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Getting us all on the same page....

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  • curlyq1971
    curlyq1971 CSN Member Posts: 56
    #42
    lillin20 said:

    my grandma
    When were you diagnosed? Nov 2005
    What stage? IIIc

    Are you the patient, or a caregiver: Granddaughter
    OVCA, clear cell, or PPC? PPC

    What was your highest CA125? 689
    What was your lowest? 23
    What is it now? we don't know, we're not testing anymore

    What's your current status? my grandma has completed tax/carbo, carbo for the relapse, doxil for second relapse, and is now on hospice care

    My Information
    When were you diagnosed? August 26, 2005
    What stage? 2C

    Are you the patient, or a caregiver: Patient
    OVCA, clear cell, or PPC? OVCA

    What was your highest CA125? 50,500
    What was your lowest? Not sure
    What is it now? 22

    What's your current status? Cancer Free, CA125 and CT Scan to confirm.
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  • Unknown
    Unknown
    #43
    This comment has been removed by the Moderator
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  • LPack
    LPack CSN Member Posts: 645
    #44
    Great for newbies
    When were you diagnosed? (January 2008)
    What stage? (IIIc)

    Are you the patient, or a caregiver: (patient)
    OVCA, clear cell, or PPC? (OVCA)

    What was your highest CA125? (1799)
    What was your lowest? (6) I think, I'd have to look it up been awhile!
    What is it now? (151)

    What's your current status? I am in recurrence. Was on cisp/gem from July 2009-February 2010 (became allergic to cisp) changed to gem/carbo from March 2010-May 2010. Went to The James Cancer Center began PARP Clinical Trial (drew the Doxil and on a higher dose) on July 19 and continuing...................................

    Living for Jesus and Counting my Blessings,
    Libby


    I am BRCA2 positive
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  • KarynH
    KarynH CSN Member Posts: 32
    #45
    unknown said:

    This comment has been removed by the Moderator

    When were you diagnosed?
    When were you diagnosed? August 2009
    What stage? 4

    Are you the patient, or a caregiver: daughter/caregiver
    OVCA, clear cell, or PPC? OVCA

    What was your highest CA125? 993
    What was your lowest? 36
    What is it now? 44

    What's your current status? No surgery.(Sept.- March --Carbo/Taxol) (March - Oct.--Taxol/Carbo/Avastin)
    Currently staying on Avastin alone along with daily cytoxan. Two small spots still remain on CT, but is a great improvement over a year ago.
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  • sanam
    sanam CSN Member Posts: 106
    #46
    KarynH said:

    When were you diagnosed?
    When were you diagnosed? August 2009
    What stage? 4

    Are you the patient, or a caregiver: daughter/caregiver
    OVCA, clear cell, or PPC? OVCA

    What was your highest CA125? 993
    What was your lowest? 36
    What is it now? 44

    What's your current status? No surgery.(Sept.- March --Carbo/Taxol) (March - Oct.--Taxol/Carbo/Avastin)
    Currently staying on Avastin alone along with daily cytoxan. Two small spots still remain on CT, but is a great improvement over a year ago.

    My Mom
    When were my mom was diagnosed? Dec 2009
    What stage? 3c

    Are you the patient, or a caregiver: daughter/caregiver
    OVCA, undiffrenciated

    What was her highest CA125? 1199
    What was your lowest? 13
    What is it now? 13

    What's your current status?
    She had 6 rounds of carbo/taxol finished in March 2010 then debulking surgery in May 2010 and then 12 sessions(6 rounds )campto/gemzar finished on October 28th and scan came back clear after 4 rounds and the next scan is on December 22nd.
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  • Hissy_Fitz
    Hissy_Fitz CSN Member Posts: 1,834 Member
    #47
    sanam said:

    My Mom
    When were my mom was diagnosed? Dec 2009
    What stage? 3c

    Are you the patient, or a caregiver: daughter/caregiver
    OVCA, undiffrenciated

    What was her highest CA125? 1199
    What was your lowest? 13
    What is it now? 13

    What's your current status?
    She had 6 rounds of carbo/taxol finished in March 2010 then debulking surgery in May 2010 and then 12 sessions(6 rounds )campto/gemzar finished on October 28th and scan came back clear after 4 rounds and the next scan is on December 22nd.

    Bumping this up for the
    Bumping this up for the newbies
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  • Nat671
    Nat671 CSN Member Posts: 9
    #48
    KarynH said:

    When were you diagnosed?
    When were you diagnosed? August 2009
    What stage? 4

    Are you the patient, or a caregiver: daughter/caregiver
    OVCA, clear cell, or PPC? OVCA

    What was your highest CA125? 993
    What was your lowest? 36
    What is it now? 44

    What's your current status? No surgery.(Sept.- March --Carbo/Taxol) (March - Oct.--Taxol/Carbo/Avastin)
    Currently staying on Avastin alone along with daily cytoxan. Two small spots still remain on CT, but is a great improvement over a year ago.

    new
    When were you
    new
    When were you diagnosed? Nov 2009
    What stage? 3c (Serous Carcinoma Papillary) OVC

    Are you the patient, or a caregiver: Patient

    What was your highest CA125?1500
    What was your lowest? 15
    What is it now? 25

    What's your current status? Recurrence Sept 2010..after having 9 rounds of Carbo/Taxol. Its said to be around my liver and spleen.

