I'm a newbee in need of support

Bstrange
Bstrange Member Posts: 87
edited March 2014 in Ovarian Cancer #1
Hello,

My name is Barbara and I was diagnosed with Stage 4 B Peritoneal/ Ovarian cancer last year. I had surgery and a grocery list was removed from me, but Praise God it was not in any of my lymph nodes or vital organs. I went under chemo for 6 treatments and was clear for 7 months. In september my numbers began climbing and I had a CAT and started chemo again in October. After 4 treatments I was told my body had started to resist so I was changed to another type in January. So far it's working. I only have results of the CA after the 1st session. It has gone from 59 to 38. Yesterday, I went to my 6 month routine check with my surgeon/ gyn and he informed me that the CAT showed I was stable. The tumor hasn't grown. I was unaware I had a tumor, I thought we were treating the numbers, so I was/am shaken up a bit. I would love to talk to someone who has been in the same "boat" to talk too.

Thank you for your time and God Bless You.
«1

Comments

  • Lauracec
    Lauracec Member Posts: 101
    #2
    welcome Barbara
    Hello Barbara, welcome to this site. there is a lot of support here. it's great that the doctor says you are stable but that has to be a little unnerveing to hear you have a tumor that you didn't know about. I am stage 3c or 4 depending on what doctors report I read. I was left with a 5cm tumor in me that was wrapped around the main arterie to my liver so they couldn't remove it. how big does the doctor say your tumor is? and also take comfort that it also could be dead from the chemo already. I will pray for peace for you about it. God Bless you, Laura
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    Welcome
    Hi Barbara, glad to have you here with us, you will find great support, encouragement, love, strength and knowledge from this group. I can only imagine how shocked you were to hear about the tumor, but it could be very small ~ request a copy of the report so you know for sure. I always ask for one, sometimes to the docs things look good but that doesnt' mean we don't more growth or new tumors, they have a different perspective sometimes than we do.

    Congratulaions on the lower CA125 already, that is great news and worth celebrating. Sending lots of prayers ♥ hugs Bonnie
  • JoanC
    JoanC Member Posts: 231 Member
    #4
    Welcome
    Barbara,
    Welcome, This is the right place to get answers and make friends that understand what you are feeling and going though. Being stable is a GOOD thing and your CA125 coming down is an even BETTER thing.
    ((HUGS)) Joan
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    Same boat
    My CT scans are clear but my CA125 started up while on a maintenance dose of Taxol. You can read my story by clicking on the name under my picture and seeing my post of history. I got up to a CA125 of 84 and was started on an anti estrogen pill. That has brought the number down to 50 for two months and I just had another CT and it still does not show tumors. A CT will only show tumors larger than 1/2 cm and since we know that the CA125 is a good marker for me, we know that it is growing but still small.
    A drop of 20 points is good for you it seems to me. I am considered stable at present too. I am not shaken with this news after 20 months of chemo, as that is the reality for Stage IV. I feel very fortunate to have survived all the chemo,surgery, and all the stress for two years. Yippee!!! I'm going to Japan next month to see a son. I may have to start another chemo when I return but will face that when it comes.
    Glad to have another friend on this post... It has been a big help to me. Saundra
  • Bstrange
    Bstrange Member Posts: 87
    #6
    Lauracec said:

    welcome Barbara
    Hello Barbara, welcome to this site. there is a lot of support here. it's great that the doctor says you are stable but that has to be a little unnerveing to hear you have a tumor that you didn't know about. I am stage 3c or 4 depending on what doctors report I read. I was left with a 5cm tumor in me that was wrapped around the main arterie to my liver so they couldn't remove it. how big does the doctor say your tumor is? and also take comfort that it also could be dead from the chemo already. I will pray for peace for you about it. God Bless you, Laura

    Thank you
    Laura,
    Thank you so much for your email. It has helped a great deal. As far as I know it's either on my bowel or my peritioneal.
    So, I'm lucky, huh?
    I trained horses for many years and seeing your picture makes me realize how much I miss my horse. I love your paint.
    I would love to correspond on the regular basis if that is ok with you.
  • Bstrange
    Bstrange Member Posts: 87
    #7
    BonnieR said:

    Welcome
    Hi Barbara, glad to have you here with us, you will find great support, encouragement, love, strength and knowledge from this group. I can only imagine how shocked you were to hear about the tumor, but it could be very small ~ request a copy of the report so you know for sure. I always ask for one, sometimes to the docs things look good but that doesnt' mean we don't more growth or new tumors, they have a different perspective sometimes than we do.

