Getting us all on the same page....

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
It's hard to keep everyone's info straight sometimes, so I thought it might be helpful to start a thread where we all share our "numbers".

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

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

What was your highest CA125? (4000)
What was your lowest? (3.8)
What is it now? (6.4)

What's your current status? (I am NED, following 6 treatments of Carbo/Taxol) and 8 out of 12 maintenance doses of Taxol.

Carlene
«13

Comments

  • newhopechurchli
    newhopechurchli Member Posts: 126
    #2
    Tricia here...
    I was diagnosed October 11th, 2007
    Stage 3III (Dual Primaries actually... endometrial stage 1 grade II and ovarian 3 III)
    I am the patient
    Ovarian
    Highest #.... very low in comparison to others I have seen here. It was around 150
    lowest # 8
    Now # 12
    Current Status.... NED
  • Mwee
    Mwee Member Posts: 1,338
    #3
    Hi Carlene
    My saga, so far

    Diagnosed: May 2006
    Stage: lllC Ovarian

    Highest CA125: ?
    lowest: 5
    Currently: 66

    Current status: in 1st recurance, started chemo again Jan/10 had 4 infusions of carbo/taxol, 4 infusions of Doxil and currently into my third round of gemzar/carbo one week and gemzar the next with one week off. This regament has brought my CA125s down from 114 to 66 this past week and I'm hoping to be back into the normal range one day real soon. I will probably opt for maintenance doses once I reach that point.

    Maria
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #4
    What a good idea
    When were you diagnosed? (Nov, 2009)
    What stage? (4)

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

    What was your highest CA125? (1,280 - now!)
    What was your lowest? (34)
    What is it now? (1,280)

    What's your current status? Only been remission for 7 months. Just about to enter into second line treatment Doxil. No date given yet but within next 2 months. My cancer appears to be agressive according to my oncologist as the numbers jumped from 71 to 1,280 in 3 months.

    Tina
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #5
    Disneynutt stats
    Diagnosed: August, 2009
    Stage: 3C
    patient
    OVCA

    Highest #: 1500
    Lowest: I haven't called to find out my latest. Too chicken. I figure if the number has increased the doctor would call.
    Now: I hope it's around 6

    Current status: After undergoing chemo (first gemzar; then carbo/taxol; then taxotere/avastin) for almost a year and a half I am on a 2-month break and am loving it. Feels so good. My next ocn/gyn appt. is Dec. 16 and I think it would be so nice if my CA125 was still low. I have never had a PET scan though so don't know if I'm NED or not. My chemo nurse told me I'd never be in remission.
  • joan60
    joan60 Member Posts: 89
    #6
    status
    Diagnosed Feb. 2010
    Stage III
    I am the patient
    I had Ovarian
    My highest count was 4000
    My lowest was 12
    I have my 3 month checkup in Nov., Hopefully the same.
    I am Ned free since July after 6 cycles of Taxotere, Amifostine through port in chest
    Cisplatin through port in abdomen. All this the first week.
    Second week I had Taxol through port in abdomen, this is not including any premeds.

    Wishing everyone health and happiness!
    Joan
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #7
    good thread
    When were you diagnosed? (June 2010)
    What stage? (IIIc)

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

    What was your highest CA125? (338)at surgery
    What was your lowest? (3)
    What is it now? (3)

    What's your current status - I am currently receiving carbo/taxol completed four rounds so far, might have to have surgery after chemo as I was not optimally debulked as the cancer was covering entire colon and as I was having hysterectomy for recurrent benign polyps my dr did not want to leave me with a permanent colostomy.
  • kikz
    kikz Member Posts: 1,345 Member
    #8
    Numbers
    Diagnosed 3/2010

    I am the patient

    Stage IIIc ovarian

    Highest CA 125 was 8900+

    Lowest and most current is 7

    I just finished chemo

    When do they tell you if you are NED?

    I have appointments with onco and surgeon onco first part of November.
  • JoanC
    JoanC Member Posts: 231 Member
    #9
    Cafewoman53 said:

    good thread
    When were you diagnosed? (June 2010)
    What stage? (IIIc)

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

    What was your highest CA125? (338)at surgery
    What was your lowest? (3)
    What is it now? (3)

    What's your current status - I am currently receiving carbo/taxol completed four rounds so far, might have to have surgery after chemo as I was not optimally debulked as the cancer was covering entire colon and as I was having hysterectomy for recurrent benign polyps my dr did not want to leave me with a permanent colostomy.

    SAME PAGE
    Diagnosed (April 3, 2008)
    What Stage (3 c)

    I am the Patient
    OVCA
    Highest CA125(1900)
    Lowest CA125 (6)
    Now (6)

    Current status since Oct 2008 Ned
  • pat1070
    pat1070 Member Posts: 13
    #10
    Good idea Carlene
    I was diagnosed (Feb,2010)

    Stage 111

    I am the patient

    I don't know if I am OVCA or PPC

    My Highest Ca125 Was 550
    My Lowest was 28
    I don't know what it is now as I have a test On Tuesday

    I have learned more about this disease from this website than I did from any Dr Thank you so much.
  • zinaida
    zinaida Member Posts: 221
    #11
    pat1070 said:

    Good idea Carlene
    I was diagnosed (Feb,2010)

    Stage 111

    I am the patient

    I don't know if I am OVCA or PPC

    My Highest Ca125 Was 550
    My Lowest was 28
    I don't know what it is now as I have a test On Tuesday

    I have learned more about this disease from this website than I did from any Dr Thank you so much.

