New to Website/ 2 year SURVIVOR

curlyq1971
curlyq1971 Member Posts: 56
edited March 2014 in Ovarian Cancer #1
My name is Leslie, and I am a 2 year Survivor...I was diagnosed with OvaCa Stage 2 in August of 2005. I was 34 years old at the time, and I underwent a total hysterectomy as well as having my ovaries, fallopian tubes, cervix, omentum and 9 Lymph nodes removed, (the good news was that the disease had not spread), and ALL of the Cancer was removed. I had two tumors totally engulfing each ovary, one was the size of a basketball, and the other was the size of a soccer ball...and this is the real kicker, my CA125 at the time of surgery was 50,500...that number was the highest that my gyne/onc surgeon had ever seen. After surgery, I did 6 preventative chemo treatments, which contained taxol/carboplatin, I faired pretty well, I never got sick during treatment, only tired! I have been Cancer Free for over 2 years now and I am pretty excited about that, currently my CA125 is 13 and it has been 13 for quite awhile, so I am very Thankful for that. I go about my life and things have pretty much gotten back to normal and I am finding that I think about reoccurence less and less, it is only at the time of my follow-up visits do I really think about it and get scared, even though my prognosis is good. I feel truly blessed and try to make the most out of each and every day!! I would really like to hear from and get to know fellow OvaCa Survivors and develop a support system. I would also like to support and help women who are newly diagnosed, or who are going through treatment...I would be more than happy to answer any questions that you may have. Thanks for reading and Take Care!!
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Comments

  • aandj
    aandj Member Posts: 33
    Hi there Leslie, my name is Angela - I am also new to this site. I am 34 yrs old, and 3 months ago was diagnosed with OVCa Stage 1. I had a tumour on my one ovary that was not quite the size of a soccer ball, but came close! I had one initial surgery where that was removed, with the gynae thinking it was just a cyst, but soon discovered it was more, so a month later I had another surgery where I had the uterus, cervix, other ovary (which had tiny spots of tumour on it), falopian tubes and omentum removed. All other areas were clear, and the tumour was still encapsulated in the ovary. My CA 125 never read high at all. I am in the process of having chemo - carbo only. 2 down 4 doses to go. I have a bit of nausea, and mostly tiredness. I also seem to be suffering from constipation which is causing awful abdominal pain - but now that I know what it's about I am hoping I can prevent the constipation for the next dose. Its really great for me to hear someone so positive a couple of years down the line. I have to ask - do you have children? I am married, but we do not have children, and were not sure if we did want, but it is now so hard as the choice has been taken away from us! Most of the time I am fine, and positive, and working, but sometimes I get so down, and sad. I have a great supportive husband, who is really understanding, but it is good to find a place where there are people who are going through the same thing. Hope to chat again soon. PS - We live in South Africa, Cape Town...
  • mopar
    mopar Member Posts: 1,972 Member
    Welcome, Leslie! It is so good to hear from another survivor. We are all survivors here, and all have different experiences to share. But in many ways, we are all the same. That's why we can uplift eachother, share tips and suggestions, and mostly offer support, hugs and so much more.

    I was diagnosed in 2000 with Stage 1C. The mass was located on one ovary only, but it ruptured while being removed. I had everything removed, as you, 6 rounds of carbo/taxol. My CA125 was pretty stable until 2006 when it started to consistently climb. More surgery, a mass removed from the pelvic wall, more lymph nodes and appendix removed, 6 rounds of carbo/taxol later changed to carbo/taxotere because I had an allergic reaction to the taxol. My CA125 has been stable since, with the exception of a recent spike, which I believe is due to a dose of Boniva that I had taken. I'm continuing to monitor the blood work every month.

    I'm also very thankful that my OVCA was caught early. I had no symptoms whatsover - I was only going to have a uterine fibroid removed when they discovered the cancer. I have a wonderful doctor, a very wonderful husband, 3 daughters and a good support system. I'm also so grateful for this website, all the new friends I have made, and knowing that sometimes my experience can be helpful to someone else.

    I will send prayers and hugs your way for continued remission. Thank you for joining us - I'll look forward to future posts from you!

    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Hello Leslie, welcome to the board. It is so good to read you are cancer free and things are getting back to normal in your life. And what a great time for join the board ~ so Angela can see how great one does that is diagnosed early.

