tough day

kimberly sue 63
kimberly sue 63 Member Posts: 421 Member
in Ovarian Cancer #1

I saw my surgeon today. It was 2 weeks from my surgery. It was great to get the staples out. Just a review, first diagnosed 3/2012 optimally debulked and did chemo dense treatment which ended October 2012. Low CA125 for 17 months, then started to rise until abnormal level in April 2014. Second surgery due to tumors found on CT PET scan. Second surgery May 13, 2014. Unable to ultimately debulk this time. Also had to repair bowel obstruction.

Why is it, even though I know about ovarian cancer and all of its risks, difficulties treating ect.... But still today was tough. He was not sure he could get me back into full remisssion again. My CA125 although elevated for me is still not representative of the disease he found with surgery. He was unable to ultimately debulk. Thus now I have to hope on the chemo reducing my tumors left. This was tough to hear today.

Hoping you all have some support to cheer me up.

I should start chemo within 10-14 days.

KIM

Comments

  • scatsm
    scatsm Member Posts: 296 Member
    #2
    don't give up hope of NED!

    Kim,

    For most of us who have recurred, it's the chemo we depend on to finish up the job. Even with optimal debulking, there is such  a high rate od recurrence for us all. So many women on this board have lived with ovarian recurrences and keep on going!

    I'm planning to be one of them and I'm betting so are you!

    Every time there is bad news, I get down for a while, but that usually lifts once there's a plan.

    What were your ca125 numbers....are they a good indicator of disease for you? My original ovca ca125 was 2200, but my recurrence only got to 44 when I had a ct scan and there were nodules. After the first chemo it went to 12, but now, after pneumonia following the second round, it's back up to 22. Onc says it's the pneumonia, so we'll see in 3 weeks what happens. My gemzar treatment was canceled for this week due to low platelets and hemoglobin  (8.2). Getting transfused on friday so that should help...it's a rough road but I have my eyes on the horizon...

    I hope you'll get to that place too!

    all the best,

    Susan

     

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #3
    scatsm said:

    don't give up hope of NED!

    Kim,

    For most of us who have recurred, it's the chemo we depend on to finish up the job. Even with optimal debulking, there is such  a high rate od recurrence for us all. So many women on this board have lived with ovarian recurrences and keep on going!

    I'm planning to be one of them and I'm betting so are you!

    Every time there is bad news, I get down for a while, but that usually lifts once there's a plan.

    What were your ca125 numbers....are they a good indicator of disease for you? My original ovca ca125 was 2200, but my recurrence only got to 44 when I had a ct scan and there were nodules. After the first chemo it went to 12, but now, after pneumonia following the second round, it's back up to 22. Onc says it's the pneumonia, so we'll see in 3 weeks what happens. My gemzar treatment was canceled for this week due to low platelets and hemoglobin  (8.2). Getting transfused on friday so that should help...it's a rough road but I have my eyes on the horizon...

    I hope you'll get to that place too!

    all the best,

    Susan

     

    Hi Kim

    I think it's very possible for you to go back into full remission again, especially since you went almost a year-and-a-half before you recurred.  Doctors usually are very careful in how they convey information to their patients.  However, in carefully choosing their words, they sometimes come off sounding very pessimistic, which is really not how the patient's situation should be viewed.

    Sending lots of positive thoughts and prayers to you and Susan that your chemos kick your cancers' butts to the curb for good!

    Warm hugs,

    Kelly

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #4
    scatsm said:

    don't give up hope of NED!

    Kim,

    For most of us who have recurred, it's the chemo we depend on to finish up the job. Even with optimal debulking, there is such  a high rate od recurrence for us all. So many women on this board have lived with ovarian recurrences and keep on going!

    I'm planning to be one of them and I'm betting so are you!

    Every time there is bad news, I get down for a while, but that usually lifts once there's a plan.

    What were your ca125 numbers....are they a good indicator of disease for you? My original ovca ca125 was 2200, but my recurrence only got to 44 when I had a ct scan and there were nodules. After the first chemo it went to 12, but now, after pneumonia following the second round, it's back up to 22. Onc says it's the pneumonia, so we'll see in 3 weeks what happens. My gemzar treatment was canceled for this week due to low platelets and hemoglobin  (8.2). Getting transfused on friday so that should help...it's a rough road but I have my eyes on the horizon...

    I hope you'll get to that place too!

    all the best,

    Susan

     

    Day of second surgery my

    Day of second surgery my CA125 was 94...thenhighest Ive ever been even with initiL SURGERY IN 2012. sO THEY DID RISE AND DISEASE DID FINALLYNREARMIT UGLY head....but theynare not like others who have big numbers. Kim

     

    Yes I hope for remisssion.....!!

     

    Your strength in yoiur current fight gives me hope. KIM

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #5
    lovesanimals said:

    Hi Kim

    I think it's very possible for you to go back into full remission again, especially since you went almost a year-and-a-half before you recurred.  Doctors usually are very careful in how they convey information to their patients.  However, in carefully choosing their words, they sometimes come off sounding very pessimistic, which is really not how the patient's situation should be viewed.

    Sending lots of positive thoughts and prayers to you and Susan that your chemos kick your cancers' butts to the curb for good!

    Warm hugs,

    Kelly

    I feel the warm hugs and

    I feel the warm hugs and thoughts. I needed you ladies today. Thank you!!! Kim

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #6
    Kim

    I have been on chemo pretty much the whole time since being  suboptimally  debulked in June of 2010. I have a pretty good quality of life, the first week after chemo I am not at my best but then I usually have three great weeks.

