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 11:39 AM Monday;
Rod Welch
Millie notifies medical team problem solved Kaiser filed authorization for treatment.
1...Summary/Objective
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CONTACTS
SUBJECTS
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0403 -
0403 - ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 53 0000. ref SDS 51 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 - 49. On 090202 Doctor Rugo notified the medical team that Doctor Hsu
041255 - cannot see Millie on 090202; advises that Doctor Hsu is aware
041256 - of Millie's situation. ref SDS 53 V47L
041258 - ..
041259 - Millie notified medical team that referral authorization problem seems
041260 - to be solved with cooperation and proactive efforts of Pam in Kaiser
041261 - Outside Referral Department...
041262 -
041263 - 1. Subject: Problem Solved Referral Authorization Issued to UCSF for Meeting Doctor Hsu
041264 - Date: Mon, 02 Feb 2009 11:40:38 -0800
041274 - ..
041275 - 2. Just got a call from Pam in Outside Referrals at Kaiser.
041276 - (reported on 090202 1047) ref SDS 52 9Y5I
041278 - ..
041279 - 3. She needed to know the type of treatment I will get, and asked
041280 - if this is chemotherapy? [reported on 090202 1047]. ref SDS 52
041281 - LC7H Advised my treatment will be "hyperthermia," which is
041282 - performed in the Radiation Oncology department at UCSF. Pam
041283 - said Kaiser does not have a code for "hypethermia" nor for
041284 - "Radiation Oncology." Suggested using a code for "Radiology."
041285 - She said that will work. So problem solved. [reported on
041286 - 090202 1047]. ref SDS 52 QQ7N
041288 - ..
041289 - 4. Pam called back and wanted to know if this is in-patient or
041290 - out-patient treatment. Said I don't know, but radiation is
041291 - often out-patient care, and initial discussions did not
041292 - indicate I would have to stay in the hospital. Pam coded the
041293 - form for out-patient care. [reported in the record on 090202
041294 - 1047]. ref SDS 52 0256 Hope that works.
041295 -
041296 - [On 090202 1347 Krshna in UCSF Radiation Oncology
041297 - commends Pam's work in Kaiser Outside Referrals for
041298 - expediting authorization on Millie's urgent treatment in
041299 - just a few days, noting this often takes weeks.
041300 - ref SDS 54 SP6H
041302 - ..
041303 - 5. Pam gave me her address and a direct telephone number for her,
041304 - so further coordination can be expedited with Outside
041305 - Referrals, as needed.
041307 - ..
041308 - 6. If there is an address for Doctor Hsu and/or a staff person,
041309 - like Glenna, I can coordinate directly, so that your time is
041310 - not taken up. In any case, thanks very much for ensuring
041311 - timely action is taken. Hoping you will not hear from me again
041312 - until good news of a favorable response to treatment.
041313 -
041314 - [On 090203 Millie reports to medical team cannot
041315 - communicate with Radiation Oncology Department to confirm
041316 - planning for Millie's treatment. ref SDS 55 YQ6S
041318 - ..
041319 - [On 090205 Doctor Hsu provided address to faciliate
041320 - doctor patient partnership through timely communication
041321 - coordinating with the medical team. ref SDS 57 P35K
041322 -
041328 -
041329 -
041330 -
041331 -
041332 -
041333 -
041334 -
041335 -
041336 -
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041338 -
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041340 -
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0414 -