Welch Company
San Francisco, CA


S U M M A R Y


DIARY: May 1, 2010 10:37 AM Saturday; Rod Welch

Letter to medical team on work plan for Millie's 11th relapse.

1...Summary/Objective


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SUBJECTS
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0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 17 QX4O.
040502 -
040503 -
040504 -
040505 -
040507 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Millie is concerned about difficulty tolerating Abraxane chemotherapy,
040902 - and that her cancer seems to be progressing, reported in examination
040903 - by Doctor Johnson at Kaiser on 100427.  The blood test on 100426,
040904 - showd the cancer marker CA 14-3 424 has increased significantly again
040905 - to the highest level in patient history, reported on 100428 0800.
040906 - ref SDS 17 QX4O ref SDS 17 QX4O
040908 -  ..
040909 - On 100427, Doctor Johnson approved Millie to continue with the 3rd
040910 - cycle of Abraxane, and for her trip on 100515, but at that time he was
040911 - not aware of a significant increase in the cancer marker to CA 15-3
040912 - 424.
040914 -  ..
040915 - Millie was encouraged during the meeting on 100427 from the doctor
040916 - indicating Millie needs treatment "targeted" to her cancer, since this
040917 - strategy of therapy does not cause debilitating side effects, and does
040918 - not lower blood counts, so Millie will not need Neupogen, which will
040919 - further reduce pain and suffering from treating her cancer.  The work
040920 - plan on 100427 was to implement the new strategy after the 3rd cycle
040921 - of Abraxane, and when Millie returns from her trip, ref SDS 16 SJ6N,
040922 - with the new treatment beginning on 100602.
040924 -  ..
040925 - Concern today is whether the team will be prepared in time to make
040926 - this change, since previous changes in treatment have taken many weeks
040927 - to accomplish after hugely complex array of tasks.  Waiting until the
040928 - day new treatment is needed to begin the process therefore presents
040929 - significant risk fo Millie's patient profile to recover from the 11th
040930 - relapse of cancer, as related above. ref SDS 0 TK5I
040932 -  ..
040933 - Since she does not feel well physically from pain and suffering due to
040934 - cancer, and intolerable side effects of both chemotherapy and Neupogen
040935 - needed to maintain blood counts in order to get chemotherapy treatment
040936 - and since cancer seems to be progressing, and since the medical team
040937 - has failed to provide a work plan comparing trade-offs for available
040938 - treatments targeted to her cancer, that will be effective and avoid
040939 - difficult side effects, like cetuximab, Millie is very discouraged
040940 - that the team will provide standard of care for her patient profile
040941 - in time to be effective.
040943 -  ..
040944 - Severe physical durress causes emotional pain and suffering of
040945 - abandonment and hopelessness.  Millie feels today that since the
040946 - medical team has failed to respond to numerous requests for comparing
040947 - trade-offs on available drugs to optimize her recovery that this there
040948 - are no treatments that can help her recover from the 11th relapse of
040949 - cancer.
040951 -  ..
040952 - She is especially worried about going on her trip scheduled for 100515
040953 - and suffering pain with cancer cascading out of control because
040954 - treatment is paused for 3-weeks, since when treatment was paused for
040955 - 3-weeks in February, her cancer got much worse, so the doctor changed
040956 - treatements, reported on 100218 1000. ref SDS 10 PP5Y
040958 -  ..
040959 - Millie sent a letter to the medical team asking for a work plan to
040960 - recover from the 11th relapse, caused by UCSF medical mistakes
040961 - providing radiation services on referral from Kaiser, which have
040962 - caused her cancer to spread...
040963 -
040964 -    1.  Subject: Cancer 11th Relapse Requires Targeted Therapy Overcome Resistance to Chemotherapy
040965 -        Date: Sat, 01 May 2010 11:49:06 -0700
040978 -         ..
040979 -    2.  I was very pleased to hear in the meeting at Kaiser on Tuesday,
040980 -        100427, that you have a new strategy to treat my 11th relapse
040981 -        with agents "targeted" to cancer.  You explained that after 10
040982 -        relapses my cancer has mutated to resist chemotherapy,
040983 -        therefore Kaiser's standard of care requires "targeting" the
040984 -        genetic profile of my cancer in order for treatment to be
040985 -        effective. ref SDS 16 VL6N
040987 -         ..
040988 -    3.  This is evident from experience with Gemzar, Navelbine, and now
040989 -        Abraxane.  Gemzar was effective for 5 cycles, Navelbine
040990 -        recovery lasted 3 cycles.  Abraxane [planned on 091112,
040991 -        ref SDS 9 KB4F, and started on 100302, ref SDS 14 625I], has
040992 -        been effective for only 2 cycles.  Recent soaring cancer marker
040993 -        for the lab this past Monday on 100426, shows CA 15-3 424 has
040994 -        now increased to the highest level in patient history, see case
040995 -        study on 090323. ref SDS 4 J13O
040997 -         ..
