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: December 2, 2008 02:53 AM Tuesday; Rod Welch

Millie letter to medical team reports response to sunitinib treatment.

1...Summary/Objective


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SUBJECTS
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0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 21 0000. ref SDS 17 0000.
040502 -
040503 -
040504 -
040505 -
040506 -
040508 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Background is reported on 081117, ref SDS 17 FQ5I, when Millie sent a
040902 - letter to Glenna asking about prescribing Millie's chemotherapy drugs
040903 - needed on Friday, 081128, because Thursday is a holiday. ref SDS 17
040904 - PR8U
040906 -  ..
040907 - On 081121 Millie submitted another letter to Glenna with a copy to the
040908 - medical team reminding again about prescribing drugs in time to start
040909 - treatment on 081128. ref SDS 20 0T6L  Millie has not received response
040910 - showing work has been done to accomplish procurement to start
040911 - treatment with cyclosphamide and Methotrexate, beginning on 081128.
040913 -  ..
040914 - On 081125 Millie notified medical team about initial response to
040915 - treatment. ref SDS 21 XX3W
040917 -  ..
040918 - Today, Millie reported issues that have occurred getting treatment
040919 - with sunitinib protocol.  Decided not to raise problem of failed drug
040920 - procurement, since there are a lot of other important issues.
040922 -  ..
040923 - Included Doctor Stritter in the distribution, per planning on 081018,
040924 - ref SDS 8 1Y4G, and confirmed in the doctor's letter to Millie on
040925 - 081114. ref SDS 14 FJ5J
040927 -  ..
040928 - On 081017 Doctor Rugo reported difficulty handling comprehensive
040929 - reporting on patient history with Treo technology. ref SDS 6 215I
040930 - Since Millie's case is complex, did not include Doctor Rugo in
040931 - distribution.  UCSF staff can brief the doctor in a manner that fits
040932 - time and work practice...
040934 -  ..
040935 - Letter to medical team says...
040936 -
040937 -    1.  Subject: Sunitinib Treatment Initial Success
040938 -        Date: Tue, 02 Dec 2008 03:01:06 -0800
040953 -         ..
040954 -    3.  I reported on 081125 response to treatment with the sunitinib
040955 -        metronomic protocol, ref SDS 21 XX3W, started 2 weeks earlier
040956 -        on 081114. ref SDS 13 505G  The next day examination by Tara
040957 -        and Bridget [on 081126], found considerable improvement based
040958 -        on reduced IBC rash intensity at all sites, which had been one
040959 -        big "mess!" Now, even the left arm looks better.
040961 -         ..
040962 -    4.  Good news...  Over the next several days, IBC further subsided
040963 -        substantially so we are back to a few lightly colored rash
040964 -        sites, the approximate condition on 060711 at the time of the
040965 -        3rd IBC relapse. ref SDS 2 025H
040967 -  ..
040968 - This supports Doctor's Rugo treatment plan on 081113 starting Millie
040969 - on sunitinib, ref SDS 12 8Q8P, implementing prescription on 081024 by
040970 - the primary care physician at Kaiser. ref SDS 9 XZ8W
040971 -
040972 -            [On 081218 medical team finds very substantial recovery
040973 -            from IBC, ref SDS 42 VD4F, confirmed with examination by
040974 -            the doctor near the end of the meeting, ref SDS 42 1G6J;
040975 -            UCSF proposes changing treatment plan to maintain recovery
040976 -            and reduce side effects. ref SDS 42 QW48
040978 -             ..
040979 -            [On 081223 Millie's letter congratulatges medical team
040980 -            engineering recovery from 5th relapse of IBC. ref SDS 44
040981 -            2I8H
040983 -             ..
040984 -            [On 081223 Millie's letter to medical team cites findings
040985 -            on 081218 of recovery from IBC, and which are reported in
040986 -            the letter to the medical team today. ref SDS 44 BV6R
040988 -             ..
040989 -            [On 081223 Millie's letter to medical team reports patient
040990 -            willing to maintain dose of sunitinib and reduce or end
040991 -            treatment with chemotherapy cyclophosphamide in order to
040992 -            maintain progress recovering from IBC and to reduce side
040993 -            effects of chemotherpay. ref SDS 44 BW3V
040995 -             ..
040996 -            [On 090715 0224 Millie had similar experience with MPA
040997 -            protocol recovering from 7th relapse of cancer; IBC got
040998 -            much worse after starting treatment on 090616, and 3-weeks
040999 -            later began to improve, but still looked worse after
041000 -            4-weeks of treatment, than when treatment started on
041001 -            090616. ref SDS 45 0I4Y
041003 -  ..
041004 - Millie's letter to the medical team continues...
041005 -
041006 -    5.  Seems like the lump in the left supraclavicular has gotten
041007 -        smaller, which can be checked with the next CT test.
