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: July 27, 2006 07:18 AM Thursday;
Rod Welch
Millie requests 2nd opinion from Stanford Med Center treat IBC relapse
1...Summary/Objective
..............
Click here to comment!
CONTACTS
0201 - Stanford Medical Center O-00000837 0609
020104 - Stanford Referral Center and Liason Services O-00000837 0609
0202 - Stanford Medical Center O-00000837 0604
020201 - Ms. Carol Walovich, RN; Manager
020203 - Stanford Referral Center and Liason Services O-00000837 0604
SUBJECTS
2nd Opinion #3 Stanford Medical Center Letter Requests List Chemothe
0603 -
0603 - ..
0604 - Summary/Objective
0605 -
060501 - Follow up ref SDS 37 0000. ref SDS 35 0000.
060502 -
060503 - Submitted request to Stanford Medical Center for 2nd opinion.
060504 -
060505 -
060506 -
060507 -
060509 - ..
0606 -
0607 -
0608 - Background
0609 -
060901 - Planning for support opinion was developed on 060721, ref SDS 35 IS6F,
060902 - based on background reviewed at that time. ref SDS 35 YK6N
060904 - ..
060905 - 2nd opinion was requested from UCSF on 060725. ref SDS 37 ST9O
060907 - ..
060908 - Patient history communicating with Stanford Medical Center on
060909 - arranging 2nd opinions has email addresses, reported on 041002,
060910 - ref SDS 3 YR5I, and later in letters to particular staff at Stanford
060911 - on 041008, ref SDS 6 0001, including Carol Walovich, ref DIP 1 0001,
060912 - and followed up on with the Medical Center requesting medical records,
060913 - telecon on 041011. ref SDS 7 U186
060915 - ..
060916 - Today, Millie submitted ref DIT 1 0001 to Michelle at Stanford Medical
060917 - Center who assisted in getting 2nd opinions previously on 041008,
060918 - ref SDS 6 0001, and with a copy to Carol Walovich, who gave assistance
060919 - a few days earlier on 041006. ref SDS 4 0001
060921 - ..
060922 - Millie says in her letter...
060923 -
060924 - 1. Doctor Guardino examined me at Stanford Medical Center on
060925 - October 19, 2004, and prepared a 2nd opinion that helped me
060926 - recover. My letter to Stanford Medical Center on November 8,
060927 - 2005 thanked the Doctor for helpful advice. ref DIT 1 0001
060929 - ..
060930 - 2. Now, disease has progressed, and I need a new treatment plan.
060931 - Doctor Guardino indicated that Stanford Medical Center would be
060932 - willing to follow up with further advice. Please let me know
060933 - the cost for this service to review the record and submit
060934 - comments on questions presented (see below) along with
060935 - additional guidance as deemed helpful. ref DIT 1 JR6L
060937 - ..
060938 - 3. I need a 2nd opinion on options for treating secondary IBC that
060939 - has relapsed for the 3rd time after 9 months NED, following
060940 - left breast mastectomy surgery on October 21, 2005. ref DIT 1
060941 - TR7I
060943 - ..
060944 - 4. I am currently being treated at Kaiser in Walnut Creek, CA, for
060945 - left breast cancer, originally diagnosed in February, 2002, and
060946 - treated with lumpectomy surgery on March 12, 2002. Two cycles
060947 - of AC chemotherapy were not effective. Treatment was switched
060948 - to Taxotere for 2 cycles, which yielded improvement. Radiation
060949 - during July and August 2002, and then 4 more cycles of Taxotere
060950 - completed initial treatment. ref DIT 1 6S7N
060952 - ..
060953 - 5. IBC symptoms first appeared in PET scan test on December 18,
060954 - 2002. Red rash was reported on January 9, 2003. Symptoms
060955 - gradually increased; however, there was no treatment during
060956 - 2003. ref DIT 1 IS8L
060958 - ..
