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: March 1, 2010 00:05 AM Monday;
Rod Welch
Millie letter to medical team treatment plan 10th relapse.
1...Summary/Objective
2...Great Achievement Kaiser UCSF Stage V Cancer 10 Years 10th Relapse
..............
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CONTACTS
SUBJECTS
Default Null Subject Account for Blank Record
0403 -
0403 - ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 46 0000. ref SDS 45 0000.
040502 -
040503 -
040504 -
040505 -
040507 - ..
0406 -
0407 -
0408 - Background
0409 -
040901 - On 100203, Millie resumed treatment after a 3-week pause ordered by
040902 - Doctor Johnson, on 100112 0830, ref SDS 36 G68H, while Millie was
040903 - treated to recover from a very severe case of shingles infection,
040904 - reported earlier on 100104 1115. ref SDS 33 0P9S
040906 - ..
040907 - On 100217 0730 Millie got the 3rd treatment of the 3rd cycle with
040908 - Navelbine for Millie to recover from the 9th relaspe of cancer.
040910 - ..
040911 - On 100218 1000 Millie got Neupogen treatment at Kaiser to maintain
040912 - blood counts essential for getting Navelbine chemotherapy treatment
040913 - for cancer. ref SDS 46 ER95
040915 - ..
040916 - On 100218 1000 Millie had emergency meeting with Doctor Johnson,
040917 - primary care physician at Kaiser, after getting Neupogen treatment;
040918 - the doctor diagnosed relapse of shingles, and prescribed a 4th cycle
040919 - of treatment, but only with Acyclovir (Zovirax) 800 MG tablets,
040920 - ref SDS 46 0Y6O; the doctor also diagnosed Millie's 10 relapse of
040921 - cancer, and ordered switching treatment from Navelbine to Abraxane,
040922 - beginning on 100303. ref SDS 46 023N The doctor further ordered a CT
040923 - test to evaluate rising pain. ref SDS 46 ES40
040925 - ..
040926 - On 100218 1230 Millie had emergency CT test. ref SDS 46 PQ6R
040928 - ..
040929 - On 100301 0005 letter to medical team reports improvement from CT test
040930 - on 100218, and increased energy may indicate Navelbine can continue
040931 - another cycle. ref SDS 0 ER95
040932 -
040933 -
040935 - ..
0410 -
0411 -
0412 - Progress
0413 -
041301 - Millie's letter to medical team says...
041302 -
041303 - 1. Subject: Treatment Plan Cancer 10th Relapse Shingles 1st Relapse
041304 - Date: Mon, 01 Mar 2010 02:38:30 -0800
041317 - ..
041318 - 2. Great news - thanks for submitting the report [received
041319 - yesterday on 100228, ref SDS 48 AK5H], on the CT test performed
041320 - on 100218. ref SDS 46 PQ6R It is hard to imagine more positive
041321 - findings. I just love seeing "improvement", ref SDS 48 KL4P
041322 - and "no adenopathy." ref SDS 48 KL5X Seems like a miracle
041323 - compared to looking at my body, which shows extensive
041324 - progression of IBC, as you saw in our emergency meeting at
041325 - Kaiser on 100218, ref SDS 46 023N, and leading to the CT test
041326 - that same day, ref SDS 46 PQ6R [and which reported more good
041327 - news that the CT Department is formulating a protocol to use
041328 - Millie's Power Port rather than conventional IV needle
041329 - penetrations, and in order to prevent complications of cancer
041330 - and lymphedema, also reported on 100218 1000, ref SDS 46 M67K;
041331 - improvements in CT Department aligns with improvements in the
041332 - Emergency Room Department which upgraded to support Power Port
041333 - technology reported during care on 090919 0742. ref SDS 24
041334 - 04G4]
041335 -
041336 - [...see below citing Doctor Johnson saying the only
041337 - cancer problem to solve for Millie is in the skin.
041338 - ref SDS 0 OO5U
041340 - ..
041341 - [On 100302 0830 during meeting at Kaiser discussed
041342 - Doctor Johnson's analysis in his letter on 100301,
041343 - reporting resutls for the CT test today finding that the
041344 - only problem for the medical team to solve in Millie's
041345 - case in cancer in the skin. ref SDS 49 FB90
041347 - ..