    God is good all the time...all the time God is good!

    Prayers n Hugs Bonnie
  • curlyq1971
    curlyq1971 Member Posts: 56
    aandj said:

    Hi there Leslie, my name is Angela - I am also new to this site. I am 34 yrs old, and 3 months ago was diagnosed with OVCa Stage 1. I had a tumour on my one ovary that was not quite the size of a soccer ball, but came close! I had one initial surgery where that was removed, with the gynae thinking it was just a cyst, but soon discovered it was more, so a month later I had another surgery where I had the uterus, cervix, other ovary (which had tiny spots of tumour on it), falopian tubes and omentum removed. All other areas were clear, and the tumour was still encapsulated in the ovary. My CA 125 never read high at all. I am in the process of having chemo - carbo only. 2 down 4 doses to go. I have a bit of nausea, and mostly tiredness. I also seem to be suffering from constipation which is causing awful abdominal pain - but now that I know what it's about I am hoping I can prevent the constipation for the next dose. Its really great for me to hear someone so positive a couple of years down the line. I have to ask - do you have children? I am married, but we do not have children, and were not sure if we did want, but it is now so hard as the choice has been taken away from us! Most of the time I am fine, and positive, and working, but sometimes I get so down, and sad. I have a great supportive husband, who is really understanding, but it is good to find a place where there are people who are going through the same thing. Hope to chat again soon. PS - We live in South Africa, Cape Town...

    Hello Angela,
    Yes I do have children, I had a son in 1996 but my husband and I had been trying for another baby and it never happened and now that choice was taken from me as well, however, we are in the process of adopting a little boy, whom we received in May of 2006 just 4 months after my last treatment, and he is truly the greatest thing that came out of my cancer experience....I went thru a period when I had to mourn the loss of being able to have children...however I don't miss having my menstrual cycle at all!!!! If you and your husband are interested in having children in the future, you should really consider adoption, there are plenty of children needing loving homes. It is completely understandable that you have times when you are down and sad, but please don't let cancer take over your life, you have so much to be THANKFUL for. Trust me, down the road it won't always be the most present thing on your mind, and you will get back to being "NORMAL", whatever normal is! I was also constipated during chemo treatments, and had to take stool softeners to help with that, which thankfully it helped alot!! I too have a very supportive, and understanding husband, and I can honestly say that he was and still is my ROCK!!!! If you have any other questions or concerns, I am here to help you. Take Care!!!!
  • curlyq1971
    curlyq1971 Member Posts: 56
    mopar said:

    Welcome, Leslie! It is so good to hear from another survivor. We are all survivors here, and all have different experiences to share. But in many ways, we are all the same. That's why we can uplift eachother, share tips and suggestions, and mostly offer support, hugs and so much more.

    I was diagnosed in 2000 with Stage 1C. The mass was located on one ovary only, but it ruptured while being removed. I had everything removed, as you, 6 rounds of carbo/taxol. My CA125 was pretty stable until 2006 when it started to consistently climb. More surgery, a mass removed from the pelvic wall, more lymph nodes and appendix removed, 6 rounds of carbo/taxol later changed to carbo/taxotere because I had an allergic reaction to the taxol. My CA125 has been stable since, with the exception of a recent spike, which I believe is due to a dose of Boniva that I had taken. I'm continuing to monitor the blood work every month.

    I'm also very thankful that my OVCA was caught early. I had no symptoms whatsover - I was only going to have a uterine fibroid removed when they discovered the cancer. I have a wonderful doctor, a very wonderful husband, 3 daughters and a good support system. I'm also so grateful for this website, all the new friends I have made, and knowing that sometimes my experience can be helpful to someone else.

    I will send prayers and hugs your way for continued remission. Thank you for joining us - I'll look forward to future posts from you!

