Any Ladies from the San Francisco Bay Area?

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited December 2012

    Tlym -  I don't know if anyone is doing carboplatin in California.  It seems it takes a different kind of MO to "go off the reservation."  In my case, Dr. Chui in PDX was my first MO, because I had my surgeries in PDX (@ OHSU), but for chemo, it was more practical to do it close to home, so he worked with my MO in Southern Oregon (I actually live in California - former Bay Arean).  My MO in Medford formerly worked with OHSU, so maybe she would only do the carboplatin because of her relationship with Dr. Chui?  I don't know.  I know she consults with him on other cases.

    Have you tried Standford U?  I've seen brca stuff come out of there. And maybe UC Davis??  You might just start with who you would go to anyway and insist you get Carboplatin and see what they say.  Do you go to UCSF?  My brother had corresponded with a geneticist there, for me..Beth?...anyway, she never really did answer that question about carboplatin, but she is not an oncologist. 

    As far as your dreading. Really, it's not bad. I was telling a friend, the easiest part of BC were the surgeries.  I'm not saying it's not tough for awhile, but I think breast surgery is much easer than when they have to get into your core - no muscles involved.  They also give you lots of pain killers!  The ooph was easy peasy!!  I did my TE Exchange, chemo-port removal and ooph in the same operation last August.   I got a little fluid build up in my abdomen, but no perceptible pain.  Believe it or not, as usual, the chemo port bothered me the most, and just recovering from anesthesia after 5 months off chemo.  Tired.

    I'm going to send you a copy of a PM I received (via PM) about one woman's family and Carboplatin.  I feel lucky to have gotten carbo, especially after doing more research, after the fact.

    P.S. My doctors would not schedule the ooph at the same time as the BMX.  They said that was too much. I think that is true with most doctors. As easy as it was, I'm not sure why, but I had reconstruction (initial), BMX at the same time.  Maybe they didn't want a third surgeon in the room! In any case, my Ooph surgeon, a brca researcher, gyn, oncologist, said usually ovarian cancer does not occur for another 9 years, if BC comes first...to ease my worries about waiting.

    I'm going to look for that PM to send to you.

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  • chelseasanfran
    chelseasanfran Member Posts: 48
    edited January 2013

    Dear Tlym and Kam other dear women,

    I've been away from posting for a while, recovering from a total hip replacement, which I had about three months ago. My recovery is slower than I had hoped, but I'm finally getting out of the house and doing more. I still need a cane, and quite a bit of help with basic house chores and cooking. I miss hiking and dancing with a vengence, but I am confident that this time next year, I'll be out on the trails and the dance floor again.

    The most important positive news is that all my 1 year screening studies were negative - 13 mammograms, breast MRI and one f/u breast US, which I was able to get done in less than one week with limited problems with insurance coverage, etc. That in itself was a blessing after what I went through with my six month screening.

    Also, great news is that my hair is now long enough now to be trimmed into some kind of style (Last chemo was 3/2/12 and I still have what some ladies have termed chemo curls that outline a shape of a fairly large Afro) I also found a new hair coloring from UK - Tints of Nature - that comes in a semi-perm with no peroxide or ammonia and a permanent with very limited peroxide. I'm like the princess and the pea when it comes to hair coloring - can't tolerate much peroxide or chemicals. Anyway, they sell this product at Whole Foods and a bunch of sites online. I'm about to start with one of the semi-perm colors, which they claim will cover 80% of grey. This would probably be plenty enough for me (I'm gray and white pretty much all over with a strip of dark brown at my neck- so I will let you all know and will also try to get a few before and after photos posted.) My hair has grown back fairly slowly, but interestingly, it's much healthier and slightly thicker than it was for the several years prior to when I had chemo (and it all fell out).

    I'm also hoping to start fairly soon breast reconstruction, now one year plus out from a lumpectomy with Intraoperative Radiation (which was moderately disfiguring) with a local plastic surgeon who does a microsurgical free tissue transfer technique. This is a technique that I'm still learning about and would love to hear about from women who may have had this reconstructive procedure. I'm also interested in hearing if any women have had problems tolerating the Aromasin or have experienced any differences between the generic and brand versions (I'm taking the brand, b/c of all of my pre-exisitng bone and muscle problems).

    I will stay on Aromasin for another 4 plus years, if I can tolerate the SEs and can maintain adequate bone density. I know some women switch to Tamoxifen for part of the recommended five year course. 

    As I think some of you may know, I've followed pretty closely Keith Block's anti-cancer diet and have taken about 15 supplements daily that he prescribed for me since last April. I've lost about 30 pounds - which is great, but I also have a lot of work to do in building back up the significant muscle mass I've lost due to both the chemo and its side effects and my lack of aerobic exercise due to all of my BC tx (including the Aromasin) and separate issues with my left arthritic hip.  

    Kam and Tlym's recent postings on more advanced surgical procedures and chemotherapy regimens are beyond my scope of knowledge and experience, but I did a search on the NIH website for clinical trials in California involving Carboplatin and have listed them below with the link to the search site, which provides more information about them.