041348 - 3. Several weeks ago, the right breast was fully covered with IBC
041349 - rash, an entirely new condition this year. IBC has wrapped
041350 - onto my left flank and farther onto my back. Lesions on my
041351 - left chest and left arm were beginning to bleed, similar to the
041352 - breastbone area which has been bleeding and oozing stuff since
041353 - last June, when Doctor Hsu reported a mistake at UCSF omitting
041354 - treatment of this area. Worsening cancer may signal failed
041355 - treatment with Navelbine. Now, however, except for the
041356 - breastbone area, these new bleeding lesions have dried up, and
041357 - the right breast seems less intense, at least to me, since
041358 - completing the 3rd cycle of treatment with Navelbine.
041359 -
041360 - [On 100302 0830 Doctor Johnson found during examination
041361 - at Kaiser expanding cancer, ref SDS 49 FB9Y, and so
041362 - ordered ending treatment with Navelbine and starting
041363 - treatment with Abraxane for Millie to recover from the
041364 - 10th relapse of cancer. ref SDS 49 FC34
041366 - ..
041367 - [On 100319 0843 cancer marker CA 15-3 360 dropped about
041368 - 60 points - aligns with evident reduction in IBC rash
041369 - that signals some recovery achieved with first 2
041370 - treatments using Abraxane. ref SDS 54 1T4R
041372 - ..
041373 - [On 100330 0830 examination at Kaiser by Doctor Johnson,
041374 - primary care physician, and starting 2nd cycle of
041375 - Abraxane chemotherapy, Millie shows response to 1st
041376 - cycle of treatment, ref SDS 55 FB9Y, including "drying
041377 - up" of IBC nodules. ref SDS 55 HR9K
041379 - ..
041380 - 4. Good news - today for the first time in 8 - 10 months I
041381 - ventured out for a hike. Did about 3 miles in an hour on flat
041382 - terrain near my daughter's home in Clayton. As reported
041383 - previously, breathing began improving about 2 months ago, and
041384 - now seems normal, though of course I am out of shape. Improved
041385 - breathing aligns with CT test findings of reduced ground glass
041386 - opacities. ref SDS 48 KL4P I know Doctor Hsu will be pleased
041387 - to hear this.
041389 - ..
041390 - 5. This morning, I am getting a blood draw at Kaiser in Martinez.
041391 - CBC/NEUTS are likely good, as they have been since starting
041392 - Navelbine last November. However, I want to assess the cancer
041393 - marker to complement findings in the CT test, and visual
041394 - inspection of IBC rash.
041396 - ..
041397 - 6. Accordingly, this morning please call and ask the outside lab
041398 - to expedite the report on CA 15-3. Normally, the lab needs 2 -
041399 - 3 days to post cancer marker results. If possible, I would
041400 - like results in time for our meeting at 0830 on Tuesday, and
041401 - NLT than 4pm on Tuesday afternoon, so we can assess trends
041402 - prior to starting the next cycle of chemotherapy on Wednesday
041403 - at 0730.
041405 - ..
041406 - 7. The test 2 weeks ago was CA 15-3 328, a jump of over 50 from
041407 - the prior report 2-weeks earlier. Rising over 100 in 4 weeks
041408 - reflects the 3-week pause you ordered in treating my cancer
041409 - while recovering from shingles diagnosed on 100104. As noted,
041410 - daily observations indicate IBC rash may have stabilized the
041411 - past few weeks, after resuming treatment for cancer. This
041412 - could be just a wishful "projection." If the cancer marker
041413 - drops or is stable, i.e., 328+/-, then I would consider
041414 - continuing Navelbine another cycle. If the marker increases
041415 - significantly above 328, to say 350 or higher, then I agree to
041416 - switching agents.
041417 -
041418 - [On 100302 0830 meeting with doctor discussed criteria for
041419 - changing treament for cancer based on results of blood test
041420 - for cancer marker CA 15-3 rising significantly above 328.
041421 - ref SDS 49 FB67
041423 - ..
041424 - [On 100303 0730 CA 15-3 428 for blood test today
041425 - demonstrates major increase in cancer marker that signals
041426 - progression that requires ending Navelbine, and starting
041427 - another drug for Millie to recover from 10th relapse.
041428 - ref SDS 50 EG9I
041430 - ..
041431 - 8. During the emergency meeting on 100218, you prescribed
041432 - Abraxane, presented in the Benz second opinion received on
041433 - 060929, and which is listed among the 20 or so alternative
041434 - treatments under review at UCSF and Kaiser submitted on 090326.
041435 - ref SDS 16 DW5S Notice that Benz recommended Abraxane with
041436 - lapatinib [reported on 060929 1643]. ref SDS 2 UI9K
041438 - ..
041439 - 9. Kaiser implemented the Benz recommendation for treating me with
041440 - cetuximab and carboplatin, and this was effective for nearly 2
041441 - years. What are the trade-offs for Abraxane alone as currently
041442 - proposed, and abraxane with lapatinib, as proposed by UCSF?