    Congratulaions on the lower CA125 already, that is great news and worth celebrating. Sending lots of prayers ♥ hugs Bonnie

    Thank you
    Thank you Bonnie for your words of encouragement. I was told that the tumor is 3cm.
    I looked around where I live for a support group, but I could not find one. I'm glad I turned to this site.
    I'm still a bit down from knowing what I know, but I need to just keep telling God to handle it because I can't.
    Thanks again,
    I'll add you to my prayer line.
    Hugs,
    B

    How did you get your picture to come up over your name?
  • Bstrange
    Bstrange Member Posts: 87
    #8
    JoanC said:

    Welcome
    Barbara,
    Welcome, This is the right place to get answers and make friends that understand what you are feeling and going though. Being stable is a GOOD thing and your CA125 coming down is an even BETTER thing.
    ((HUGS)) Joan

    Thank you
    Thank you, Joan.

    It's good to hear from people with the same experiences. I will add you to my prayer line.
    Barbara
  • Bstrange
    Bstrange Member Posts: 87
    #9
    saundra said:

    Same boat
    My CT scans are clear but my CA125 started up while on a maintenance dose of Taxol. You can read my story by clicking on the name under my picture and seeing my post of history. I got up to a CA125 of 84 and was started on an anti estrogen pill. That has brought the number down to 50 for two months and I just had another CT and it still does not show tumors. A CT will only show tumors larger than 1/2 cm and since we know that the CA125 is a good marker for me, we know that it is growing but still small.
    A drop of 20 points is good for you it seems to me. I am considered stable at present too. I am not shaken with this news after 20 months of chemo, as that is the reality for Stage IV. I feel very fortunate to have survived all the chemo,surgery, and all the stress for two years. Yippee!!! I'm going to Japan next month to see a son. I may have to start another chemo when I return but will face that when it comes.
    Glad to have another friend on this post... It has been a big help to me. Saundra

    The boat will float!
    Thank you for your post. I have faith that the Lord will get me through this. My diagnosis was a IV -B. Extensive surgery and after the first chemo my CA stayed at 13 from January until it shot up in September. You have put my situation in perspective and I thank you for that.

    Hint: When I went to see my sons in California my doctor told me to coat the inside of my nostrils (not a lot) with polysporin. There were passengers coughing all around me and I came off without a sniffle.

    Have fun! Can't wait to hear about your trip. I always wanted to go Japan because I could buy pants I wouldn't needto hem up!
    I'm 5'0"

    Hugs,
    B
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #10
    Welcome
    Welcome Barb, so sorry to meet this way.You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support.I was dx 2/08 with 3c and am still in treatment .Monday will be my last. I've had 14 treatments non stop.I'm looking for a break. Last month my ca-125 was 34, before surgery I was 13,000.
    Hugs and Prayers
    Terry
  • Bstrange
    Bstrange Member Posts: 87
    #11
    ladyjogger31 said:

    Welcome
    Welcome Barb, so sorry to meet this way.You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support.I was dx 2/08 with 3c and am still in treatment .Monday will be my last. I've had 14 treatments non stop.I'm looking for a break. Last month my ca-125 was 34, before surgery I was 13,000.
    Hugs and Prayers
    Terry

    Thank you
    Thank you for the welcome! 13,000 WOW. I thought mine was bad at 6,750. Keep up the great work.
    God Bless,
    Barbara
  • Lauracec
    Lauracec Member Posts: 101
    #12
    Bstrange said:

    Thank you
    Laura,
    Thank you so much for your email. It has helped a great deal. As far as I know it's either on my bowel or my peritioneal.
    So, I'm lucky, huh?
    I trained horses for many years and seeing your picture makes me realize how much I miss my horse. I love your paint.
    I would love to correspond on the regular basis if that is ok with you.

    my e-mail
    I would love to correspond also. here is my e-mail lcc2cec@yahoo.com. also I think we can get mail on this site I'm just not sure how because I always just come right to the discussion boards. Laura
  • green50
    green50 Member Posts: 312
    #13
    Bstrange said:

    Thank you
    Thank you for the welcome! 13,000 WOW. I thought mine was bad at 6,750. Keep up the great work.
    God Bless,
    Barbara