040998 -    4.  During the meeting at Kaiser on 100427, I reported concern
040999 -        about new IBC bumps on my right side. ref SDS 16 SO8J  Your
041000 -        examination found an anomaly with cancer well controlled on the
041001 -        left side, ref SDS 16 SO92, which was treated on referral from
041002 -        Kaiser with radiation and hyperthermia by Doctor Hsu at UCSF,
041003 -        during February and March last year. ref SDS 2 0001  On 090423
041004 -        Doctor Hsu reported that "nothing can grow" in the areas he
041005 -        treated [confirmed in Millie's letter to the medical team on
041006 -        090423 2337. ref SDS 6 ZL9V ref SDS 6 ZL9V, and citing the
041007 -        meeting at UCSF earlier that day. 090423 0830, ref SDS 5 V46K].
041009 -         ..
041010 -    5.  Doctor Hsu later reported on 090609 that UCSF made a mistake
041011 -        and did not treat cancer in my breastbone area. ref SDS 7 W65W
041013 -         ..
041014 -    6.  Since my right side did not have cancer, UCSF did not treat the
041015 -        right side with radiation and hyperthermia.  Therefore cancer
041016 -        has spread [from the breastbone area that was not treated] into
041017 -        the right side where it can grow, under Doctor Hsu's analysis.
041019 -         ..
041020 -    7.  Thus, during examination this past Tuesday on 100427, you
041021 -        observed numerous new IBC bumps signaling progression of cancer
041022 -        on the right side, while the left side is stable to improved.
041023 -        ref SDS 16 SO92  My left arm shows reduced swelling, while the
041024 -        right arm shows significant swelling from IBC infecting
041025 -        lymphatics on the right side.
041027 -         ..
041028 -    8.  Since Tuesday, I am concerned progression has increased, and so
041029 -        fear losing control unless appropriate treatment is provided in
041030 -        time to be effective.
041031 -
041032 -            [On 100503 1522 Millie notifies medical team that time of
041033 -            the essence to get the next treatment going. ref SDS 19
041034 -            TD5W
041036 -         ..
041037 -    9.  Initially, on 090609, Doctor Hsu prescribed "targeted"
041038 -        treatment with MPA at UCSF to correct the mistake that caused
041039 -        progression of cancer. ref SDS 7 W66W  [...A week later...]
041040 -        Doctor Rugo reported on 090616 that you approved UCSF providing
041041 -        care to correct the problem, and that everybody at Kaiser and
041042 -        UCSF is "on board," ref SDS 8 D647, for using [...first MPA,
041043 -        then PARP...] agents targeted to treat my cancer as a chronic
041044 -        disease, ref SDS 8 KD6L, which you had prescribed for many
041045 -        months. [...see case study on 090213. ref SDS 3 PT3N...]
041047 -         ..
041048 -   10.  At that time on 090616, my care was transferred to UCSF, also,
041049 -        reported on 090616, so that UCSF could perform the work for me
041050 -        to recover from medical mistakes providing radiation and
041051 -        hyperthermia during February and March on referral from Kaiser.
041052 -        ref SDS 8 EE70
041053 -
041054 -            [On 100501 2017 Doctor Rugo reports plans to collaborate
041055 -            with Doctor Johnson at Kaiser on work plan for Millie to
041056 -            recover from 11th relapse of cancer caused by UCSF medical
041057 -            mistakes. ref SDS 18 HH4I
041059 -             ..
041060 -            [On 100505 0411 letter to medical team confirms UCSF work
041061 -            plan for Doctor Rugo to call and collaborate with Doctor
041062 -            Johnson on prescribing Millie's next treatment. ref SDS 23
041063 -            8J5W
041065 -         ..
041066 -   11.  After the first cycle with MPA at UCSF, Doctor Rugo was
041067 -        concerned that MPA may have caused breathing problems, since
041068 -        pulmonary embolism is a low risk for MPA.  She proposed
041069 -        changing treatment to Gemzar that avoids risk of PE.  Doctor
041070 -        Rugo asked me to get this treatment at Kaiser, because she
041071 -        believed the cost of care would be less, and so this would save
041072 -        UCSF money on correcting medical mistakes from radiation
041073 -        treatments that cause my cancer to progress.  I agreed to get
041074 -        treatment at Kaiser with Gemzar on medical advice that this was
041075 -        the best course of care, and would mitigate damages for UCSF.
041077 -         ..
041078 -   12.  It turned out that radiation at UCSF, and not MPA, caused lung
041079 -        injuries, which Doctor Mates at Kaiser said might eventually
041080 -        recover.  The most recent CT test at Kaiser reported reduced
041081 -        ground glass nodules, ref SDS 12 ON6Y, and your examination on
041082 -        Tuesday found that Doctor Mates was correct:  my lungs have
041083 -        recovered and I am now breathing fine [reported on 100427 0830.