060959 - 6. In 2004, I was treated for IBC with Avastin and Taxol from May
060960 - until November, when pulmonary emboli ended treatment. IBC
060961 - subsided on the Avastin trial, but relapsed severely, until
060962 - treatment was changed beginning on April 15, 2005 to Taxotere
060963 - and capecitabine. There was strong recovery; inflammation
060964 - fully subsided, image testing reported no swelled nodes, and CA
060965 - 15-3 dropped from 107 down to 39, then bounced back to 45.
060966 - ref DIT 1 6T9G
060968 - ..
060969 - 7. On October 21, 2005 I had a left breast "simple" mastectomy, as
060970 - discussed in Doctor Guardino's opinion letter received December
060971 - 9, 2004. Biopsy reported finding no evidence of IBC disease in
060972 - the removed tissue. DCIS was reported in the biopsy.
060973 - ref DIT 1 CT9O
060975 - ..
060976 - 8. Lymphedema occurred in January 2006. I am controlling this
060977 - with home treatment. ref DIT 1 QT4K
060979 - ..
060980 - 9. This year two (2) PET scan tests, and one (1) contrast CT study
060981 - report no express findings of metastatic disease. CA 15-3
060982 - initially dropped to 28, following surgery, but has steadily
060983 - climbed since January, and is now at 71. ref DIT 1 GU4O
060985 - ..
060986 - 10. Disease at this time appears local by test criteria. PET scan
060987 - test on April 14, 2006 found FDG SUV 2.6 right axilla and FDG
060988 - SUV of 4.5 left supraclavicular. CT contrast study on May 5,
060989 - 2006 did not find lymphadenophy of any kind. ref DIT 1 NU5K
060991 - ..
060992 - 11. Examination on April 28th, 2006 showed the left breast was
060993 - still clear of disease. Slight rash was evident during
060994 - examination on June 23rd, and by July 11th this formed an
060995 - approximate 1" circular area concentrated left of the sternum
060996 - at the right end of the mastectomy incision. ref DIT 1 OU6G
060997 - There is a meandering line of low intensity inflammation
060998 - extending about 2" - 3" from the circular area and about .5"
060999 - above the incision line, and another about .5" below the
061000 - surgical incision line. (see examination notes for meeting on
061001 - July 11th), ref SDS 33 8Z8G
061003 - ..
061004 - 12. In a meeting on July 11, 2006, the primary care physician
061005 - recommended a strategy of resuming prior treatment with cycles
061006 - of Taxotere - 102 MG, and capecitabine (Xeloda) - 500 MG
061007 - tablets taking 1.5 pills twice a day for 2 weeks, then 1 week
061008 - off. At that time, other treatments were considered.
061009 - ref DIT 1 FW3I
061011 - ..
061012 - 13. Last Friday, on July 21 I had my first treatment for relapse,
061013 - which was the 9th cycle of Taxotere and capecitabine (Xeloda),
061014 - following the 8th cycle on September 16, 2005. ref DIT 1 YW3O
061016 - ..
061017 - 14. Questions for 2nd opinion....
061019 - ..
061020 - 1. What is the full range of drugs for treatment of IBC,
061021 - including combinations? ref DIT 1 NX4J
061023 - ..
061024 - For example, in a meeting on November 30, 2004 the primary
061025 - care physician submitted a list of drugs. The list was not
061026 - legible, but seemed to have 4 or 5 entries. Kaiser
061027 - publishes a pamphlet that lists about 10 drugs, and some
061028 - combinations. The doctor has stated there is a "declining
061029 - pool" of treatment options. This conflicts with the record
061030 - of a seemingly expanding list of drugs, and so presents a
061031 - question of professional opinion as to what drugs are
061032 - available? ref DIT 1 LX5F
061034 - ..
061035 - 2. What criteria determines the order prescribing drugs and
061036 - the dosage of treatments, and timing switching to another
061037 - treatment? ref DIT 1 LN5O
061039 - ..