041443 -
041444 - [On 100303 0730 Millie's nurse, Anne, in the Kaiser
041445 - Oncology Chemotherapy Infusion Clinic said that Abraxane is
041446 - very expensive, because it is a new drug that extends
041447 - capabilities of Taxol, and is only prescribed for patients,
041448 - like Millie, who have received multiple treatments due to
041449 - cancer mutating. Millie's patient profile shows she is
041450 - getting treatment for her 10th relapse, reported in the
041451 - record on 090213 1140. ref SDS 14 AC6G
041453 - ..
041454 - 10. My concern is side effects.
041456 - ..
041457 - 11. I have tolerated Navelbine well. If the cancer has mutated to
041458 - make Navelbine no longer effective, then we must change
041459 - treatments [as proposed on 100218 1000. ref SDS 46 023N
041460 -
041461 - [On 100302 0830 Doctor Johnson advised that most patients
041462 - tolerate Abraxane better than Navelbine. ref SDS 49 FC46
041464 - ..
041465 - [On 100305 0810 Millie reports tolerating Abraxane well
041466 - 2-days after the 1st treatment. ref SDS 52 0V6X
041468 - ..
041469 - 12. The CT test was very encouraging for me finding no evidence of
041470 - adenopathy [...internally, per above, ref SDS 0 ER95...]. My
041471 - patient history shows that elevated cancer marker correlates to
041472 - LNs in the axilla and supraclavicular. Since none were found,
041473 - evidently Navelbine has been somewhat effective [...and so
041474 - supports analysis in Doctor Johnson's letter received on 100228
041475 - saying the problem to solve for Millie is
041476 - progression mainly in the skin, ref SDS 48 4Q54...].
041477 -
041478 - [On 100302 0830 during meeting at Kaiser discussed Doctor
041479 - Johnson's analysis in his letter on 100301, reporting
041480 - resutls for the CT test today finding that the only problem
041481 - for the medical team to solve in Millie's case in cancer in
041482 - the skin. ref SDS 49 FB90
041484 - ..
041485 - [On 100330 0830 since Millie showed some initial response
041486 - to treatment after the 1st cycle with Abraxane, Doctor
041487 - Johnson's comment in his letter on 100301, should still be
041488 - accurate that the only cancer problem to solve is in the
041489 - skin. ref SDS 55 FB90
041491 - ..
041492 - [On 100501 1037 Millie reviews patient history on Doctor
041493 - Johnson's report that testing shows the only problem to
041494 - solve for Millie is cancer in her skin, i.e., IBC.
041495 - ref SDS 56 U48V
041497 - ..
041498 - 13. If the cancer marker has stabilized, or even dropped again,
041499 - then effectiveness of this treatment combined with tolerable
041500 - side effects makes continuing Navelbine seem attractive,
041501 - subject to your comments on Tuesday.
041503 - ..
041504 - 14. Zan, the manager of the Oncology Pharmacy, called me last week
041505 - on 100219. ref SDS 47 ER95 He asked if I was ready to endure
041506 - what was ahead for getting Abraxane [... similar to Brad's call
041507 - on 090601, to verify Millie couldendure side effects of Gemzar
041508 - for treating 8th relapse of cancer. ref SDS 19 8J8L, and
041509 - including high risks for fatal infections due to low blood
041510 - counts, ref SDS 19 FR8L...], which you have prescribed to start
041511 - on Wednesday 100303, to replace Navelbine. He said that the
041512 - doctor normally explains side effects before a patient starts a
041513 - new treatment. I asked him to send me a letter so I can study
041514 - the scope of side effects.
041516 - ..
041517 - 15. Zan's letter dated 100219 1228 says...
041518 -
041519 - a. "Abraxane will be usually given over 30 minutes of infusion
041520 - once a week for 3 weeks followed by one week off."
041521 - ref SDS 47 LP3Q
041523 - ..
041524 - b. "Some of the common side effects are: Infections due to
041525 - low white blood cell count (neutropenia), hair loss,
041526 - Numbness, tingling, or burning of hands and feet (sensory
041527 - neuropathy), Fatigue and weakness (asthenia), Joint and
041528 - muscle pain, Mouth or lip sores (mucositis), Upset stomach
041529 - and diarrhea, Irritation at the injection site, and Low
041530 - blood pressure (hypotension). ref SDS 47 LP3U
041532 - ..
041533 - c. We also have you on Neupogen the day after each treatment.
041535 - ..
041536 - d. Plan is to start treatment on Wednesday March 3rd."
041538 - ..