041084 -        ref SDS 16 TT6K
041086 -         ..
041087 -   13.  The only problem to solve is cancer progressing in my skin on
041088 -        the right side caused by medical mistakes at UCSF, reported on
041089 -        100301, ref SDS 12 OO5U [...reflecting Doctor Johnson's letter
041090 -        dated 100225, received on 100228, ref SDS 11 4Q54], and
041091 -        presented during examination the next day at Kaiser on 100302.
041092 -        ref SDS 13 FB90...]
041093 -
041094 -            [On 100606 1638 Millie thanks Doctor Johnson for submitting
041095 -            results of lab on 100529, showing less increase in cancer
041096 -            marker than exptected, even after 3 weeks without
041097 -            treatment, ref SDS 27 036C, and indicating there is still
041098 -            no internal involvement. ref SDS 27 PQ6V
041100 -         ..
041101 -   14.  Thanks very much for the complement on Tuesday saying in the
041102 -        meeting that "You look extremely well!" [reported on 100427
041103 -        0830. ref SDS 16 OJ6I
041105 -         ..
041106 -   15.  "Looking well" on Tuesday the day before chemotherapy on
041107 -        Wednesday aligns with metrics in your medical chart reporting
041108 -        ECOG performance score 0, indicating I am perfectly healthy
041109 -        with appropriate treatment, and reflecting the recent CT test
041110 -        finding no evidence of internal cancer [reported on 100301
041111 -        0005. ref SDS 12 ER95].  Your letter transmitting the CT report
041112 -        concluded our only problem to solve is cancer in my skin (the
041113 -        primary symptom of IBC - [also reported on 100301 0005.
041114 -        ref SDS 12 OO5U])
041116 -         ..
041117 -   16.  Targeted treatments which you prescribed beginning in 2007,
041118 -        like cetuximab, sunitinib, MPA, PARP, etc., do not degrade
041119 -        blood counts nor cause pain and suffering that occur with
041120 -        chemotherapy agents, like Taxol, AC, Gemzar, and the current
041121 -        treatment with Abraxane.  Targeted agents therefore save time
041122 -        and money and further reduce pain and suffering from Neupogen
041123 -        treatments which are needed with chemotherapy to maintain blood
041124 -        counts.
041126 -         ..
041127 -   17.  Targeted treatment for the 11th relapse will enable me to both
041128 -        "look well" and "feel well" 7-days a week, rather than the
041129 -        1-day you when you see me each month after the bye-week, when I
041130 -        have no chemotherapy, under the current protocol with Abraxane.
041131 -
041132 -            [On 100501 2017 Doctor Rugo reports plans to collaborate
041133 -            with Doctor Johnson at Kaiser on work plan for Millie to
041134 -            recover from 11th relapse of cancer caused by UCSF medical
041135 -            mistakes. ref SDS 18 HH4I
041137 -         ..
041138 -   18.  With Abraxane [...chemotherapy...], as previously reported, I
041139 -        am largely [...a zombie...] bed-ridden 4 - 6 days a week,
041140 -        drugged on morphine and Percocet to control pain from cancer,
041141 -        from chemotherapy, and from Neupogen.  That is why I missed
041142 -        taking Coumadin twice, causing INR to fall below the target
041143 -        range for treating pulmonary embolism.  By copy to Gloria, I am
041144 -        confirming her guidance not to change prescribed dosage, since
041145 -        I self-adjusted.  The test next Tuesday will assess
041146 -        requirements for further adjustments.
041148 -         ..
041149 -   19.  The only concern today is how soon to switch treatments and
041150 -        what protocol will be prescribed to align with Kaiser's
041151 -        strategy to use agents targeted to my patient profile? [...on
041152 -        100427, Doctor Johnson said PARP was the best "targeted"
041153 -        treatment for Millie, ref SDS 16 LO9O...]  My feeling is that
041154 -        the cancer marker rising to CA 15-3 424 and new IBC bumps with
041155 -        rising intensity appearing on the right side signal the 11th
041156 -        relapse.  If you feel we can complete the current cycle without
041157 -        risking losing control, I am prepared to continue with the next
041158 -        2 treatments of Abraxane.  My concern is that the 2-week trip
041159 -        planned for 100515 means another 2 weeks without treatment.
041161 -             ..
041162 -            [On 100501 2017 Doctor Rugo reports plans to collaborate
041163 -            with Doctor Johnson at Kaiser on work plan for Millie to
041164 -            recover from 11th relapse of cancer caused by UCSF medical
041165 -            mistakes. ref SDS 18 456L
041167 -             ..