061040 - For example, on April 28, 2006 the primary care physician
061041 - (PCP) proposed treating relapse with Navelbine. ref DIT 1
061042 - YO6H .......... ref SDS 32 9H5I
061044 - ..
061045 - Upon discussion, on July 11th, the decision was changed and
061046 - treatment started with Taxotere and capecitabine,
061047 - originally recommended by Doctor Benz in a 2nd opinion
061048 - received from UCSF Medical Center on November 17, 2004.
061049 - However, Doctor Benz, also, recommended trying Gemzar and
061050 - capecitabine. Additionally, research shows IBC has been
061051 - treated with Navelbine and capecitabine, and that patients
061052 - who relapse and resume with drugs that were previously
061053 - successful may suffer disease progression from mutated
061054 - cancer cells. ref DIT 1 PO6N
061056 - ..
061057 - Does IBC relapse represent microscopic mutated cells that
061058 - avoided treatment with Taxotere and capecitabine in 2005,
061059 - and therefore follow on treatment should be with different
061060 - drugs, for example, Gemzar and Taxotere, or Navelbine and
061061 - capecitabine, or something else? How can this be assessed
061062 - in time to avoid a critical mass of cancer from forming
061063 - that resists treatment? ref DIT 1 YP7N
061065 - ..
061066 - What criteria drives changing treatments? Does rising or
061067 - stable CA 15-3 signal the need to try another treatment?
061068 - ref DIT 1 LP8K
061070 - ..
061071 - 3. Surgery - Kaiser elected to "postpone" breast
061072 - reconstruction surgery on October 21, 2005, and instead
061073 - used a conservative solution, recommended in Kaiser's
061074 - letter dated September 28, 2005, and received from Kaiser
061075 - on October 7, 2005. ref DIT 1 3Q8O .... ref SDS 30 KO58
061077 - ..
061078 - Since the prior surgery was partially successful, can
061079 - "postponed" surgery now be performed to remove a wider area
061080 - of infected tissue, and perform breast reconstruction, as
061081 - previously considered, toward reducing the need for
061082 - continuous chemotherapy treatments? ref DIT 1 HQ9L .....
061083 - ref SDS 29 QS65
061085 - ..
061086 - 4. Radiation - Kaiser's Tumor Board recommended additional
061087 - radiation treatment to the left neck after surgery, in a
061088 - report received from Kaiser on May 17, 2004. ref DIT 1 EQ4J
061089 - .... ref SDS 1 F77M
061091 - ..
061092 - When would such treatment be performed? Can breast
061093 - reconstruction surgery expand Kaiser's original plan for
061094 - radiation therapy? ref DIT 1 WQ5F
061096 - ..
061097 - 5. Biopsy left breast mastectomy tissue - how can this show no
061098 - evidence of disease, reported on October 27, 2005, when
061099 - this tissue contained the greatest concentration of IBC,
061100 - and now, 9 months later, adjacent tissue with no visible
061101 - signs of IBC suddenly is an active site of disease? How
061102 - thorough and dependable are biopsies? Does IBC present
061103 - unique challenges for biopsy procedures? ref DIT 1 5N4O
061105 - ..
061106 - 15. Patient history from inception in February 2002 through
061107 - preparations for surgery in October 2005, is listed in the
061108 - record on August 12, 2005. ref DIT 1 PQXV ..... ref SDS 23 UF4J
061110 - ..
061111 - 16. Patient history beginning with mastectomy surgery on October
061112 - 21, 2005 to the present is listed in the record on July 22,
061113 - 2006. ref DIT 1 JR6M ...... ref SDS 36 XQ7H
061115 - ..
061116 - 17. Patient history for CA 15-3 cancer marker is listed in the
061117 - record on July 11, 2006. ref DIT 1 TS3I ..... ref SDS 33 087J
061119 - ..
061120 - 18. Image test analyst reports are all also listed and accessible
061121 - for review. ref DIT 1 NS3O .... ref SDS 33 FE8F
061123 - ..
061124 - 19. Biopsy slides and test films are available as needed.