    Back to the Bay Area Babes (I hope no one is offended by the phrase) getting together, I am wondering if any of you gals might be interested in meeting on a weekend afternoon. I thought that the Claremont Hotel and Spa in Oakland might be a possibility.  I would be happy to reserve a room for a luncheon there, where there's also the additional opportunity for some extra pampering with a massage, pedicure or other spa treatment.

    Regardless of meeting up, I would love to hear updates from everyone and hope everyone's treatment and recovery are progressing well.

    Big hugs and love to you wonderful and inspiring women (both near and far away),

    Chelsea

    http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=11255624

    Cancer Type/Condition: Breast cancer, female State: California Country: U.S.A. Trial Type: Treatment Keywords/Phrases: Carboplatin Trial Status: Active

    1. Carboplatin and Paclitaxel Albumin-Stabilized Nanoparticle Formulation Before Surgery in Treating Patients With Locally Advanced or Inflammatory Triple Negative Breast Cancer

    Phase: Phase II Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 19 and over Sponsor: NCI, Other Protocol IDs: 11174, NCI-2012-00025, NCT01525966

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    City of Hope Comprehensive Cancer Center

    National Cancer Institute

    George Somlo Principal Investigator

    Trial Sites

    U.S.A.

    California

    Duarte

    City of Hope Comprehensive Cancer Center

    George Somlo, MD Ph: 800-826-4673
    Email: gsomlo@coh.org

    George Somlo Principal Investigator

    South Pasadena

    City of Hope Medical Group, Incorporated

    Stephen C. Koehler Ph: 626-396-2900
    Email: skoehler@coh.org

    Stephen C. Koehler Principal Investigator

    2. Veliparib With or Without Carboplatin in Treating Patients With Stage III or Stage IV Breast Cancer

    Phase: Phase II Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 18 and over Sponsor: NCI Protocol IDs: NCI-2011-01379, PHII-96, N01CM62209, CDR0000674384, CHNMC-PHII-96, 8264, NCT01149083

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    National Cancer Institute

    Jeffrey N. Weitzel Principal Investigator

    Trial Sites

    U.S.A.

    California

    Duarte

    City of Hope Comprehensive Cancer Center

    David R. Gandara Ph: 916-734-3771

    Jeffrey N. Weitzel Principal Investigator

    Los Angeles

    USC/Norris Comprehensive Cancer Center and Hospital

    Agustin A. Garcia Ph: 323-865-3900
    Email: garcia_a@ccnt.usc.edu

    Agustin A. Garcia Principal Investigator

    Sacramento

    University of California Davis Cancer Center

    David R. Gandara Ph: 916-734-3771
    Email: david.gandara@ucdmc.ucdavis.edu

    David R. Gandara Sub-Investigator

    3. Neoadjuvant Carboplatin, Weekly Abraxane and Trastuzumab in HER2+ Breast Cancer

    Phase: Phase II Type: Treatment Status: Active Age: 18 and over Sponsor: Other Protocol IDs: BrUOG-BR-211B, NCT00617942

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    Debora G. Isdale

    Yale Cancer Center

    William M. Sikov Principal Investigator

    debora isdale Ph: 401-863-3000
    Email: debora_isdale@brown.edu

    Trial Sites

    U.S.A.

    California

    Duarte

    City of Hope Comprehensive Cancer Center

    Kim Robinson Ph: 626-256-4673 Ext.64175
    Email: kimrobinson@coh.org

    George Solmo, MD Principal Investigator

    4. Phase II Breast Cancer Treatment Using Weekly Carboplatin+Nab-paclitaxel, Plus Trastuzumab (HER2+) or Bevacizumab (HER2-)

    Phase: Phase II Type: Treatment Status: Active Age: 21 to 90 Sponsor: Other Protocol IDs: UCI 07-61, HS#2007-6084, NCT00618657

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    Chao Family Comprehensive Cancer Center at University of California Irvine Medical Center

    Rita S. Mehta Principal Investigator

    Chao Family Comprehensive Cancer Center University of California, Irvine Medical Center Ph: 877-82-78839
    Email: UCstudy@uci.edu

    Trial Sites

    U.S.A.

    California

    Orange

    Chao Family Comprehensive Cancer Center at University of California Irvine Medical Center

    Contact Person Ph: 877-827-8839
    Email: UCstudy@uci.edu

    Rita S. Mehta Principal Investigator

    5. Phase I Study of Veliparib, Paclitaxel, and Carboplatin in Patients With Metastatic or Unresectable Solid Tumors and Hepatic or Renal Dysfunction

    Phase: Phase I Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 18 and over Sponsor: NCI Protocol IDs: UPCI-10-115, UPCI 10-115, 8808, NCT01366144

    Trial Contact Information

    Trial Lead Organizations

    UPMC Cancer Centers

    Hussein Tawbi, MD, PhD, Principal investigator Ph: 412-648-6466

    Trial Sites

    U.S.A.