041009 -         ..
041010 -    6.  This is the best condition since total elimination of IBC rash
041011 -        reported on 050610 after treatment for several months (3
041012 -        cycles) with capacitabine and Taxotere. ref SDS 1 025H
041014 -         ..
041015 -    7.  While there seems to be a slowing of rash reduction the past
041016 -        few days, I am thrilled with response so far.  I was
041017 -        disappointed that pathology for the biopsy on 081107 was
041018 -        reported continuing triple negative, cited on 081120.
041019 -        ref SDS 18 LF4X
041021 -         ..
041022 -    8.  The fact that no findings are presented that support the
041023 -        conclusion of triple negative leaves room for inquiry about the
041024 -        specific valuations derived from the study. ref SDS 18 QQ3K
041026 -         ..
041027 -    9.  By copy to Doctor Daamen will inquire, with understanding that
041028 -        the lab may not retain details of findings.
041029 -
041030 -            [...in another record today on 081202 Millie requested
041031 -            findings from the pathology report, ref SDS 26 UV5I, for
041032 -            the biopsy on 081107 that establish triple negative status.
041033 -            ref SDS 26 GZ3W
041035 -         ..
041036 -   10.  In any case, I had worried that triple negative might reduce
041037 -        the targets for the "targeted" sunitinib treatment.  Now with
041038 -        positive results, I am very much relieved.  Like everyone says,
041039 -        cancer is an emotional roller coaster.
041041 -         ..
041042 -   11.  The only substantial side effect from the sunitinib metronomic
041043 -        protocol with cyclophosphamide and methotrexate has been
041044 -        fatigue, shown in patient history reported today. ref SDS 25
041045 -        LF8M
041047 -         ..
041048 -   12.  Will try going to the gym tomorrow, and then some hiking.
041050 -         ..
041051 -   13.  Can anything be done to increase energy?  When I was treated
041052 -        with cetuximab and Carboplatin I got a big boost for a day or
041053 -        so from support treatments.  Any chance this can help now?
041054 -
041055 -           [On 081203 Millie had a blood test at Kaiser to evaluate
041056 -           chronic fatigue reported today. ref SDS 27 7N82
041058 -            ..
041059 -           [On 081205 Millie notified medical team lab results show all
041060 -           blood counts very low, ref SDS 30 TT8P; Millie had Neupogen
041061 -           treatments to restore blood counts and recover from chronic
041062 -           fatigue, ref SDS 31 KV84; nurse advised that Millie's blood
041063 -           counts are below a level when patients get a 3rd Neupogen
041064 -           treatment. ref SDS 31 X35F
041066 -            ..
041067 -           [On 081217 Millie's letter submitting agenda for meeting the
041068 -           next day on 081218 again reports difficulty tolerating
041069 -           current treatments. ref SDS 39 YJ6R
041071 -            ..
041072 -           [On 081218 Millie's record of daily treatments with
041073 -           sunitinib protocol explains greater detail on debilitating
041074 -           side effects that make tolerating treatments very
041075 -           difficult. ref SDS 40 6E7G
041077 -            ..
041078 -           [On 081218 labs at UCSF for examination starting 2nd cycle
041079 -           of sunitinib protocol show CBC blood counts again very low,
041080 -           ref SDS 41 075H, with platelets 64, ref SDS 41 7Z6N,
041081 -           attributed for causing new sunitinib side effect of
041082 -           nosebleed, ref SDS 43 GF4S, and NEUTS 0.74 have again fallen
041083 -           substantially, ref SDS 41 QY6H; as a result during the
041084 -           meeting at UCSF on 081218, treatment regimen was changed;
041085 -           all treatment was paused for 7 days until 081226;
041086 -           Methotrexate ended entirely; consideration will be made to
041087 -           reduce dose for sunitinib, ref SDS 42 QW48; confirmed in
041088 -           Millie's letter to the medical team on 081218. ref SDS 43
041089 -           GF4V
041091 -         ..
041092 -   14.  So, I feel like the "cat who swallowed the canary," perhaps
041093 -        having dodged a "big bullet" beginning recovery from the 5th
041094 -        relapse of IBC.  Congratulations to the medical team, including
041095 -        Doctor Rugo for designing and prescribing sunitinib treatment,
041096 -        and to Doctor Johnson as the architect of my care giving timely
041097 -        notice to UCSF on 080829 to change treatment, ref SDS 4 PX5V,
041098 -        reported to medical team in Millie's letter also on 080829.
041099 -        ref SDS 5 RP9W], and shepherding me through many tests at
041100 -        Kaiser required by the work plan [and listed on 081029 1345,
041101 -        ref SDS 10 YS6L].  Brigid Miralda and Glenna have been terrific
041102 -        coordinating and monitoring progress, and Tara has been
041103 -        outstanding developing a thorough record to assess recovery.  I
041104 -        am blessed and thankful beyond measure.