    Currently I transfered my care to Fox Chase, and I get a port put in Nov, 17, 2010. I start a clinical trial AMG 386/Doxil on Nov. 22nd 2010.
    Doctor's are saying that I may never be in remission. They want to focus on shrinking and controlling the disease.
    But I'm believing in a higher power that has the ability to cure me completely.
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  • MoMomsa
    MoMomsa CSN Member Posts: 16
    #49
    Getting us all on the same page
    Seeing the strength here and everything everyone goes through makes me realize how blessed I am.

    I am/was the patient
    DX Jan/2010
    Stage 1 something....
    Two surgeries for Ovarian Cancer
    No treatment needed. No idea of my CA125...but I was told it's normal. I think I'll find out just so I know.

    They found it by "accident" and I was deemed a miracle. After seeing everyone's story here. I see that I am. I almost felt guilty for posting, mine is so minor compared to everyone elses. But, I'm so thankful, it's a reminder to me to spread the word about this almost silent disease to everyone I know.
    7 months later--August 2010 I was diagnosed with Thyroid cancer. HAd RAI and now I'm doing fine.
    Hugs to all,
    Janet
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  • lenjam
    lenjam CSN Member Posts: 51
    #50
    MoMomsa said:

    Getting us all on the same page
    Seeing the strength here and everything everyone goes through makes me realize how blessed I am.

    I am/was the patient
    DX Jan/2010
    Stage 1 something....
    Two surgeries for Ovarian Cancer
    No treatment needed. No idea of my CA125...but I was told it's normal. I think I'll find out just so I know.

    They found it by "accident" and I was deemed a miracle. After seeing everyone's story here. I see that I am. I almost felt guilty for posting, mine is so minor compared to everyone elses. But, I'm so thankful, it's a reminder to me to spread the word about this almost silent disease to everyone I know.
    7 months later--August 2010 I was diagnosed with Thyroid cancer. HAd RAI and now I'm doing fine.
    Hugs to all,
    Janet

    Mom - Stats
    I am the daughter of patient


    When: July 2010
    DX: OVCA Stage IV
    Surgery: July 29, 2010
    (numerous complications and hospital stays)

    CA125 - 1748 before surgery
    Lowest: hopefully to come after 4 more infusions of carbo/taxol
    Now: 99
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  • RoniLynn
    RoniLynn CSN Member Posts: 8
    #51
    When were you diagnosed?
    When were you diagnosed? October, 2009
    What stage? IV

    I am the patient
    OVCA

    What was your highest CA125? 2000+
    What was your lowest? 12
    What is it now? 12

    What's your current status? 6 treatments of Carbo/Taxol from Dec, 2009 til March, 2010. NED for April and May, 2010 and then recurrence found in late May. Been on different chemo meds (can't remember the names) for 2 out of ever 3 weeks since. After CT scan last week, found out that my "spots" have grown. I go to the Oncologist next week, I may be starting a clinical trial so that we can give my body a rest from chemo.

    Roni
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  • ten101
    ten101 CSN Member Posts: 14
    #52
    RoniLynn said:

    When were you diagnosed?
    When were you diagnosed? October, 2009
    What stage? IV

    I am the patient
    OVCA

    What was your highest CA125? 2000+
    What was your lowest? 12
    What is it now? 12

    What's your current status? 6 treatments of Carbo/Taxol from Dec, 2009 til March, 2010. NED for April and May, 2010 and then recurrence found in late May. Been on different chemo meds (can't remember the names) for 2 out of ever 3 weeks since. After CT scan last week, found out that my "spots" have grown. I go to the Oncologist next week, I may be starting a clinical trial so that we can give my body a rest from chemo.

    Roni

    getting on the same page

    When were you diagnosed? (May 2009)
    What stage? (Ic)

    Are you the patient, or a caregiver: (patient)
    OVCA, clear cell, or PPC? (OVCA)

    What was your highest CA125? (190)
    What was your lowest? (2)
    What is it now? (2)

    What's your current status? I just had CT scan and CA 125, only thing on my CT scan is gall stones and I know I can deal with those after surgery and chemo treatments.