041539 - 16. These severe side effects all sound scary, like getting AC and
041540 - Taxotere. Recall capacitibine was effective, but a
041541 - "near-death" experience, which I cannot tolerate again. Are
041542 - side effects of Abraxane tolerable like Navelbine? If so, we
041543 - may be okay.
041544 -
041545 - [On 100302 0830 Doctor Johnson advised that most patients
041546 - tolerate Abraxane better than Navelbine. ref SDS 49 FC46
041548 - ..
041549 - [On 100305 0810 Millie reports tolerating Abraxane well
041550 - 2-days after the 1st treatment. ref SDS 52 0V6X
041552 - ..
041553 - 17. These conventional chemotherapy agents are fine for stage I -
041554 - IV patients hoping for remission within a year or two of
041555 - treatment.
041557 - ..
041558 - 18. This however is not a good solution for "stage V" patients
041559 - suffering a 10th relapse in the 9th year of treatment. You and
041560 - Doctor Rugo have long said that my patient profile requires
041561 - treatment for cancer as a "chronic disease," [see case study on
041562 - 090325 0830. ref SDS 15 L15M], because after 10 relapses
041563 - remission is not achievable.
041565 - ..
041566 - 19. Therefore, quality of life is a critical criteria along with
041567 - effectiveness and cost. Weeks, even months of agony is viable
041568 - with hope for remission. When remission is impossible, then
041569 - months and years of agony is not a viable treatment for cancer
041570 - as a "chronic disease." I need another "cetuximab solution"
041571 - that is effective for years, with minimal side effects in order
041572 - to continue this effort.
041573 -
041574 - [On 100302 0830 Doctor Johnson advised that most patients
041575 - tolerate Abraxane better than Navelbine. ref SDS 49 FC46
041577 - ..
041578 - 20. That is why I have requested an explanation in writing from
041579 - Kaiser on trade-offs [see below, ref SDS 0 OO4S] with respect
041580 - to effectiveness, side effects, and cost on treatments targeted
041581 - to my patient profile. This is not a new request, and did not
041582 - initiate with me [as shown in case study on requesting analysis
041583 - of trade-offs, reported in the record on 090725 2017.
041584 - ref SDS 22 X66O]
041585 -
041586 - [On 100302 0830 Doctor Johnson advised that most patients
041587 - tolerate Abraxane better than Navelbine. ref SDS 49 FC46
041589 - ..
041590 - [On 100303 0730 Millie's nurse, Anne, in the Kaiser
041591 - Oncology Chemotherapy Infusion Clinic said that Abraxane is
041592 - very expensive, because it is a new drug that extends
041593 - capabilities of Taxol, and is only prescribed for patients,
041594 - like Millie, who have received multiple treatments due to
041595 - cancer mutating. Millie's patient profile shows she is
041596 - getting treatment for her 10th relapse, reported in the
041597 - record on 090213 1140. ref SDS 14 AC6G
041599 - ..
041600 - 21. On 080829, you asked me to tell UCSF to plan for my care, so
041601 - that the team would be ready to transition to new treatments in
041602 - time to be effective. ref SDS 5 PX5V [and confirmed in Millie's
041603 - letter to the medical team also on 080829 2256. ref SDS 6
041604 - RP9W]. You asked for this again on 081024, ref SDS 7 K67J [and
041605 - confirmed in a letter to the medical team, also, on 081024.
041606 - ref SDS 8 XZ8W], and again on 081219. ref SDS 9 KK3M [Millie's
041607 - letter to the medical team o 081223 cites results for meeting
041608 - at Kaiser on 081219, ref SDS 10 BV4T]. On 090121, Glenna called
041609 - and said that Doctor Rugo wanted me to submit a list of
041610 - treatments that have been presented in the record, because they
041611 - could not find their list. ref SDS 11 Y67L
041613 - ..
041614 - 22. I submitted the list on 090121, ref SDS 11 EV53, and again on
041615 - 090326, ref SDS 16 DW5S, implementing Kaiser's doctor/patient
041616 - partnership practice. Two days later on 090123, you called and
041617 - were pleased that UCSF had finally begun work on treating my
041618 - cancer as a "chronic disease." ref SDS 12 RK6O
041620 - ..
041621 - 23. Kaiser's evidence-based medical practice requires the doctor to
041622 - review the list of treatments and present trade-offs on
041623 - effectiveness, side effects and cost toward developing a plan
041624 - for treating cancer as a "chronic disease," as shown in the
041625 - letter to the team on 090725. ref SDS 22 T58U
041627 - ..