061125 - ref DIT 1 0T4J
061127 - ..
061128 - 20. I am asking for review by Doctor Guardino, based on her helpful
061129 - 2nd opinion in 2004. If her schedule is full, another doctor
061130 - should be able to address the issues presented. I am sending a
061131 - copy to Carol Walovich, because she is listed in the record as
061132 - supporting administration for the prior 2nd opinion.
061133 - ref DIT 1 8T4M
061135 - ..
061136 - 21. Thanks very much for consideration. ref DIT 1 FT5J
061137 -
061138 -
061140 - ..
0612 -
0613 -
0614 - 1343
0615 -
061501 - Received ref DRT 1 0001 from Dorothy at Stanford Medical Center
061502 - responding to Millie's letter, ref DIT 1 0001, submitted earlier
061503 - today, per above. ref SDS 0 ST9O
061505 - ..
061506 - Dorothy says...
061507 -
061508 - 1. The Cancer Referral Service at Stanford is pleased to provide
061509 - information to physicians and consumers who wish to access
061510 - medical services at either Stanford Hospital & Clinics or
061511 - Lucile Salter Packard Children's Hospital.
061513 - ..
061514 - 2. Thank you for your inquiry. If you will contact our toll free
061515 - number 1 877 668-7535 Monday - Friday between the hours of
061516 - 8:00am and 5:00pm we will put you in contact with a new patient
061517 - coordinator. She will then assist you in setting an
061518 - appointment with the appropriate physician and answer any
061519 - questions you might have.
061520 -
061522 - ..
0616 -
0617 -
0618 - 1350
0619 -
061901 - Called Dorothy at Stanford................ 877 668-7535
061902 -
061903 - Dorothy will forward Millie's letter, ref DIT 1 0001, to Rachelle, who
061904 - works with Doctor Guardino for initial review.
061906 - ..
061907 - Rachelle will coordinate with the doctor, and call later today or
061908 - tomorrow and advise whether Doctor Guardino is able and willing to
061909 - support 2nd opinion review in this case.
061910 -
061911 - Actually, Carol's letter and the call to Denise indicates that
061912 - Rochelle has Millie's letter. ref SDS 0 Z23H
061913 -
061914 -
061916 - ..
0620 -
0621 -
0622 - 1417
0623 -
062301 - Received ref DRT 2 0002 from Carol also responding to Millie's letter,
062302 - ref DIT 1 0001, submitted per above. ref SDS 0 ST9O
062304 - ..
062305 - Carol says...
062306 -
062307 - 1. Thank you for your email. (As an aside, Michelle Malig no
062308 - longer works here.) The out of pocket cost of a second opinion
062309 - for the consultation alone is roughly $650.00. This would
062310 - require you to come to Stanford since it is much safer in
062311 - establishing a plan of care to have you present for the
062312 - consult. I have cc'd your email to Rochelle Wallach who can
062313 - coordinate your schedule with Dr. Guardino's. In case you
062314 - would like to call her directly, her phone number is (650)
062315 - 725-7330.
062317 - ..
062318 - 2. Thanks again for your interest in Stanford Hospital and
062319 - Clinics.
062320 -
062321 -
062323 - ..
0624 -
0625 -
0626 - 1440
0627 -
062701 - Called Rochelle and talked to Denise............. 650 725 7330
062702 -
062703 - Not sure if this the Denise who assisted Doctor Guardino, along with
062704 - Todd, when the doctor visited with Millie at Stanford on 041019.
062705 - ref SDS 10 QR3N
062707 - ..
062708 - Denise said that Rochelle is talking to another patient. She found
062709 - Millie's identification in Stanford's records.
062711 - ..
062712 - She will ask Rochelle to call back later today.
062713 -
062714 - [On 060731 Rochelle called and left a message. ref SDS 38 T04O
062715 -
062716 -
062717 -
062718 -
062719 -
062720 -
062721 -
0628 -
Distribution. . . . See "CONTACTS"