041168 -            [On 100503 1522 Millie notifies medical team that time of
041169 -            the essence to get the next treatment going. ref SDS 19
041170 -            TD5W
041172 -             ..
041173 -            [On 100503 1945 Kaiser notifies Millie to get remaining 2
041174 -            treatments with Abraxane chemotherapy that seems to be
041175 -            failing, and then after 3 more weeks without treatment,
041176 -            following a trip abroad, the doctor will discuss "next
041177 -            steps." ref SDS 20 YL5N
041179 -             ..
041180 -            [On 100503 2338 Millie reports to medical team that she
041181 -            will implement the Kaiser's guidance to delay changing
041182 -            treatments, and takes Kaiser's letter on 010503, as
041183 -            assurance that recovery will be equal to changing treatment
041184 -            immediately on 100505. ref SDS 21 6X7S
041186 -             ..
041187 -            [On 100503 2338 Millie asks medical team why changing
041188 -            treatment is less urgent now to recover from cancer
041189 -            progressing faster for the 11th relapse, than when
041190 -            treatment was switched immediately for the 7th relapse on
041191 -            090202, and again for the 10th relapse on 100218.
041192 -            ref SDS 21 6X7V
041194 -             ..
041195 -            [On 100504 1609 Sara, Practice Manager for the UCSF
041196 -            Oncology Breast Care Clinic, called and notified Millie
041197 -            that Doctor Rugo will soon communicate with Doctor Johnson,
041198 -            or had already done so, to coordinate with Kaiser on
041199 -            planning Millie's next treatment to recover from the 11th
041200 -            relapse of cancer. ref SDS 22 NT5N
041202 -             ..
041203 -            [On 010505 0730 Millie received the 2nd treatment at
041204 -            Kaiser for the 3rd cycle of Abraxane chemotherapy, as
041205 -            ordered by Doctor Johnson. ref SDS 24 KE4K
041207 -             ..
041208 -            [On 100511 0900 cancer marker CA 15-3 520 increased another
041209 -            100 points, seemingly on an accelerating rise, which
041210 -            threatens to cascade out of control. ref SDS 25 L54I
041212 -             ..
041213 -            [On 100512 0730 Millie received 3rd treatment for 3rd cycle
041214 -            of Abraxane. ref SDS 26 KE4K
041216 -         ..
041217 -   20.  Some targeted treatments can be taken in pill form, e.g.,
041218 -        sunitinib, MPA.  Would it be possible to switch immediately so
041219 -        I can take pills to treat rising cancer during travel beginning
041220 -        on 100515?
041222 -         ..
041223 -   21.  Another strategy would be to do radiation and hyperthermia on
041224 -        the right side that was effective on the left side.  I do not
041225 -        want to get radiation treatment, but I didn't want to get
041226 -        Gemzar and Navelbine either.  I need advice from the medical
041227 -        team on the best course of care [... to treat 11th relapse
041228 -        cancer marker soars highest in patietn history CA 15-3 424, per
041229 -        above, ref SDS 0 U44U, and...] comparing trade-offs on
041230 -        effectiveness, side effects, and cost [... requested previously
041231 -        on 100329 2322. ref SDS 15 WA9U...].  Has Doctor Hsu been asked
041232 -        about his advice on 090423 that I can have more radiation on
041233 -        areas that have not been radiated, such as the right side?
041234 -        ref SDS 5 UG6L
041235 -
041236 -            [On 100503 2338 Millie asks medical team again for written
041237 -            explanation of work plan for review to compare trade-offs
041238 -            on treatment options, including ending treatment, in order
041239 -            to be prepared for discussions meeting with the doctor in 4
041240 -            weeks. ref SDS 21 6X9P
041242 -         ..
041243 -   22.  Naturally, this would require avoiding further lung damage, and
041244 -        so professional opinion should address risks and benefits.
041246 -         ..
041247 -   23.  Doctor Rugo reported in a letter to Kaiser on 090129 that
041248 -        hyperthermia with an appropriate drug agent has been effective
041249 -        recovering from cancer by getting more of the agent into the
041250 -        skin (see my letter to the medical team on 090130, citing
041251 -        Doctor Rugo's letter on 090129. ref SDS 1 HK3V
041253 -         ..
041254 -   24.  Since your examination found my only problem is cancer in the
041255 -        skin [... reported during meeting at Kaiser on 100302 0830.
041256 -        ref SDS 13 FB90, citing Doctor Johnson's letter on 100228,
041257 -        ref SDS 11 4Q54 ...] how would getting hyperthermia with a drug
041258 -        compare with getting only a drug?  Hyperthermia was easier to
041259 -        tolerate than radiation, so that might be a factor to consider
041260 -        prescribing treatment to recover from the 11th relapse.
041261 -
041268 -
041269 -
041270 -
041271 -
041272 -
041273 -
041274 -
041275 -
0413 -