041628 - 24. I have been patient with the team on delays getting this work
041629 - done, because you explained on 090724 that analyzing trade-offs
041630 - for cancer treatments is "yeoman's work," which takes time [and
041631 - cited in Millie's letter to the team the next day on 090725
041632 - 2017. ref SDS 22 T58R]. On 090919 [actually on 090909] you
041633 - indicated that you finally had time to collaborate with Doctor
041634 - Rugo, ref SDS 23 QX88, to review treatments in the list she
041635 - requested on 090121. ref SDS 11 Y67L However, this has not
041636 - been done.
041637 -
041638 - [On 100304 2251 Millie asks the medical team again to
041639 - submit analysis of trade-offs for treatments "targeted" to
041640 - Millie's patient profile which do not injure the bone
041641 - marrow, and so reduce recurrence of shingles, and permit
041642 - concurrent treatment with cancer and shingles, in the event
041643 - that shingles does recur. ref SDS 51 OQ4Y
041645 - ..
041646 - [On 100305 0822 Millie asks medical team again to submit
041647 - analysis of trade-offs for treatments "targeted" to
041648 - Millie's patient profile that do not degrade bone marrow,
041649 - and so reduce risk of shingles recurrence, and in any event
041650 - can be given concurrently with treatment for shingles if
041651 - this disease does recur. ref SDS 52 0W3W
041653 - ..
041654 - [On 100319 0843 Millie's letter to medical team reports
041655 - initial recovery from 10th relapse after 2 treatments with
041656 - Abraxane gives time to complete review and compare
041657 - trade-offs for alternative oncology treatments in time for
041658 - Millie to recover from the 11th relapse by treating
041659 - Millie's cancer as a chronic disease. ref SDS 54 1T5V
041661 - ..
041662 - 25. Kaiser's medical chart for our meeting on 091112 says at the
041663 - bottom under Plan item #3...
041665 - ..
041666 - "I have discussed the potential risks (side effects and
041667 - complications) and benefits of the recommended and alternative
041668 - oncologic treatment(s). I have answered the patient's
041669 - questions. I believe the patient is competent and can
041670 - understand the recommendations that I have made. The patient
041671 - agrees with these recommendations."
041673 - ..
041674 - This part of Kaiser's medical chart does not meet requirements for
041675 - evidence-based medical practice, because...
041676 -
041677 - 1. There is no evidence of what treatments were analysed,
041678 - what risks, side effects, complications and benefits
041679 - were presented, and what was asked by the patient and
041680 - answered by the doctor.
041682 - ..
041683 - 2. There is no evidence comparing trade-offs for
041684 - alternative oncology treatments. Millie submitted a
041685 - letter on 090326 listing 10 or oncology treatments
041686 - identified in a 2nd opinion. About 10 or so other
041687 - alternatives were previously submitted to the team.
041688 - None of these were discussed on 091112, nor have they
041689 - ever been analysed by the medical team, despite
041690 - repeated requests, shown in the case study on 090725
041691 - 2017. ref SDS 22 X66O
041693 - ..
041694 - There was in fact no such discussion during the meeting on 091112.
041695 - This appears to be a construction prepared by an attorney or
041696 - management authority intended to show compliance with standard of care
041697 - where there has been none.
041699 - ..
041700 - [On 100309 1238 Millie notified medical team that
041701 - Kaiser's Knowledge Management system of internal
041702 - email could not be accessed for over a week, causing
041703 - delayed communication. ref SDS 53 HL4V
041705 - ..
041706 - Millie's letter to the medical team continues...
041707 -
041708 - 26. I have no record of this discussion on any of the 20 or so
041709 - treatments submitted, at your request, in a letter to the
041710 - medical team on 090326 (see para 10). ref SDS 16 DW5S
041712 - ..
041713 - 27. If you intended to submit trade-offs on alternative treatments,
041714 - I am letting you know today that this was not done, and that I
041715 - would like this work-product submitted in writing to avoid
041716 - confusion about what was said in meetings. We can then discuss
041717 - the written analysis of treatment trade-offs toward laying out
041718 - a treatment plan, as Doctor Rugo said was done on 090616 (see
041719 - below). ref SDS 0 PQXU
041721 - ..
041722 - 28. This issue is vital to my care, so later in the day on 090326,
041723 - I sent a follow up letter asking if you received the list of
041724 - treatments? ref SDS 17 QM3V You responded on 090326 saying
041725 - this would be discussed at the next meeting. ref SDS 18 T64N
041726 -
041727 - [On 100319 0843 Millie's letter to medical team reports
041728 - initial recovery from 10th relapse after 2 treatments with
041729 - Abraxane gives time to complete review and compare
041730 - trade-offs for alternative oncology treatments in time for
041731 - Millie to recover from the 11th relapse by treating
041732 - Millie's cancer as a chronic disease. ref SDS 54 1T5V
041734 - ..