    Welcome Barb
    Welcome Barb, these ladies are wonderful to talk to. I have a very high CA125 count and they explained some woman do with little tumors and some have low count with big tumors and some have both small count and small tumors. But the dr. said go by the fact that the count goes down and stabilizes and don't go so much by the numbers. MIne is 18000 but tumors are small. I pray yours is gone. Again these ladies are great to talk to and a BIG support.
    Prayers and Hugs
    Sandy
  • Bstrange
    Bstrange Member Posts: 87
    #14
    green50 said:

    Welcome Barb
    Welcome Barb, these ladies are wonderful to talk to. I have a very high CA125 count and they explained some woman do with little tumors and some have low count with big tumors and some have both small count and small tumors. But the dr. said go by the fact that the count goes down and stabilizes and don't go so much by the numbers. MIne is 18000 but tumors are small. I pray yours is gone. Again these ladies are great to talk to and a BIG support.
    Prayers and Hugs
    Sandy

    Sandy
    Thank you for the information. You sound like a remarkable woman. Hang in there.
    Hugs,
    B
  • Lauracec
    Lauracec Member Posts: 101
    #15
    Bstrange said:

    Sandy
    Thank you for the information. You sound like a remarkable woman. Hang in there.
    Hugs,
    B

    speaking of numbers
    my ca 125 was only 47 before my big surgery and I had lots of cancer. then it went down to 8 for several months. I get it checked every three weeks b-4 my avastin or placebo infusion. the last two times it has been going up first it was 13 and now last time 21 I will get it checked again on the 2nd hopefully it will go down. anyway the number b-4 surgery might have to do with I wasn't in menopause yet or who knows. every one is different. God Bless all, Laura
  • kayandok
    kayandok Member Posts: 1,202 Member
    #16
    Welcome Barbara
    Welcome Barbara, and so glad you found this site. You will be amazed at the info and support here.
    I was dx OVCA sereous type 3C in June 2007. Having my first recurrence and finished my first cycle of gemzar/cisplatin.
    This board has been a great encouragement to me.

    Please come often tell you story.

    Hugs,
    Kathleen
  • Bstrange
    Bstrange Member Posts: 87
    #17
    kayandok said:

    Welcome Barbara
    Welcome Barbara, and so glad you found this site. You will be amazed at the info and support here.
    I was dx OVCA sereous type 3C in June 2007. Having my first recurrence and finished my first cycle of gemzar/cisplatin.
    This board has been a great encouragement to me.

    Please come often tell you story.

    Hugs,
    Kathleen

    Thank you
    Thank you for the message. I will pray for you also.
    Barbara
  • kris43
    kris43 Member Posts: 275
    #18
    Bstrange said:

    Thank you
    Thank you for the message. I will pray for you also.
    Barbara

    welcome
    Barbara - look how much encouragement you received in one short day. This site is amazing and a wonderful source of information as well. I don't know what I would have done without it.

    Sounds like your numbers are going the right direction and I'm glad you are on the same page as your doctor now. I always ask for copies of everything - you just never know when something will be lost or they tell you something when you thought you heard something else. Never hurts to ask questions and be direct.

    Good luck in your latest round of chemo and welcome to the board. Hugs!

    Kris
  • cubbybear
    cubbybear Member Posts: 5
    #19
    Hi Barbara. I have stage
    Hi Barbara. I have stage 111 ovarian cancer and have been in remission since 11/07 and would like to chat with you. My email address is cubbybear468@yahoo.com I look forward to chatting with you. It always helps to talk to someone going thru the same thing.
  • Timber
    Timber Member Posts: 5
    #20
    newbie
    Hi Barbara,
    My name is Kathy and I am new to this site also. I am stage 111c ovarian operated on April 07. I had 26 lymph nodes removed but 2 were cancerous. Had chemo for 6 months. Now I have lymphedema in my left leg which cannot be helped. I have been NED for over 1 year and now my Ca 125 is up from 6.2 to 24.9. I am scared also. My Dr, whom I trust, said wait 1 month and retake CA 125. Yikessss! I feel pretty anxious about this but I have to do it so I will. You are not alone, I thought I was until I found you guys. I'm glad to have you all to vent. Thanks, Kathy
  • LPack
    LPack Member Posts: 645
    #21
    welcome
    Welcome Barbara,

    This is a wonderful site of very encouraging ladies. My story is under my picture so I won't go into any details here. I should update it thought. Amazing what happens in a years time.

    I have been in remission or no evidence of cancer since November, Praise the Lord. He is my physician but my onc/gyn is a great bonus. I go this Thursday for a checkup. The first time it has not been a monthly. Been more like 3 months because of holidays and mission trip last week.

    In His Grip!
    Libby☺

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