Getting us all on the same page....

2

Comments

  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #22
    Mawty said:

    Thanks, Carlene - nice idea
    Diagnosed November 2008
    What Stage 3C
    I am the Patient
    Not sure where the cancer started but ovarian and secondary something.
    Highest CA125 58
    Lowest CA125 22
    Now 22
    Current status For the first time in 2 years (nearly) I am not on chemo. The doctor felt since I was at 22 we could take the chance for a break because Taxol seems to be the only drug that works on me and my body was overloaded. She said she doesn't have much more in the arsenal because we've tried a lot. I'm living every day to the fullest right now!

    Next appointment: November 2

    Wow you mind reader!!!!
    I can't believe it!!! I was in the car today thinking of you guys or should I say girls! And thought I would start a thread asking for everyones stats!thanks Carlene you saved me a job! I was thinking of you all after the dj played Mariah Carey , A hero lies in you! Not really my kind of music, but I was blubbering listening to the words! God bless you all x (if you get a chance have a listen)
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #23
    Mawty said:

    Thanks, Carlene - nice idea
    Diagnosed November 2008
    What Stage 3C
    I am the Patient
    Not sure where the cancer started but ovarian and secondary something.
    Highest CA125 58
    Lowest CA125 22
    Now 22
    Current status For the first time in 2 years (nearly) I am not on chemo. The doctor felt since I was at 22 we could take the chance for a break because Taxol seems to be the only drug that works on me and my body was overloaded. She said she doesn't have much more in the arsenal because we've tried a lot. I'm living every day to the fullest right now!

    Next appointment: November 2

    Diagnosed march 2010 What
    Diagnosed march 2010
    What stage 3 (not sure about the letter bit! Onc has never said)
    I am the daughter.
    PPC
    Highest ca125 gosh it was over 1000, I can't remember exactly would have to ask mum
    Lowest so far. 26 after 3round of chemotherapy haven't been told since then , but I am assuming lower still,.
    Mum has had 3 rounds of chemotherapy followed by debulking surgery ,1more chemotherapy so 2more lots of chemotherapy to go.surgeon has said he managed to remove all trace of the b*****d!!!!
  • leesag
    leesag Member Posts: 621 Member
    #24
    Mum2bellaandwilliam said:

    Diagnosed march 2010 What
    Diagnosed march 2010
    What stage 3 (not sure about the letter bit! Onc has never said)
    I am the daughter.
    PPC
    Highest ca125 gosh it was over 1000, I can't remember exactly would have to ask mum
    Lowest so far. 26 after 3round of chemotherapy haven't been told since then , but I am assuming lower still,.
    Mum has had 3 rounds of chemotherapy followed by debulking surgery ,1more chemotherapy so 2more lots of chemotherapy to go.surgeon has said he managed to remove all trace of the b*****d!!!!

    bump
    darndoris
  • angiedryden
    angiedryden Member Posts: 58
    #25
    leesag said:

    bump
    darndoris

    Stats
    When were you diagnosed? April 2010
    What stage? IV

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

    What was your highest CA125? 58.6
    What was your lowest? 4.5
    What is it now? 5.8

    Mom had her 6th treatment of Carbo/Taxol last week. Hopefully she is finished with treatments for a long time. They kept the port in just in case. She isn't feeling very well after this treatment. With the first 5 treatments she didn't feel this bad.
  • kathryn1
    kathryn1 Member Posts: 88 Member
    #26
    When were you diagnosed?
    When were you diagnosed? June 3 2009
    What stage? 2C

    Patient/OVC

    What was your highest CA125? I don't remember..
    What was your lowest? 5
    What is it now? 5

    I am NED :)

    Kathryn
  • leesag
    leesag Member Posts: 621 Member
    #27
    This REALLY needs to stay
    This REALLY needs to stay bumped, so new ladies don't feel so darn alone when their CA125s are ginormous, or they've been diagnose late stage or PPC.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #28
    leesag said:

    This REALLY needs to stay
    This REALLY needs to stay bumped, so new ladies don't feel so darn alone when their CA125s are ginormous, or they've been diagnose late stage or PPC.