041735 - 29. The next visit was on 090515. At that time, we got
041736 - side-tracked for a month sorting out the contract. In any
041737 - case, neither UCSF nor Kaiser have presented analysis of
041738 - alternative treatments and trade-offs.
041740 - ..
041741 - 30. On 090616, in a meeting at UCSF, Doctor Rugo said that
041742 - everybody at Kaiser and UCSF is "on board" for treating my
041743 - cancer as a chronic disease, and described having laid out a
041744 - plan for my future treatments [...with MPA and then PARP...].
041745 - ref SDS 21 D647
041747 - ..
041748 - 31. This sounded like the team had implemented your instructions on
041749 - 080829. The doctor further indicated having sent a letter to
041750 - you at Kaiser confirming this commitment. ref SDS 21 KD6L
041752 - ..
041753 - 32. As you might expect, I was elated.
041755 - ..
041756 - 33. I asked for a copy of the UCSF letter explaining the UCSF work
041757 - plan for my care to recover from medical mistakes getting
041758 - radiation treatment on referral from Kaiser. This has not been
041759 - received.
041761 - ..
041762 - 34. As you know, I have asked numerous times for communications
041763 - between Kaiser and UCSF on may care [e.g., see case study
041764 - requesting trade-offs comparing oncology treatments, reported
041765 - on 090725 2017. ref SDS 22 X66O], and have not received
041766 - anything except your original letter on 061230 prescribing
041767 - cetuximab at UCSF, and your recent letter [on 091211] dealing
041768 - only with PARP, and which does not present trade-offs. [and was
041769 - not received from Kaiser until, 100108 1618, due to delays
041770 - using Kaiser's "Securemail system." ref SDS 35 BW8I]
041772 - ..
041773 - 35. At this time, I am thrilled with favorable CT test results, and
041774 - possible improvement in IBC rash, subject to your review on
041775 - Tuesday, and further pending results of the cancer marker for
041776 - the blood draw later today. Continued strong blood counts and
041777 - recent improvement in energy and vitality after being a
041778 - "zombie" on [Percocet] oxycodone and treatment for shingles the
041779 - past several months are very good signs.
041781 - ..
041782 - 36. Thanks very much for seeing me on short notice in the Oncology
041783 - Department, and without a scheduled meeting on Thursday,
041784 - 100218. I was relieved when Arlette came into the Oncology
041785 - Chemotherapy Clinic, while I was getting Neupogen the day after
041786 - chemo, and said that Rod had requested immediate examination of
041787 - shingles recurrence, and progression of cancer, and that you
041788 - would see me for a few minutes right away. ref SDS 46 PP5Y
041790 - ..
041791 - 37. In our meeting at that time on 100218, you sprayed my forehead
041792 - with treatment for shingles, and prescribed another 10 day
041793 - treatment with Acyclovir (Zovirax) 800 MG tablets taken 5 times
041794 - a day for 10 days. ref SDS 46 0Y6O You did not prescribe
041795 - Prednisone, which was included in the original treatment plan
041796 - on 100104. ref SDS 33 QB5K
041798 - ..
041799 - 38. Based on slow response, since starting a fourth round of
041800 - Acyclovir medication on 100218, recovery from shingles
041801 - recurrence may require extending treatments again. Actually,
041802 - today, my forehead looks much better. So, who knows?? By copy
041803 - notifying Gloria, Case Manager, at the Kaiser Coagulation
041804 - Control Clinic in Martinez, to adjust Coumadin accordingly.
041806 - ..
041807 - 39. Good news - my head still hurts from shingles and the
041808 - medication, but not as badly. There were 3 - 4 weeks in
041809 - January and early February when I had difficulty controlling
041810 - pain even with 2 oxychodone pills taken 3 or 4 times a day. As
041811 - stated, I was a "zombie" in bed all day [see above, ref SDS 0
041812 - OP3T]. Since starting treatment again last Thursday pain in my
041813 - head has been better controlled taking Acyclovir with only 1
041814 - oxychodone.
041816 - ..
041817 - 40. I am worried, however, that shingles recurring presents
041818 - problems balancing treatments, based on your practice to
041819 - withhold treating cancer while recovering from shingles, shown
041820 - in the medical chart on 100112, and reported to the team on
041821 - 100120. ref SDS 37 HL3X
041823 - ..
041824 - 41. Would this be an advantage getting treatment with agents
041825 - "targeted" to the cancer profile, rather than [Abraxane, which
041826 - is] a general chemotherapy drug?