    Monika

    Hi Monika,
    I would like to Thank-you for Welcoming me onto the website!!! When I was dx, I went to the doctor for my annual pap test, and because my periods had been messed up, and during the pelvic exam he questioned what he was feeling and ordered a ultra sound the next day which showed 2 huge masses, I was then scheduled to see my gyne 2 days later and he ordered the CT Scan and Blood tests, and then 2 days after that appointments I went and saw my gyne-onc surgeon who was in another state, he wasn't totally convinced that I had OvaCa, because of the CT Scan and my age, and having no family history, however the CA125 was showing different, anyway I was then scheduled for surgery a week later...it all moved very quickly and looking back on it now, it was like a whirlwind!!! I thank god every day for my doctor that questioned what he had felt during the pelvic exam. Looking back on it now, I did have symptoms of OvaCa but thought is was something totally different, I never thought it would be cancer. I am also sending prayers and hugs on your continued remission and keep us posted on your blood tests. It was so wonderful to see 3 replies to my original post, I can't wait for more. Take Care and I will be chatting with you soon!!!!
  • curlyq1971
    curlyq1971 Member Posts: 56
    BonnieR said:

    Hello Leslie, welcome to the board. It is so good to read you are cancer free and things are getting back to normal in your life. And what a great time for join the board ~ so Angela can see how great one does that is diagnosed early.

    God is good all the time...all the time God is good!

    Prayers n Hugs Bonnie

    Hello Bonnie,
    I wanted to Thank-you for Welcoming me onto this website and I truly appreciate all of your kind words. I have felt for a long time that I wanted to give something back and hopefully help someone that is newly dx, going thru chem, or a survivor, something that I wish I would have had during my dx, and then treatment. I am sending prayers and hugs your way and I will be chatting with you soon. Take Care!!!
  • curlee8661
    curlee8661 Member Posts: 56
    Hi Leslie,
    I'm glad you've found us! This is a great place to get (as well as give) support.

    Here's my bio: My name is Marianna. I'm 52, and was diagnosed last April at stage 2C. I had the usual hysterectomy, 6 doses of Taxol/Carboplatin, and then a second-look surgery varifying that there's no sign of cancer remaining. My hair is finally growing back, and I just returned to work a week ago after 9 months on disability. I was also starting to look into doing some sort of cancer related volunteer work as I'm feeling ready to move on to positive things. Just as I thought that my life was getting back on track though, a couple of days ago I found out that my mom, who's 80 years old, has beginning signs of leukemia. I believe that things happen for a reason, so I'm wondering if I had to go through this process myself, so that I will be better able to help her with what she'll be going through? I hope I'm up for the challange! Now I need to get educated about one more cancer. The women on this board have helped me so much in the past several months, so I thought what better place to look for answers than this site. But, unfortunately, the leukemia board is not nearly as well frequented as this one, so I'll have to go elsewhere for answers.

    It's good to hear that you're doing well after 2 years! We all worry about recurrance to some extent, but hearing positive outcomes gives us all more hope. It's very comforting to those of us stil in (or recently out of) treatment.

    Welcome aboard!
    Marianna
  • This comment has been removed by the Moderator
  • curlyq1971
    curlyq1971 Member Posts: 56
    unknown said:

    This comment has been removed by the Moderator

    Hi Nancy,
    Thank-you for welcoming me to the board, and I am very happy that when you read my post that it gave you hope, I want to be able to help and support fellow OvaCa survivors.

    If you have any questions or concerns, please don't hesitate to ask me. Talk to you soon!
    Take Care,
    Leslie
  • curlyq1971
    curlyq1971 Member Posts: 56

    Hi Leslie,
    I'm glad you've found us! This is a great place to get (as well as give) support.

    Here's my bio: My name is Marianna. I'm 52, and was diagnosed last April at stage 2C. I had the usual hysterectomy, 6 doses of Taxol/Carboplatin, and then a second-look surgery varifying that there's no sign of cancer remaining. My hair is finally growing back, and I just returned to work a week ago after 9 months on disability. I was also starting to look into doing some sort of cancer related volunteer work as I'm feeling ready to move on to positive things. Just as I thought that my life was getting back on track though, a couple of days ago I found out that my mom, who's 80 years old, has beginning signs of leukemia. I believe that things happen for a reason, so I'm wondering if I had to go through this process myself, so that I will be better able to help her with what she'll be going through? I hope I'm up for the challange! Now I need to get educated about one more cancer. The women on this board have helped me so much in the past several months, so I thought what better place to look for answers than this site. But, unfortunately, the leukemia board is not nearly as well frequented as this one, so I'll have to go elsewhere for answers.