    Bumping it to the top...

    Bumping it to the top...
  • Angelasmom2
    Angelasmom2 Member Posts: 146
    #29
    Hissy_Fitz said:

    Bumping it to the top...

    Bumping it to the top...

    Caregiver
    My daughter was dionoised and had surgery on (July 8, 2010,
    her 38th birthday).

    Stage (3c)

    I am a (caregiver)

    Her CA125 started out (almost 6000)

    Lowest (176) after second chemo. Haven't hear from her third chemo yet. She has her fourth chemo Oct. 18.

    She is fightning for her life.
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #30
    Mary Reporting
    When were you diagnosed? (Jul, 2009)
    What stage? (IIIc)

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

    What was your highest CA125? (366)
    What was your lowest? (4)
    What is it now? (4)

    What's your current status? I am NED, following 18 weekly treatments Taxol and 6 treatments carboplatin via IP.
  • vj1
    vj1 Member Posts: 150
    #31
    MK_4Dani said:

    Mary Reporting
    When were you diagnosed? (Jul, 2009)
    What stage? (IIIc)

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

    What was your highest CA125? (366)
    What was your lowest? (4)
    What is it now? (4)

    What's your current status? I am NED, following 18 weekly treatments Taxol and 6 treatments carboplatin via IP.

    STATS
    Thanks Carlene---you are a mind reader!

    Dx 5/2009
    stage 3 C
    I am the patient
    OVCA
    Highest CA125 111
    Lowest 5.2
    Now 5.2
    I am NED after receiving 6 rounds of carbo/taxol ending in Nov 2009.

    V
  • upsofloating
    upsofloating Member Posts: 466 Member
    #32
    Good idea Carlene!
    When were you diagnosed? (Jan, 2008)
    What stage? (IV)

    Are you the patient, or a caregiver: (patient)
    OVCA, clear cell, or PPC? (presumed UPSC; c/b ovca or ppc, definitely papillary serous)

    What was your highest CA125? (658, Apr '10)
    What was your lowest? (8)
    What is it now? (111)

    What's your current status? (In treatment for recurrence, Sept '09, chemo since Jan '10, currently on Gemzar)

    --Annie
  • jloe
    jloe Member Posts: 174
    #33
    vj1 said:

    STATS
    Thanks Carlene---you are a mind reader!

    Dx 5/2009
    stage 3 C
    I am the patient
    OVCA
    Highest CA125 111
    Lowest 5.2
    Now 5.2
    I am NED after receiving 6 rounds of carbo/taxol ending in Nov 2009.

    V

    Thanks, Charlene
    DX - 8/2006
    Stage IIIc
    I am the patient
    OVCA
    Highest CA125 - 660
    Lowest 9 (last week)

    I have had 9 surgeries and 43 rounds of many variations of chemo treatments including 18 IP treatments. Currently on Avastin every 3 weeks (IV) and Cytoxan 50mg daily. I will have a PET/CT scan in December to see the 2 small tumors stand. I am very lucky to have a great medical team and support from my husband.
  • srwruns
    srwruns Member Posts: 343
    #34
    Great thread
    When were you diagnosed? (Oct. 14, 2010)
    What stage? (Ic)

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

    What was your highest CA125? (50)
    What was your lowest? (no update as yet)
    What is it now? (no update)

    What's your current status? (to start Chemo Nov. 19th; under treatment also for possible blood clot formation...Lovenox injection 1x a day)

    Next follow up on Nov. 5th perhaps I will get updated CA 125 numbers.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #35
    good idea
    DX June 2007

    Stage IIIC grade 3

    I am the patient but not always patient
    OvCa papillary serous carcinoma

    HIghest CA125 was 489
    Lowest was 5
    Current status is 75

    I am on 4th line chemo (carbo and dense dose taxol), that started in September 10 to treat recurrence from November 2008, (cis/gem and doxil help keep it bay, but not NED.