041827 -
041828 - [On 100302 0830 Doctor Johnson confirmed that Abraxane
041829 - chemotherapy lowers blood counts, that low blood counts
041830 - increase risk of shingles recurring, that if Millie suffers
041831 - shingles recurrence this will require pausing treatment for
041832 - cancer, and that "targeted" cancer treatments do not lower
041833 - blood counts, and so do not increase risk of shingles and
041834 - can be given concurrent with treating shingles in the event
041835 - of shingles recurrence. ref SDS 49 IC85
041837 - ..
041838 - [On 100304 2251 Millie asks the medical team again to
041839 - submit analysis of trade-offs for treatments "targeted" to
041840 - Millie's patient profile which do not injure the bone
041841 - marrow, and so reduce recurrence of shingles, and permit
041842 - concurrent treatment with cancer and shingles, in the event
041843 - that shingles does recur. ref SDS 51 OQ4Y
041845 - ..
041846 - [On 100305 0822 Millie asks medical team again to submit
041847 - analysis of trade-offs for treatments "targeted" to
041848 - Millie's patient profile that do not degrade bone marrow,
041849 - and so reduce risk of shingles recurrence, and in any event
041850 - can be given concurrently with treatment for shingles if
041851 - this disease does recur. ref SDS 52 0W3W
041853 - ..
041854 - 42. In a letter on 100205, I asked that Kaiser note in my medical
041855 - chart to continue blood draws using my Power Port rather than
041856 - needle penetrations in my right arm. ref SDS 43 IS6X
041857 -
041858 - [On 100309 1238 followed up, ref SDS 53 HL5R
041860 - ..
041861 - 43. On 100208, I received a letter from you that lists the subject
041862 - for the letter on 100205, but makes no reference to the date of
041863 - the letter nor any issue presented. Your letter used Kaiser's
041864 - Securemail, which I have not been able to open, reported for a
041865 - prior "securemail" on 100108, for another matter. ref SDS 34
041866 - MW4P
041867 -
041868 - [On 100302 0830 Doctor Johnson did not have time to submit
041869 - his letter to Millie dated 100205, ref SDS 49 FC61, which
041870 - was transmitted previously using Kaiser's "securemail" that
041871 - is not accessible, per explanation on 100302. ref SDS 0
041872 - OP4V
041874 - ..
041875 - [On 100309 1238 Millie's letter notifies the medical team
041876 - that Kaiser's letter submitted on 100208 has still not been
041877 - received. ref SDS 53 HL5R
041879 - ..
041880 - 44. You or Arlette later printed the letter on 100108, and it was
041881 - necessary to drive to Kaiser in Walnut Creek to get content.
041882 - The "securemail" turned out to present Doctor Rugo's work
041883 - prescribing my next treatment for the 10th relapse, which has
041884 - now occurred. ref SDS 35 FM5I
041886 - ..
041887 - 45. As with the prior matter, please submit content of your letter
041888 - on 100208. At this time, I have not seen that document.
041890 - ..
041891 - 46. Additionally, please advise what more needs to be done to
041892 - clarify for the medical team that blood draws in this case can
041893 - continue using my Power Port in order to avoid injury caused by
041894 - needle penetrations to the right arm.
041896 - ..
041897 - 47. During treatment at Kaiser on 100217, Barbara in the
041898 - Chemotherapy Infusion Clinic explained that doctor's orders in
041899 - Kaiser's computer system are not fast and easy to access,
041900 - because several steps must be performed clicking a "mouse" or
041901 - pressing buttons. If access to a location in the computer
041902 - system is needed infrequently, then knowledge (i.e., memory,
041903 - familiarity) wains on which buttons to push. This denies
041904 - access to critical patient history. Doctors, nurses and
041905 - administrators all have varying skill to manipulate the
041906 - computer system, with the result that implementing your
041907 - authorization for blood draws using my Power Port is irregular
041908 - at the Kaiser Walnut Creek office.
041910 - ..
041911 - 48. The same problems occurs applying Kaiser's computer system for
041912 - medication conflict control. A treatment is prescribed that
041913 - conflicts with Coumadin, but Gloria does not recognize the
041914 - problem to adjust the dose, because medication conflicts are
041915 - reported in a different part of Kaiser's Knowledge Management
041916 - system that requires several steps to access, and so are hard
041917 - to remember. Recall [on 060711] you had this problem getting
041918 - results of status change for the biopsy [2 years earlier] on
041919 - 040419. ref SDS 1 RK4L
041921 - ..