    It's good to hear that you're doing well after 2 years! We all worry about recurrance to some extent, but hearing positive outcomes gives us all more hope. It's very comforting to those of us stil in (or recently out of) treatment.

    Welcome aboard!
    Marianna

    Hi Marianna,

    I am so sorry to hear about your Mom, but your right things happen for a reason, and I beleive that you are up for the challenge, we as survivors are strong human beings and I am positive that you will be able to help your Mom with all the upcoming challenges that she will have to face. Keep us updated on your Mom and how she is doing!

    Isn't is wonderful to have your hair growing back?! Beleive it or not, my hair came back in naturally curly, and before chemo my hair was as straight as a pin....never thought in a million years that it would come back curly, but I absolutely love it, I feel like a brand new woman!!! Although, during treatment I did not miss having to shave my legs or under my arms. I am glad that I found this website too, it is so nice to be able to share my story and have you share your stories with me, and to offer support and words of encouragement.

    My prayers and thoughts are with you and your Mom, and I hope to chat with you soon!!!
    Take Care,
    Leslie
  • floridajo
    floridajo Member Posts: 480
    Leslie,
    Welcome to the board,sorry I didn't greet you for a bit,I've been feeling a bit under the weather this week. I was dx.11/04 stage 3c. I was 46. I had two tumors about 8x10x6". Went throught the usual surgery, and 6 rounds of carbo/taxol. Then had a second look surgery after chemo was completed, and was found to still have more cancer,so then I went on Doxil6 rounds. That takes me to Jan 06. Had a nice remission of 13 months, and had my first recurrence Feb 07. Had 5 rounds of gemzar and had to stop because it put me into congestive heart failure. Took a 4 month break and began testing all over again to see if I was still in remission from June of 07. After 2 more months and lots of tests I was found to be having another recurrence and have just finished my first cycle of Topotecan, start the next cycle this Friday. Your ca-125 will be a valuable tool for you, as it was so high, that means it's very sensitive,as ca-125 have nothing to do with the amount of cancer in you. I'm not as lucky,so when my ca-125 shows any increase for a couple months,we know that another recurrence is on the horizon for me. I write this to you and our other newcomer Angela just to let you know, you can still have a good quality of life even with recurrences..for me it's treated as a chronic disease..it rears it's ungly head and I treat it with chemo,kinda like you would take antibiotics,for an infection or insulin for diabetes. Welcome ladies...you will find this board to truly be a life saver,it's full of so much love and support. I couldn't imagine going through the things I go through without the prayer warriors on this board. Sending white roses, with teal streamers to both of you ladies...(((hugz)))~~~Joanne
  • curlyq1971
    curlyq1971 Member Posts: 56
    floridajo said:

    Leslie,
    Welcome to the board,sorry I didn't greet you for a bit,I've been feeling a bit under the weather this week. I was dx.11/04 stage 3c. I was 46. I had two tumors about 8x10x6". Went throught the usual surgery, and 6 rounds of carbo/taxol. Then had a second look surgery after chemo was completed, and was found to still have more cancer,so then I went on Doxil6 rounds. That takes me to Jan 06. Had a nice remission of 13 months, and had my first recurrence Feb 07. Had 5 rounds of gemzar and had to stop because it put me into congestive heart failure. Took a 4 month break and began testing all over again to see if I was still in remission from June of 07. After 2 more months and lots of tests I was found to be having another recurrence and have just finished my first cycle of Topotecan, start the next cycle this Friday. Your ca-125 will be a valuable tool for you, as it was so high, that means it's very sensitive,as ca-125 have nothing to do with the amount of cancer in you. I'm not as lucky,so when my ca-125 shows any increase for a couple months,we know that another recurrence is on the horizon for me. I write this to you and our other newcomer Angela just to let you know, you can still have a good quality of life even with recurrences..for me it's treated as a chronic disease..it rears it's ungly head and I treat it with chemo,kinda like you would take antibiotics,for an infection or insulin for diabetes. Welcome ladies...you will find this board to truly be a life saver,it's full of so much love and support. I couldn't imagine going through the things I go through without the prayer warriors on this board. Sending white roses, with teal streamers to both of you ladies...(((hugz)))~~~Joanne

