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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CONTACTS
SUBJECTS
Default Null Subject Account for Blank Record
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 -
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041292 -
041293 -
041294 -
041295 -
041296 -
041297 -
041298 -
041299 -
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041301 -
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0414 -