041922 - 49. This same problem occurs with Kaiser's confidential email. I
041923 - need regular email for the same reason people at Kaiser need
041924 - fast and easy access to my records in order to provide the
041925 - correct care on time [explained in the record on 090205,
041926 - ref SDS 13 HY4I]. Securemail protects patient confidentiality.
041927 - This is a patient benefit which I am entitled to defer in order
041928 - to get the larger benefit of good care by getting timely,
041929 - accurate information.
041930 -
041931 - [On 100302 0830 Doctor Johnson did not submit his letter to
041932 - Millie dated 100205, ref SDS 49 FC61, which was transmitted
041933 - previously using Kaiser's "securemail" that is not
041934 - accessible, per explanation on 100302. ref SDS 0 OP4V
041936 - ..
041937 - [On 100309 1238 Millie's letter notifies the medical team
041938 - that Kaiser's letter submitted on 100208 has still not been
041939 - received. ref SDS 53 HL5R
041941 - ..
041942 - [On 100309 1238 notifies medical team that public domain
041943 - email addresses for doctors at Kaiser are required to
041944 - efficiently direct the work performing Millie's health
041945 - care, and Millie asks if Kaiser needs a signed document
041946 - authorizing public domain email for confidential "secure"
041947 - communications. ref SDS 53 HL6R
041949 - ..
041950 - 50. In the case of medication conflicts, we have to scramble to
041951 - reduce my INR from high risk levels. In the case of blood
041952 - draws, physical and emotional pain and suffering overwhelm me
041953 - and the unlucky person assigned to find a find a vein using
041954 - conventional IV needle penetration at Kaiser's Walnut Creek
041955 - office. Recall the Power Port was implanted by your order to
041956 - solve this precise problem, reported on 080425. ref SDS 3 FP6F
041958 - ..
041959 - 51. I usually get blood draws at the Kaiser Infusion Clinic in
041960 - Martinez, which uses my Power Port. As noted, the clinic in
041961 - Walnut Creek has difficulty accessing your authorization.
041962 - Accordingly, please print a letter to Paula, Cisi, Bella, et
041963 - al, to facilitate coordination on this issue in the Oncology
041964 - Chemotherapy Clinic, and provide me a copy, so that, when I
041965 - need a blood draw in the Walnut Creek office, which occurs from
041966 - time to time, your instructions are fast and easy to access.
041967 -
041968 - [On 100302 0830 during meeting at Kaiser to approve
041969 - starting treatment to recover from 10th relapse of cancer,
041970 - the doctor did not have time to submit a copy of
041971 - authorization for Millie to get blood draws using her Power
041972 - Port at the Oncology Chemotherapy Infusion Clinic in Walnut
041973 - Creek, as performed routinely at Kaiser's Clinic in
041974 - Martinez. ref SDS 49 7M6H
041976 - ..
041977 - 52. So, this morning I am getting the blood draw in Martinez, which
041978 - does not present problems using the Power Port.
041980 - ..
041981 - 53. Again, I am pleased to commend the medical team for taking up a
041982 - complex case with diligence, care, and expertise. Complexity
041983 - compounds as a function of project duration, eventually
041984 - overwhelming everyone, unless energy is invested to manage the
041985 - "power of knowledge" from connecting [the dots of] cause and
041986 - effect that control the future. ref OF 1 I38N
041987 -
041988 -
0420 -
SUBJECTS
Default Null Subject Account for Blank Record
0503 -
050401 - ..
050402 - Great Achievement Kaiser UCSF Stage V Cancer 10 Years 10th Relapse
050403 -
050404 -
050405 - 54. Having reached my 9th year of treatment, I am prepared to be a
050406 - good partner toward reaching 10 years of continuous treatment.
050407 - As you noted on 090213, saying I had less than a year to live,
050408 - ref SDS 14 9L7N, extending my life another 2 years with some
050409 - semblance of "quality," would be a great achievement for Kaiser
050410 - and UCSF, and yield lessons learned to improve patient outcomes
050411 - for a great many others, who require treatment of cancer as a
050412 - "chronic disease." At the beginning of last year, I was asked
050413 - to provide a list of treatments. This was done [per above,
050414 - ref SDS 0 OO8P]. At this time, medical analysis of trade-offs
050415 - is needed, as called out for standard of care providing
050416 - evidence-based medical practice. If there is something more I
050417 - can do to assist the team, please let me know.
050419 - ..
050420 - 55. Look forward to our meeting tomorrow morning.
050421 -
050427 -
050428 -
050429 -
050430 -
050431 -
050432 -
050433 -
050434 -
050435 -
050436 -
0505 -