    Hello Joanne,
    Thank-you for welcoming me aboard!!! It was nice to hear from you and to read your story, you sound so upbeat and positive!!! I admire your courage for all that you have been through, and I like you believe you can live a "NORMAL" life even with reoccurences, with everything that I have read, Ovarian Cancer is not a death sentence, and it is treatable and manageable. I just wish that they had more commercials on TV about OvaCa, hopefully helping women become more aware of the early symptoms.
    I am very happy to be a member of this board and I hope to form some long lasting friendships, and offer my support to anyone who needs it. Take Care and I hope to chat with you soon!!!
    Leslie
  • curlee8661
    curlee8661 Member Posts: 56

    Hi Marianna,

    I am so sorry to hear about your Mom, but your right things happen for a reason, and I beleive that you are up for the challenge, we as survivors are strong human beings and I am positive that you will be able to help your Mom with all the upcoming challenges that she will have to face. Keep us updated on your Mom and how she is doing!

    Isn't is wonderful to have your hair growing back?! Beleive it or not, my hair came back in naturally curly, and before chemo my hair was as straight as a pin....never thought in a million years that it would come back curly, but I absolutely love it, I feel like a brand new woman!!! Although, during treatment I did not miss having to shave my legs or under my arms. I am glad that I found this website too, it is so nice to be able to share my story and have you share your stories with me, and to offer support and words of encouragement.

    My prayers and thoughts are with you and your Mom, and I hope to chat with you soon!!!
    Take Care,
    Leslie

    Leslie,
    Apparently, hair texture changes are not all that unusual. I've heard a long time ago aboout previously straight hair sometimes coming back curly, but of course I never thought it would happen to me since that's something I always admired on others. Well, it DID happen to me too! What used to be very fine and straight hair is now thicker and curly. At first, my new hair seemed to have a mind of it's own, and I thought it might become more trouble than I bargained for, but I'm getting a hang of styling it and actually liking it a lot. It's almost as easy to take care of as my bald head was during chemo. Oh, YES! The not having to shave part was my favorite benefit of having chemo as well!!! Just goes to show, there's always a silver lining if you look hard enough! LOL

    I do feel that I'm a much stronger person since having gone through cancer diagnosis & treatment. The news of my Mom's illness didn't rattle me nearly as much as I know it would've otherwise. Now I can look at the time we have left together as an apportunity to mend some fences, to finally forgive things in the past, and just make the most of it loving each other instead of fighting.

    Thanks for your kind words!
    (((HUGS)))
    ~Marianna~
  • Steph65723
    Steph65723 Member Posts: 12
    aandj said:

    Hi there Leslie, my name is Angela - I am also new to this site. I am 34 yrs old, and 3 months ago was diagnosed with OVCa Stage 1. I had a tumour on my one ovary that was not quite the size of a soccer ball, but came close! I had one initial surgery where that was removed, with the gynae thinking it was just a cyst, but soon discovered it was more, so a month later I had another surgery where I had the uterus, cervix, other ovary (which had tiny spots of tumour on it), falopian tubes and omentum removed. All other areas were clear, and the tumour was still encapsulated in the ovary. My CA 125 never read high at all. I am in the process of having chemo - carbo only. 2 down 4 doses to go. I have a bit of nausea, and mostly tiredness. I also seem to be suffering from constipation which is causing awful abdominal pain - but now that I know what it's about I am hoping I can prevent the constipation for the next dose. Its really great for me to hear someone so positive a couple of years down the line. I have to ask - do you have children? I am married, but we do not have children, and were not sure if we did want, but it is now so hard as the choice has been taken away from us! Most of the time I am fine, and positive, and working, but sometimes I get so down, and sad. I have a great supportive husband, who is really understanding, but it is good to find a place where there are people who are going through the same thing. Hope to chat again soon. PS - We live in South Africa, Cape Town...