    I too feel almost guilty posting my status as I was one of the lucky ones to be diagnosed early and to have gotten outstanding medical care from a great surgeon and oncologist. And although I am free of this dread disease at this point, they still go in and look for it every three months so the idea of it never goes away completely. I often say I am the poster child for early diagnosis as I feel so good it's scary. I will keep supporting and encouraging research to somehow find it early because I am proof that works or for some kind of vaccine to prevent recurrence. You all inspire me and I think of you often and continue to pray for a cure.
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  • Lmm041
    Lmm041 CSN Member Posts: 33
    #53
    When were you diagnosed?
    When were you diagnosed? March, 2010)
    What stage? (IV)

    Are you the patient, or a caregiver: (caregiver)
    OVCA, clear cell, or PPC? (OVCA)

    What was your highest CA125? (266)
    What was your lowest? (less than 1)
    What is it now? (2)

    What's your current status? (She is NED, following 3 neoadjuvant treatments of Carbo/Taxol, then surgery, then 3 more treatments of Carbo/Taxol) and 2 out of 12 maintenance doses of Taxol.
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  • Sandy10
    Sandy10 CSN Member Posts: 80
    #54
    When were you diagnosed?
    When were you diagnosed? February 1, 2010
    What stage? IIIC

    Are you the patient, or a caregiver: Patient
    OVCA, clear cell, or PPC? OVCA

    What was your highest CA125? 241
    What was your lowest? 8.7
    What is it now? 8.7

    What's your current status? NED!! Since Sept 20th. Had major debulking on Feb 10th 2010 (including ovaries,appendix,omentum and 2 bowel resections) 4 1/2 months of Carbo/Taxol chemo with IP chemo as well. Just want to say that CANCER SUCKS!!!!
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  • djinco
    djinco CSN Member Posts: 87
    #55
    Great Thread
    Diagnosed: February 1, 2010, complete hysterectomy and de-bulking surgery on that date
    Stage 3B Ovarian, Stage 2B Uterine
    I'm the patient.
    Highest CA-125 was 77
    Current and lowest so far 5
    Currently on maintenance chemo, 3 weeks on, one off, possibly 12 complete cycles, 8 cycles to go: Taxol
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  • cancer survivor x 4
    cancer survivor x 4 CSN Member Posts: 177
    #56
    Good Thread

    When were you diagnosed? June 2009
    What Stage 2b
    Patient
    clear cell
    Highest CA125- 200's
    Lowest CA125-5
    What is it now 7
    What is your current status? I am NED following 6 treatments of Carbo/Taxol.
    Thank-You, Carlene
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  • azgrandma
    azgrandma CSN Member Posts: 609 Member
    #57
    cancer survivor x 4 said:

    Good Thread

    When were you diagnosed? June 2009
    What Stage 2b
    Patient
    clear cell
    Highest CA125- 200's
    Lowest CA125-5
    What is it now 7
    What is your current status? I am NED following 6 treatments of Carbo/Taxol.
    Thank-You, Carlene

    When were you diagnosed? Nov
    When were you diagnosed? Nov 2009
    What stage? (IIIc)

    Are you the patient, or a caregiver: I am the patient
    OVCA, clear cell, or PPC? (do not know

    What was your highest CA125? (1300
    What was your lowest? 7
    What is it now? 8

    What's your current status? (I am NED, following 4 treatments of Carbo/Taxol)
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  • beth1465
    beth1465 CSN Member Posts: 63 Member
    #58
    Great idea...
    When were you diagnosed? Dec. 2009
    What stage? IIIc

    Are you the patient, or a caregiver: patient
    OVCA, clear cell, or PPC? OVCA

    What was your highest CA125? 3600
    What was your lowest? 21
    What is it now? 720

    What's your current status? Had debulking surgery Dec. 2009; finished carbo/taxol 8 treatments in June 2010. Proclaimed NED July 2010; CA-125 up to 49 in Sept; up to 314 in Oct; 720 in Nov. Beginning Gemzar treatments tomorrow 11/16. CT scan shows nothing.
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  • madeline236
    madeline236 CSN Member Posts: 17
    #59
    bump

    I am in process of being diagnosed and wanted exactly the information in this thread so I'm bumping it up for other newbies as it took me an hour to find this on this board and I suspect others will be interested. I'd encourage people to add their stats to this list too.

    I know you can't look at CA125 levels and staging and compare from one person to another as it's all so person-specific but I can't help it. I want to compare myself to others and find hope.

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  • Tethys41
    Tethys41 CSN Member Posts: 1,383 Member
    edited October 2016 #60
    Stats

    You're right, it is hard to compare becasue each of us is very different.  And, unfortunately, many of the women on this thread are no longer with us.  But here goes:

    When were you diagnosed? (July 2009)
    What stage? (IIIc)

    Are you the patient, or a caregiver: (patient)
    OVCA, clear Cell or PPC? (OVCA)

    What was your highest CA125? (4600)
    What was your lowest? (<1) 
    What is it now? (2.5)

    What's your current status? NED since February 2010

    I am BRCA1 positive

    I am involved with a group of women who are pursuing integrative therapies in addition to or in lieu of current, active treatment.  Every one of them has had at least first line chemo.  My observation is that two things seem to be consistent with the long term survivors who stay NED or stay NED longer.  They either started integrative therapies immediately upon starting traditional treatment, i.e. they didn't wait until after they were in remission.  It also seems there is a link with long term survival and women who received more than the normal amount of chemo treatments for their first line chemo,  It's not a clinical trial, obviously, but there are about 100 women in our group,and the results are pretty consistent.  

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  • tealnpink
    tealnpink CSN Member Posts: 30
    #61
    Maybe we should start a new

    Maybe we should start a new roll call.

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