 days after removing
041335 -            the harness-sling. ref SDS 53 RN68
041337 -             ..
041338 -            [On 090205 lymphedema recurrence from overuse of left arm
041339 -            because right arm healing from dislocated shoulder.
041340 -            ref SDS 55 9Y5I
041342 -         ..
041343 -    8.  Temperature is 97.4, and no evidence of Cellulitis, which has
041344 -        often occurred with lymphedema.  I assume Keflex is only needed
041345 -        if Cellulitis and temperature occur.
041346 -
041348 -  ..
041349 - Energy Recovers Sunitinib Side Effects Subside Feet Better
041350 - Side Effects Sunitinib Clinical Study Subsiding Millie Recovering Energy
041351 -
041352 -
041353 -    9.  Good news... my feet are better today.  I went hiking and did
041354 -        the 3 mile flat course.  Energy is getting back to normal.
041356 -         ..
041357 -   10.  I put the lymphedema sleeve on the left arm and will elevate,
041358 -        per prior guidance.
041359 -
041361 -  ..
041362 - Start Treatment Top Priority Prevent Cancer Cascade Out of Control
041363 -
041364 -
041365 -   11.  Priority is to start treatment on IBC to prevent cancer from
041366 -        cascading out of control.  That's my big worry now.
041367 -
041374 -
041375 -
041376 -
041377 -
041378 -
041379 -
041380 -
041381 -
041382 -
041383 -
041384 -
041385 -
041386 -
041387 -
041388 -
041389 -
0414 -