    Hey Angela, my name is Steph. I will be 34 in about 2 and a 1/2 weeks. I'm a 2 year survivor of OVCA Stage 1. I had a tumour on one of my ovaries that was the size of a volleyball, weighing in at 4lbs. Initially, my gyn/onc surgeon thought is was a benign tumour. When I had the surgery everything looked good, they biopsied the tumour while I was on the operating table to make sure it wasn't cancerous. My surgeon had permission to give me a hysterectomy if it was cancerous. I went for my 2 week check up after the surgery and he informed me that he had some bad news. He had sent my tumour to Boston where they did some more tests and found cancer in the center of the tumour. As soon as I recovered from the first surgery, I underwent another. I had a hysterectomy and they also took 26 tissue samples from all over my body to biopsy. The only other place they found cancer in was my cervix, which they had removed during my hysterectomy. I had 6 chemo treatments. I never experienced nausea, but was always extremely tired afterwards and never had an appetite after. I to am married to a wonderfully understanding man. He has 2 children from a previous marriage, but the two of us do not have children together. I have always dreamed of having children of my own. In the beginning it was extremely difficult and sometimes still is. Some would say I am very lucky because I have 2 step-children and I readily agree. I am fortunate to have 2 wonderful step-kids who I love with all my heart, but it's not the same as having your own. For a while I felt guilty because here I was with these 2 wonderful kids in my life but still I longed for more.
    However, I have learned I have nothing to feel guilty about. The turning point for me was when I realized it was okay for me to mourn the loss of having my own children. I sometimes still get down about it, but I don't let it keep me there. Just know there are people who know and understand, who have been there.

    My thoughts and prayers are with you.
    Steph
  • curlyq1971
    curlyq1971 Member Posts: 56

    Leslie,
    Apparently, hair texture changes are not all that unusual. I've heard a long time ago aboout previously straight hair sometimes coming back curly, but of course I never thought it would happen to me since that's something I always admired on others. Well, it DID happen to me too! What used to be very fine and straight hair is now thicker and curly. At first, my new hair seemed to have a mind of it's own, and I thought it might become more trouble than I bargained for, but I'm getting a hang of styling it and actually liking it a lot. It's almost as easy to take care of as my bald head was during chemo. Oh, YES! The not having to shave part was my favorite benefit of having chemo as well!!! Just goes to show, there's always a silver lining if you look hard enough! LOL

    I do feel that I'm a much stronger person since having gone through cancer diagnosis & treatment. The news of my Mom's illness didn't rattle me nearly as much as I know it would've otherwise. Now I can look at the time we have left together as an apportunity to mend some fences, to finally forgive things in the past, and just make the most of it loving each other instead of fighting.

    Thanks for your kind words!
    (((HUGS)))
    ~Marianna~

    Marianna,
    I know what you mean about "Curly Hair" having a mind of its own, I remember when it was coming back in, and I realized that it was Curly I thought what in the world am I going to do with this...Before OvaCa, I used to wear my hair short, and after treatment I was really set on returning to that hair-do, well needless to say now that my hair is curly that was not going to happen, I decided to grow it out long and I absolutely love it, to tell you the truth I enjoyed being bald, it was so easy to take care of, all I had to do was wash my head and it was done....I never wore a wig or bandana, I did wear a hat because it was winter when I was bald, but other than that, I went au natural...my mother-in-law went thru breast cancer treatment right before I was dx, and her hair came back in the same as when it left, and she hates it cuz my came in thicker and curly...it is weird how it changes some and not others...

    I beleive that you are a much stronger person having faced Cancer, and I know that you will be able to help your Mom through whatever happens, and your right you need to enjoy eachother and leave the past in the past!!!

    I am so happy that I found this website, and I am happy that I am getting a chance to meet all of you and share stories, and support eachother. I am looking forward to talking with you some more!

    Sending a bunch of hugs your way,
    Leslie
  • aandj
    aandj Member Posts: 33

    Hey Angela, my name is Steph. I will be 34 in about 2 and a 1/2 weeks. I'm a 2 year survivor of OVCA Stage 1. I had a tumour on one of my ovaries that was the size of a volleyball, weighing in at 4lbs. Initially, my gyn/onc surgeon thought is was a benign tumour. When I had the surgery everything looked good, they biopsied the tumour while I was on the operating table to make sure it wasn't cancerous. My surgeon had permission to give me a hysterectomy if it was cancerous. I went for my 2 week check up after the surgery and he informed me that he had some bad news. He had sent my tumour to Boston where they did some more tests and found cancer in the center of the tumour. As soon as I recovered from the first surgery, I underwent another. I had a hysterectomy and they also took 26 tissue samples from all over my body to biopsy. The only other place they found cancer in was my cervix, which they had removed during my hysterectomy. I had 6 chemo treatments. I never experienced nausea, but was always extremely tired afterwards and never had an appetite after. I to am married to a wonderfully understanding man. He has 2 children from a previous marriage, but the two of us do not have children together. I have always dreamed of having children of my own. In the beginning it was extremely difficult and sometimes still is. Some would say I am very lucky because I have 2 step-children and I readily agree. I am fortunate to have 2 wonderful step-kids who I love with all my heart, but it's not the same as having your own. For a while I felt guilty because here I was with these 2 wonderful kids in my life but still I longed for more.
    However, I have learned I have nothing to feel guilty about. The turning point for me was when I realized it was okay for me to mourn the loss of having my own children. I sometimes still get down about it, but I don't let it keep me there. Just know there are people who know and understand, who have been there.

