Millie




Date: Tue, 25 Jul 2006 21:44:19 -0700

08 02 04 61 06072501




Ms. Margaret Rubino
New Patient Coordinator
Admissions
University of California San Francisco
Medical Center
Carol Franc Buck Breast Care Center
1600 Divisadero, Second Floor
San Francisco, CA 94115
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Subject:   2nd Opinion on Millie Relapse IBC Post Surgery

Dear Margaret,

Doctor Benz examined me at UCSF Medical Center on October 18, 2004, and prepared a 2nd opinion that helped me recover. Last year, you helped me get another round of 2nd opinions on surgery that further helped control my cancer. My letter to UCSF Medical Center on November 8, 2005 reported improvement in my condition, and thanked Doctor Benz for helpful advice.
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Now, disease has progressed, and I need a new treatment plan. Doctor Benz said that UCSF would be willing to do this. Please let me know the cost for this service to review the record and submit comments on questions presented along with additional guidance as deemed helpful.
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I need a 2nd opinion on options for treating secondary IBC that has relapsed for the 3rd time after 9 months NED, following left breast mastectomy surgery on October 21, 2005.
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I am currently being treated at Kaiser in Walnut Creek, CA, for left breast cancer, originally diagnosed in February, 2002, and treated with lumpectomy surgery on March 12, 2002. Two cycles of AC chemotherapy were not effective. Treatment was switched to Taxotere for 2 cycles, which yielded improvement. Radiation during July and August 2002, and then 4 more cycles of Taxotere completed initial treatment.
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IBC symptoms first appeared in PET scan test on December 18, 2002. Red rash was first reported on January 9, 2003. Symptoms gradually increased; however, there was no treatment during 2003.
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In 2004, I was treated for IBC with Avastin and Taxol from May until November, when pulmonary emboli ended this treatment. IBC subsided on the Avastin trial, but relapsed severely, until treatment was changed begining on April 15, 2005 to Taxotere and capecitabine, recommended by Doctor Benz at UCSF. There was strong recovery; inflammation fully subsided, image testing reported no swelled nodes, and CA 15-3 dropped from 107 down to 39, then bounced back to 45.
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On October 21, 2005 I had a left breast "simple" mastectomy. Biopsy reported finding no evidence of IBC disease in the removed tissue. DCIS was reported in the biopsy.
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Lymphedema occurred in January 2006. I am controlling this with home treatment.
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This year there have been two (2) PET scan tests, and one (1) contrast CT study, which all report no express findings of metastatic disease. CA 15-3 initially dropped to 28, following surgery, but has steadily climbed since January, and is now at 71.
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Disease at this time appears local by test criteria. PET scan test on April 14, 2006 found FDG SUV 2.6 right axilla and FDG SUV of 4.5 left supraclavicular. CT contrast study on May 5, 2006 did not find anything at these locations.
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Examination on April 28th, 2006 showed the left breast was still clear of disease. Slight rash was evident during examination on June 23rd, and by July 11th this formed an approximate 1" circular area concentrated left of the sternum at the right end of the mastectomy incision. There is a meandering line of low intensity inflammation extending about 2" - 3" from the circular area and about .5" above the incision line, and another about .5" below the surgical incision line. (see examination notes for meeting on July 11th)
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In a meeting on July 11, 2006, the primary care physician recommended a strategy of resuming prior treatment with cycles of Taxotere - 102 MG, and capecitabine (Xeloda) - 500 MG tablets taking 1.5 pills twice a day for 2 weeks, then 1 week off. At that time, other treatments were considered.
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Last Friday, on July 21 I had my first treatment for relapse, which was the 9th cycle of Taxotere and capecitabine (Xeloda), following the 8th cycle on September 16, 2005.
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Questions for 2nd opinion....
  1. What is the full range of drugs for treatment of IBC, including combinations?
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    For example, in a meeting on November 30, 2004 the primary care physician submitted a list of drugs. The list was not legible, but seemed to have 4 or 5 entries. Kaiser publishes a pamphlet that lists about 10 drugs, and some combinations. The doctor has stated there is a "declining pool" of treatment options. This conflicts with the record of a seemingly expanding list of drugs, and so presents a question of professional opinion as to what drugs are available?
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  2. What criteria determines the order prescribing drugs and the dosage of treatments, and timing switching to another treatment?
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    For example, on April 28, 2006 the primary care physician (PCP) proposed treating relapse with Navelbine.
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    Upon discussion, on July 11th, the decision was changed and treatment started with Taxotere and capecitabine, originally recommended by Doctor Benz in a 2nd opinion received from UCSF Medical Center on November 17, 2004. However, Doctor Benz, also, recommended trying Gemzar and capecitabine. Additionally, research shows IBC has been treated with Navelbine and capecitabine, and that patients who relapse and resume with drugs that were previously successful may suffer disease progression from mutated cancer cells.
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    Does IBC relapse represent microscopic mutated cells that avoided treatment with Taxotere and capecitabine in 2005, and therefore follow on treatment should be with different drugs, for example, Gemzar and Taxotere, or Navelbine and capecitabine, or something else? How can this be assessed in time to avoid a critical mass of cancer from forming that resists treatment?
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    What criteria drives changing treatments? Does rising or stable CA 15-3 signal the need to try another treatment?
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  3. Surgery - Kaiser elected to "postpone" breast reconstruction surgery on October 21, 2005, and instead used a conservative solution, recommended in Kaiser's letter dated September 28, 2005, and received from Kaiser on October 7, 2005.
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    Since the prior surgery was partially successful, can "postponed" surgery now be performed to remove a wider area of infected tissue, and perform breast reconstruction, as previously considered, toward reducing the need for continuous chemotherapy treatments?
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  4. Radiation - Kaiser's Tumor Board recommended additional radiation treatment to the left neck after surgery, in a report received from Kaiser on May 17, 2004.
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    When would such treatment be performed? Can breast reconstruction surgery expand Kaiser's original plan for radiation therapy?
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  5. Biopsy left breast mastectomy tissue - how can this show no evidence of disease, reported on October 27, 2005, when this tissue contained the greatest concentration of IBC, and now, 9 months later, adjacent tissue with no visible signs of IBC suddenly is an active site of disease? How thorough and dependable are biopsies? Does IBC present unique challenges for biopsy procedures?
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Patient history from inception in February 2002 through preparations for surgery in October 2005, is listed in the record on August 12, 2005.
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Patient history beginning with mastectomy surgery on October 21, 2005 to the present is listed in the record on July 22, 2006.
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Patient history for CA 15-3 cancer marker is listed in the record on July 11, 2006.
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Image test analyst reports are all also listed and accessible for review.
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Biopsy slides and test films are available as needed.
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Thanks very much for consideration.
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Sincerely,



Millie