    Kathleen
  • Karen9182
    Karen9182 Member Posts: 60
    #36
    kayandok said:

    good idea
    DX June 2007

    Stage IIIC grade 3

    I am the patient but not always patient
    OvCa papillary serous carcinoma

    HIghest CA125 was 489
    Lowest was 5
    Current status is 75

    I am on 4th line chemo (carbo and dense dose taxol), that started in September 10 to treat recurrence from November 2008, (cis/gem and doxil help keep it bay, but not NED.

    Kathleen

    Thanks...great idea

    When were you diagnosed? (Dec, 2009)
    What stage? (IIIc)

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

    What was your highest CA125? (64)
    What was your lowest? (8)
    What is it now? (11)

    What's your current status? (I am NED, following 6 treatments of Carbo/Taxol) and 4 IP treatments of cisplatin and taxol.
  • softD
    softD Member Posts: 69
    #37
    same page..great idea!
    Dx June 2008
    Stage 3c
    I am ovca patient
    Highest ca125...200
    lowest ca125....6
    now.....179

    Currently I am just home after 2nd debulking op (1st recurrence)
    Hoping to start chemo again next week (IV carbo/taxol)

    Take care everyone,
    love Carolyn xx
  • NCEllen
    NCEllen Member Posts: 115 Member
    #38
    Signing the Page too
    When were you diagnosed? (January 28, 2009)
    What stage? (IIIc)

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

    What was your highest CA125? (769)
    What was your lowest? (2.3)
    What is it now? 15 or 20 (two diff. ref. labs, but still within normal limits)

    What's your current status? I am NED, following 6 treatments of Carbo/Taxol that ended July, 2009.
    Oct. 26, 2010 found me on vacation with a partial small bowel obstruction- resolved in hospital. I feel well, but terrified of another bowel obstruction! I will have another CA-125 in Dec. if I'm not away celebrating the birth of our first grand-daughter ;)

    Counting my Blessings daily and sending up prayer 'bumps' for all
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #39
    Nancy591
    Dx: September 2008
    stage 4

    OVCA papillary serous

    highest: 720
    lowest: 6
    now: 124 My tumor marker tripled in the 5 wks I've been off chemo to prepare for my clinical trial. This is the biggest jump I've had since I had my recurrence.

    I recurred 7 to 8 months post chemo. I restarted chemo in January 2010 for my first recurrence. Doxil for 7 infusions with no success, Carbo/Gemzar next. Carbo was dropped after 2 infusions d/t allergic reaction. Continued with Gemzar alone. PET showed stability but tumor marker started rising. Another PET was done after 2 additonal infusions. Newest PET showed possible slight advancement. It was decided to start a clinical trial ENMD 2076. Like mentioned above, my tumor marker tripled in the 5 weeks I've been off chemo and this is the highest my ca125 has been since my recurrence. I start my trial tomorrow.
  • froggy1
    froggy1 Member Posts: 205
    #40
    Adding my info
    When were you diagnosed? September 2008
    What stage? (IIIc)

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

    What was your highest CA125? (380) What was your lowest?(5) What is it now? (16)

    What's your current status? (I started out with 8 rounds of carbo/taxotere, finished in Feb.09. was NED, at that point, started a year of taxol maintenance, interrupted in November of '09 with a complete bowel obstruction and surgery, continued maintenance after that until June of ,10.'Supposedly NED at that time, but I don't think the CT showed everything.
    'Went in this month for 3 month, thought I had bowel obstruction, my CA125 was only 14, so he felt good about that(I didn't as baseline is 5) They did a CT to check for bowel issues and found enlarged lymph nodes, had PT/CT, which showed more cancer. SO, I am now starting a 6 treatment of carbo/doxil.. THe nodes are also in inoperable places, not good.
    I also have a new Doctor, as my left the practice, so that is an adjustment....
  • lillin20
    lillin20 Member Posts: 8
    #41
    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

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