    My thoughts and prayers are with you.
    Steph

    Hi there Steph. It's really amazing to read a story that is so much like mine - similar age, 2 surgeries, no natural kids... it made me cry as I was reading it... I have to ask you, and anyone eles - Has anyone only had Carbo, not combined with another drug? I am only on Carbo, not a combo of drugs. I have been told that it is unlikely to lose my hair... what is the general feeling about that? I dont mind losing my hair, but I dont know when to expect it to happen - I have had 2 doses (3rd one will be this week....)
  • Acosta1027
    Acosta1027 Member Posts: 3
    High ca 125
    Hi! My name is JoAnne and I am 4 year survivor. I am in treatment for my 3rd recurrence and my numbers started rising a couple of months ago from 120 to 240 to 6600 to current 19,900! This is the highest I've seen until I saw your post. Did your dr. ever explain why this number got so high? Since you were stage 2, obviously there are others who had more cancer with lower numbers. How are you doing now? Are you still cancer free? I need some hope here as I'm very freaked out by numbers. Had MRI last night and spoke with surgeon regarding liver resection. My recurrences have both been in the same areas of liver. I appreciate anything you can share with me!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    High ca 125
    Hi! My name is JoAnne and I am 4 year survivor. I am in treatment for my 3rd recurrence and my numbers started rising a couple of months ago from 120 to 240 to 6600 to current 19,900! This is the highest I've seen until I saw your post. Did your dr. ever explain why this number got so high? Since you were stage 2, obviously there are others who had more cancer with lower numbers. How are you doing now? Are you still cancer free? I need some hope here as I'm very freaked out by numbers. Had MRI last night and spoke with surgeon regarding liver resection. My recurrences have both been in the same areas of liver. I appreciate anything you can share with me!

    JoAnne....this thread is
    JoAnne....this thread is from Jan of 2008 - 3 1/2 years ago. I don't think you are going to get a response from the original poster. I've been around since Sept, 2009 and never heard of her.

    CA125 is not an indication of how serious your cancer is, or how far it has spread, or what stage you might be. Liver mets tend to produce very high CA125 readings. I don't know why that is, but I know it's true. Linda P can shed some light on that for you, I'm sure.

    Welcome to the board.

    Carlene
  • upsofloating
    upsofloating Member Posts: 466 Member

    JoAnne....this thread is
    JoAnne....this thread is from Jan of 2008 - 3 1/2 years ago. I don't think you are going to get a response from the original poster. I've been around since Sept, 2009 and never heard of her.

    CA125 is not an indication of how serious your cancer is, or how far it has spread, or what stage you might be. Liver mets tend to produce very high CA125 readings. I don't know why that is, but I know it's true. Linda P can shed some light on that for you, I'm sure.

    Welcome to the board.

    Carlene

    Hi Carlene, Leslie actually
    Hi Carlene, Leslie actually commented on your post re Nancy with the Angels. Her profile does note her as being a "5-year survivor" -- great to know!
    Annie
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    Hi Carlene, Leslie actually
    Hi Carlene, Leslie actually commented on your post re Nancy with the Angels. Her profile does note her as being a "5-year survivor" -- great to know!
    Annie

    Annie....one of us, either
    Annie....one of us, either myself or my computer, has lost our mind. The first post I saw in the thread was from someone called "AandJ." After I refreshed the page, I saw that it was started by Leslie.

    It's late and I had 2 strawberry daquiris with dinner. That might explain it, as well. Thank you for keeping me right-side-up.

    Carlene

    PS....how are you doing, Leslie?