041105 -
041106 -           [On 081217 Millie reported further improvment recovering
041107 -           from cancer in letter to prepare the medical team for a
041108 -           meeting on 081218. ref SDS 39 YJ4V
041110 -            ..
041111 -           [On 081218 examination at UCSF confirms substantial recovery
041112 -           from Millie's 5th relapse of cancer with the sunitinib
041113 -           protocol. ref SDS 43 GF8V
041115 -         ..
041116 -   15.  There have been no photographs taken so far.  Has this
041117 -        diagnostic been dropped from the sunitinib protocol?
041119 -         ..
041120 -   16.  Do we need to schedule another CT test on 081219, 6 weeks after
041121 -        the last test on 081107?  By copy alerting Doctor Johnson, and
041122 -        Dennis in the CT department, and Paula in the Infusion Clinic
041123 -        to specify work with the Power Port.  Everyone did a terrific
041124 -        job last time, with just a few communication snafus.  Also need
041125 -        to alert the IS folks.  Glenna, please confirm 081219 is the
041126 -        date for the next CT test, in light of the shift in scheduling,
041127 -        discussed below (see penultimate paragraph, ref SDS 0 AT9T).
041129 -  ..
041130 - CT tests required by sunitinib prototol every 6 weeks, reported from
041131 - review of Consent documents on 081017. ref SDS 7 NK5I
041133 -  ..
041134 - Millie's letter to the medical team continues...
041135 -
041136 -   17.  By copy notifying Gloria at Kaiser's Coagulation Control Clinic
041137 -        that I will get a blood test for INR only out of sequence on
041138 -        Thursday 081204 for INR 3.4 to evaluate slight rise above the
041139 -        target range for the test at UCSF on 081126, ref SDS 22 K66J,
041140 -        and citing Gloria's analysis at that time on 081126 that there
041141 -        is not enough data on sunitinib to assess affects on Coumadin,
041142 -        so we will use trial and error to adjust the dose. ref SDS 24
041143 -        J45H
041144 -
041145 -            [On 081203 Millie had her blood drawn at the Kaiser
041146 -            Coagulation Control Clinic in Martinez CA for evaluating
041147 -            stability of INR blood counts that signal effectiveness of
041148 -            daily Coumadin treatments for pulmonary embolism, taken
041149 -            with daily sunitinib and cyclophosphamide treatments for
041150 -            cancer. ref SDS 27 7N82
041152 -         ..
041153 -   18.  This implements Tara's guidance during the meeting at UCSF on
041154 -        081126, when she recommended getting support for
041155 -        uncharacteristic rise of INR.
041157 -         ..
041158 -   19.  I got a flu shot at Kaiser a month or so ago.  I still seem to
041159 -        have sniffles, like a cold or something.  Worried about low
041160 -        blood counts taking chemo everyday.  Rising fatigue may reflect
041161 -        low blood counts [shown by patient history case study on
041162 -        081201, ref SDS 25 LF8M].  During the meeting on 081126 the
041163 -        medical team decided to defer Neupogen treatment because NEUTS
041164 -        was 1.50 (ANC 1500 at Kaiser), ref SDS 22 QY6H, the minimum
041165 -        level for safe [chemotherapy] treatment.  Since there has been
041166 -        no chemo since 081023, I had expected an increase from NEUTS
041167 -        1.67, rather than a slight decrease.
041169 -         ..
041170 -   20.  With chemotherapy, albeit low dose, do we need an interim lab?
041171 -        Should consideration be given to Neupogen treatment scheduled
041172 -        for this Friday and Saturday, or should I go ahead and cancel
041173 -        Neupogen treatments at Kaiser again this week?
041174 -
041175 -            [On 081203 Millie went to Kaiser for blood test ordered on
041176 -            081128 by the Coagulation Control Clinic to evaluate INR,
041177 -            ref SDS 27 7N82, planned today, per above, ref SDS 0 AT7W;
041178 -            she was told that the primary care physician also ordered a
041179 -            wide range of tests, including CBC to test NEUTS (ANC at
041180 -            Kaiser, ref SDS 27 TG8M, which responds to Millie's letter
041181 -            to the medical team today. ref SDS 0 AT8U
041183 -             ..
041184 -            [On 081205 Millie notified medical team about low blood
041185 -            counts. ref SDS 30 YF5I
041187 -             ..
041188 -            [On 081205 Kaiser calculated NEUTS 0.624 and advised this
041189 -            is very low, ref SDS 31 CH40; review shows 0.624 is the
041190 -            lowest level in patient history. ref SDS 29 EC5N  Kaiser
041191 -            gave Millie Neupogen treatment to increase blood counts,
041192 -            ref SDS 31 CH6X; the nurse recommended asking the medical
041193 -            team about ordering a 3rd Neupogen treatment next week and
041194 -            another blood test to complement the 2 treatments already
041195 -            prescribed. ref SDS 31 X35F
041197 -             ..