    I was diagnosed Feb 14,
    I was diagnosed Feb 14, 2007

    Stage 2C

    I am patient

    OVCA ( and breast cancer, stage 1, same day sergery)

    Highest CA125 800th

    Lowest CA125 7

    Now CA125 23

    First reccurancy OVCA January 2010,8 session jemzar/carbo, finished June 17. Every 3 month check up. October 5 was "OK", next - January 4,2011. Last PET/CT scan was March 2010, light up nothing.
  • clamryn
    clamryn Member Posts: 508
    #12
    When were you diagnosed?
    When were you diagnosed? (Sept, 1991)
    What stage? (Ic)

    Are you the patient, or a caregiver: (patient)
    OVCA

    What was your highest CA125? 485
    What was your lowest? 6
    What is it now? 37.4

    What's your current status? (Recurrence in 2008 and was then NED Recurrence again in 2010 and just finised with 8 treatments of Doxil but still have one spot on my liver. Currently taking Metformin and I will be on it for 2 more months when I will then get a PET/Scan))

    Linda
  • kellyh33
    kellyh33 Member Posts: 287
    #13
    Mom was offically diagnosed
    Mom was offically diagnosed June 18/2010
    Stage 3/4
    I don't know what kind of ovarian cancer she has.
    Highest CA 125 count was 14,301
    Lowest remains to be seen. We quit asking for the numbers after her second round which was 6,804
    Mom is going for her fifth treatment Oct 25 of carbo/taxol. Unable to operate due to the location of tumor :(
  • kellyh33
    kellyh33 Member Posts: 287
    #14
    CA 125
    I am amazed at the numbers. It freaks me out that mom's is so high even though the oncologist told us not to pay attention to it.
  • kellyh33
    kellyh33 Member Posts: 287
    #15
    CA 125
    I am amazed at the numbers. It freaks me out that mom's is so high even though the oncologist told us not to pay attention to it.
  • kellyh33
    kellyh33 Member Posts: 287
    #16
    CA 125
    I am amazed at the numbers. It freaks me out that mom's is so high even though the oncologist told us not to pay attention to it.
  • leesag
    leesag Member Posts: 621 Member
    #17
    When were you diagnosed?
    When were you diagnosed? January, 2010
    What stage? IIIC

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

    What was your highest CA125? 9,824 (at diagnosis)
    What was your lowest? 12
    What is it now? 12

    What's your current status? I am NED, following 6 treatments of Carbo/Taxol, last chemo June 24, 2010

    Leesa
  • confuzzled
    confuzzled Member Posts: 21
    #18
    Stats
    When were you diagnosed? March 2010
    What stage? III

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

    What was your highest CA125? 290
    What was your lowest? 220
    What is it now? will find out next week.

    What's your current status? Currently on Doxil, the first 6 treatments of Carbo/Toxil did not work for me - discovered I am platin resistant.
  • South Jersey
    South Jersey Member Posts: 89
    #19
    When were you diagnosed?
    When were you diagnosed? (July, 27, 2009)
    What stage? (IIIc)

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

    What was your highest CA125? (170)
    What was your lowest? (11.1)
    What is it now? (13.3)

    What's your current status? (I am NED. Finished up Carbo/Taxol Dec., 2009. Also had one round of cisplatin before having to have my port removed because of complications)

    Beth
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #20
    South Jersey said:

    When were you diagnosed?
    When were you diagnosed? (July, 27, 2009)
    What stage? (IIIc)

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

    What was your highest CA125? (170)
    What was your lowest? (11.1)
    What is it now? (13.3)

    What's your current status? (I am NED. Finished up Carbo/Taxol Dec., 2009. Also had one round of cisplatin before having to have my port removed because of complications)

    Beth

    When were you diagnosed?
    When were you diagnosed? (Sept, 2008)
    What stage? (IIIc)

    Are you the patient, or a caregiver: (patient)
    OVCA, clear cell, or PPC? (actually a rare form of uterine cancer that mimics OVC called UPSC)

    What was your highest CA125? (172)
    What was your lowest? (11)
    What is it now? (155)

    What's your current status? (I am in treatment for my 2nd recurrence. I recurred 1st in November 2009 after 6 rounds carbo/taxol and 33 rounds external pelvic radiation and a 5 1/2 month remission. 10 rounds of weekly taxol and I was again NED, only to have the same lymph nodes light up in my next 3-month CT/PET scan. So I did 7 more rounds of weekly taxol until that stopped working; and have recently completed 2 rounds of Doxil with more to come all winter at least).
  • Mawty
    Mawty Member Posts: 133
    #21
    lindaprocopio said:

    When were you diagnosed?
    When were you diagnosed? (Sept, 2008)
    What stage? (IIIc)

    Are you the patient, or a caregiver: (patient)
    OVCA, clear cell, or PPC? (actually a rare form of uterine cancer that mimics OVC called UPSC)

    What was your highest CA125? (172)
    What was your lowest? (11)
    What is it now? (155)

    What's your current status? (I am in treatment for my 2nd recurrence. I recurred 1st in November 2009 after 6 rounds carbo/taxol and 33 rounds external pelvic radiation and a 5 1/2 month remission. 10 rounds of weekly taxol and I was again NED, only to have the same lymph nodes light up in my next 3-month CT/PET scan. So I did 7 more rounds of weekly taxol until that stopped working; and have recently completed 2 rounds of Doxil with more to come all winter at least).

    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

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