    California

    Duarte

    City of Hope Comprehensive Cancer Center

    Clinical Trials Office - City of Hope Comprehensive Cancer Center Ph: 800-826-4673

    Email: becomingapatient@coh.org

    Los Angeles

    USC/Norris Comprehensive Cancer Center and Hospital

    Clinical Trials Office - USC/Norris Comprehensive Cancer Center and Hospital Ph: 323-865-0451

    Sacramento

    University of California Davis Cancer Center

    Clinical Trials Office - University of California Davis Cancer Center Ph: 916-734-3089

    South Pasadena

    City of Hope Medical Group, Incorporated

    Mark McNamara, MD Ph: 626-396-2900

    6. Docetaxel, Carboplatin, and Trastuzumab and/or Lapatinib in Treating Women With Stage I, Stage II, or Stage III Breast Cancer That Can Be Removed by Surgery

    Phase: Phase II Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 18 to 70 Sponsor: NCI, Other Protocol IDs: CDR0000616008, P30CA016042, TRIO-TORI-B-07, SANOFI-AVENTIS-TRIO-TORI-B-07, WIRB-20080822, NCT00769470

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    Translational Oncology Research International

    National Cancer Institute
    Jonsson Comprehensive Cancer Center at UCLA

    Sara Hurvitz Principal Investigator

    Trial Sites

    U.S.A.

    California

    Alhambra

    Central Hematology Oncology Medical Group, Incorporated - Alhambra

    Eddie H.L. Hu, MD Ph: 626-588-2825

    Bakersfield

    Comprehensive Blood and Cancer Center

    Clinical Trials Office - Comprehensive Blood and Cancer Center Ph: 661-862-7178

    Fullerton

    St. Jude Heritage Medical Group at Virginia K. Crosson Cancer Center

    Giribala Patel, MD Ph: 714-446-5900

    Northridge

    North Valley Hematology-Oncology Medical Group

    Sheldon J. Davidson, MD, FACP Ph: 818-773-6363
    Email: sheljdavid@aol.com

    Pomona

    Wilshire Oncology Medical Group, Incorporated - Pomona

    Linda D. Bosserman, MD, FACP Ph: 909-865-9960
    Email: linda.bosserman@womgi.com

    Santa Barbara

    Sansum - Santa Barbara Medical Foundation Clinic

    Clinical Trials Office - Sansum Medical Clinic Ph: 805-682-7300

    Santa Maria

    Central Coast Medical Oncology Corporation

    Robert A. Dichmann, MD Ph: 805-349-9393

    Solvang

    Santa Barbara Hematology Oncology - Solvang

    Frederic C. Kass, MD Ph: 805-686-5370

    Torrance

    Cancer Care Associates Medical Group, Incorporated - Redondo Beach

    David Chan, MD Ph: 310-530-9389

    7. Phase I Study of Vorinostat in Combination With Paclitaxel and Carboplatin in Patients With Metastatic or Recurrent Solid Tumors and HIV Infection

    Phase: Phase I Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 18 and over Sponsor: NCI Protocol IDs: AMC-078, AMC-078, NCT01249443

    Trial Contact Information

    Trial Lead Organizations

    AIDS Associated Malignancies Clinical Trials Consortium

    Missak Haigentz, MD, Principal investigator Ph: 718-920-7100
    Email: mhaigent@montefiore.org

    Trial Sites

    U.S.A.

    California

    Los Angeles

    UCLA Clinical AIDS Research and Education (CARE) Center

    Clinical Trials Office Ph: 310-557-9062

    Clinical Trials Office Ph: 310-557-9062

    8. The Study Evaluating Efficacy And Tolerability Of Veliparib in Combination With Temozolomide or In Combination With Carboplatin and Paclitaxel Versus Placebo in Subjects With BRCA1 and BRCA2 Mutation and Metastatic Breast Cancer.

    Phase: Phase II Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 18 and over Sponsor: Pharmaceutical / Industry Protocol IDs: M12-895, 2011-002913-12, NCT01506609

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    Abbott Laboratories

    Stacie P. Shepherd, M.D., PhD Study Director

    Terri L Leahy, BA Ph: (847) 935-3179
    Email: terri.leahy@abbott.com

    Trial Sites

    U.S.A.

    California

    La Jolla

    Site Reference ID/Investigator# 60754

    Site Reference ID/Investigator# 60754 Principal Investigator

    9. GDC-0980 in Combination With a Fluoropyrimidine, Oxaliplatin, and Bevacizumab in Patients With Advanced Solid Tumors

    Phase: Phase I Type: Biomarker/Laboratory analysis, Treatment Status: Active Age: 18 and over Sponsor: Pharmaceutical / Industry Protocol IDs: PIM4945g, GO00883, NCT01332604

    Trial Contact Information

    Trial Lead Organizations/Sponsors

    Genentech Incorporated

    Clinical Trials Study Director

    Please reference Study ID Number: PIM4945g www.roche.com/about_roche/roche_worldwide.htm Ph: 888-662-6728 (U.S. Only)
    Email: genentechclinicaltrials@druginfo.com

    Trial Sites

    U.S.A.

    California

    Santa Monica




     

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