041198 -            [On 081205 UCSF responds to the letter on 081202 (today,
041199 -            ref SDS 0 AT8U, and the follow up on 081205, ref SDS 30
041200 -            YF5I - the doctor notified Millie that Neupogen is needed
041201 -            when neutrophils are low. ref SDS 32 JE5I
041203 -             ..
041204 -            [On 081205 Millie responded to UCSF letter on 081205,
041205 -            ref SDS 33 VM7G, advising that neutrophils were low in the
041206 -            lab on 081203, ref SDS 33 NN4S, and provided background on
041207 -            Kaiser treatments for Neupogen. ref SDS 33 NN5T
041209 -             ..
041210 -            [On 081206 Millie submitted the report to UCSF for the lab
041211 -            performed at Kaiser on 081203, ref SDS 27 TG8M, and
041212 -            received from Kaiser during tretment on 081205, ref SDS 29
041213 -            CT3K, and then transmitted to UCSF, ref SDS 34 WJ8K, for
041214 -            evaluation of neutrophils on requirements for a 3rd
041215 -            Neupogen treatment and and another lab test. ref SDS 34
041216 -            2K5U
041218 -             ..
041219 -            [On 081206 Millie had the second Neupogen treatment at
041220 -            Kaiser. ref SDS 35 UZ7K
041222 -             ..
041223 -            [On 081218 labs at UCSF for examination starting 2nd cycle
041224 -            of sunitinib protocol show CBC blood counts again very low,
041225 -            ref SDS 41 075H, with platelets 67, ref SDS 41 7Z6N,
041226 -            attributed for causing new sunitinib side effect of
041227 -            nosebleed, ref SDS 43 GF4S, and NEUTS 0.74 have again
041228 -            fallen substantially, ref SDS 41 QY6H; as a result
041229 -            treatment regimen changed; all treatment was paused for 7
041230 -            days until 081226; Methotrexate ended entirely;
041231 -            consideration will be made to reduce dose for sunitinib.
041232 -            ref SDS 43 GF4V
041234 -         ..
041235 -   21.  Scheduling meetings and labs at UCSF could not be reviewed
041236 -        during the recent visit on 081126.  Bridget planned to consult
041237 -        with Glenna, who was called away to another meeting that day,
041238 -        about updating my schedule which continues on Thursdays at 0800
041239 -        and 0830, but requires eliminating some activities and adding
041240 -        others based on the change from weekly cetuximab to sunitinib 3
041241 -        week cycles.
041242 -
041243 -            [On 081203 Glenna called and discussed scheduling,
041244 -            ref SDS 28 YZ5I; she then submitted a letter confirming the
041245 -            schedule for Millie's work with UCSF on the sunitinib
041246 -            protocol. ref SDS 28 4P7N
041248 -         ..
041249 -   22.  It looks like the next meeting is 081218, and the follow up is
041250 -        on 090108.  If this is correct, then the CT test perhaps should
041251 -        be changed to 010902, the week before for review the following
041252 -        week, rather on 081219, per above. ref SDS 0 AT7T  This 2 week
041253 -        shift reflects the change from 2 week loading dose to 3 week
041254 -        regular cycles.  Please let me know for coordinating with
041255 -        Kaiser.
041257 -  ..
041258 - CT tests required by sunitinib prototol every 6 weeks, reported from
041259 - review of Consent documents on 081017. ref SDS 7 NK5I
041260 -
041261 -            [On 081203 Glenna submitted a letter notifying the medical
041262 -            team that the next CT test is needed for the meeting at
041263 -            UCSF on 090108. ref SDS 28 4P7N
041265 -             ..
041266 -            [On 081209 Millie letter to medical team requesting
041267 -            coordinating schedule for CT test on 081230, 081231, or
041268 -            090102 in time for meeting with medical team at UCSF on
041269 -            090108. ref SDS 36 YL9I
041271 -             ..
041272 -            [On 081210 the doctor called and discussed scope of CT test
041273 -            for referral to CT department scheduled on 081230 1020.
041274 -            ref SDS 37 H44N
041276 -             ..
041277 -            [On 081210 Millie received a letter from the doctor
041278 -            confirming the CT test at Kaiser on 081230 1020.
041279 -            ref SDS 38 H48N
041281 -  ..
041282 - Millie's letter to medical team continues...
041283 -
041284 -   23.  Thanks again for great work by everyone.
041285 -
041291 -
041292 -
041293 -
041294 -
041295 -
041296 -
041297 -
041298 -
041299 -
041300 -
041301 -
041302 -
041303 -
041304 -
041305 -
041306 -
0414 -