    Dont lose hope, there is great life even if you need chemo. Because I believe I am going to do well that is half the battle. Remission was never a realistic goal for me, so chemo is my lifeline, I embrace it and work between treatments to get strong, nothing crazy just trying to eat better and getting plenty of rest to strengthen my immune system.

    There are a lot of women who have not made it as far as I have and there are many more who have surpassed me. I am determined to get as far as I can for as long as I can enjoy my family and friends. Every day is a gift. Is this disease going to kill me? Most likely but not today, not tommorow, and hopefully any time in the near future.

    So put on your big girl panties and get ready to beat this monster. The fact that you had a remission at first is a very good predictor on how you will do in the future. Rest up and be good to yourself!

     

    Colleen

  • wholfmeister
    wholfmeister Member Posts: 315
    #7

    I have been on chemo since my diagnosis in March 2012.  Supposedly, I was optimally debulked, but I don't believe I was ever in remission.  So, I don't know if you can say I am recurring, but the dang cancer is still there, first in two nodes, now in four...

    But I have to agree with Colleen.  In spite of continuous chemo, my quality of life is fine.  I do pretty much what I want to do.  (I go to work everyday, because I have to, even though there are tons of things I'd rather do!!)  I'm not quite as wild as Alexandra, but I try to enjoy life.  Everyday is so precious.  If my doctor told me I'd have to be on chemo the rest of my life, that would be OK.  There are women on this board who have tolerated it a lot longer than me, and they are my inspiration.  There are women who are sicker than poor puppies because of their chemo, and they are my inspiration, too. 

    What I am saying is, don't be discouraged.  Take each day and embrace whatever there is good about it.  You have been through so much with two huge surgeries.  You are still recovering.  But soon, very soon, you need to put on your boxing gloves and get back in the fight.  We all need you fighting with us!

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #8
    Cafewoman53 said:

    Kim

    I have been on chemo pretty much the whole time since being  suboptimally  debulked in June of 2010. I have a pretty good quality of life, the first week after chemo I am not at my best but then I usually have three great weeks.

    Dont lose hope, there is great life even if you need chemo. Because I believe I am going to do well that is half the battle. Remission was never a realistic goal for me, so chemo is my lifeline, I embrace it and work between treatments to get strong, nothing crazy just trying to eat better and getting plenty of rest to strengthen my immune system.

    There are a lot of women who have not made it as far as I have and there are many more who have surpassed me. I am determined to get as far as I can for as long as I can enjoy my family and friends. Every day is a gift. Is this disease going to kill me? Most likely but not today, not tommorow, and hopefully any time in the near future.

    So put on your big girl panties and get ready to beat this monster. The fact that you had a remission at first is a very good predictor on how you will do in the future. Rest up and be good to yourself!

     

    Colleen

    Thanks Collenen. You are an

    Thanks Collenen. You are an inspiration. Kim

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #9
    wholfmeister said:

    I have been on chemo since my diagnosis in March 2012.  Supposedly, I was optimally debulked, but I don't believe I was ever in remission.  So, I don't know if you can say I am recurring, but the dang cancer is still there, first in two nodes, now in four...

    But I have to agree with Colleen.  In spite of continuous chemo, my quality of life is fine.  I do pretty much what I want to do.  (I go to work everyday, because I have to, even though there are tons of things I'd rather do!!)  I'm not quite as wild as Alexandra, but I try to enjoy life.  Everyday is so precious.  If my doctor told me I'd have to be on chemo the rest of my life, that would be OK.  There are women on this board who have tolerated it a lot longer than me, and they are my inspiration.  There are women who are sicker than poor puppies because of their chemo, and they are my inspiration, too. 

    What I am saying is, don't be discouraged.  Take each day and embrace whatever there is good about it.  You have been through so much with two huge surgeries.  You are still recovering.  But soon, very soon, you need to put on your boxing gloves and get back in the fight.  We all need you fighting with us!

    Thank you. Im

    Thank you. Im feelingmstrongermeverydaynand all of you are helpful it getting me stronger!! Kim

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #10
    Cafewoman53 said:

    Kim

    I have been on chemo pretty much the whole time since being  suboptimally  debulked in June of 2010. I have a pretty good quality of life, the first week after chemo I am not at my best but then I usually have three great weeks.

    Dont lose hope, there is great life even if you need chemo. Because I believe I am going to do well that is half the battle. Remission was never a realistic goal for me, so chemo is my lifeline, I embrace it and work between treatments to get strong, nothing crazy just trying to eat better and getting plenty of rest to strengthen my immune system.

    There are a lot of women who have not made it as far as I have and there are many more who have surpassed me. I am determined to get as far as I can for as long as I can enjoy my family and friends. Every day is a gift. Is this disease going to kill me? Most likely but not today, not tommorow, and hopefully any time in the near future.

    So put on your big girl panties and get ready to beat this monster. The fact that you had a remission at first is a very good predictor on how you will do in the future. Rest up and be good to yourself!

     

    Colleen

    You're absolutely correct, Colleen!

     

    You amaze me! I sometimes allow myself to travel down that bumpy, negative road of self pity. I admire your strength, your joy in living and your resilience.  I agree that each day is a gift and we must be good to ourselves. I have stage 3a uterine papillary serous carcinoma, a rare grade 3 cancer most similar to ovarian cancer and treated the same way. I finished chemo in March and am currently NED.  I want to face each day like I once did, that is, without being fearful of the future. When I read encouraging post like yours, I feel stronger and more in charge of my life. Thank you for that!

    Best wishes to you, Cathy

  • seatown
    seatown Member Posts: 261 Member
    #11
    kimberly sue 63 said:

    Thank you. Im

    Thank you. Im feelingmstrongermeverydaynand all of you are helpful it getting me stronger!! Kim

    Why not remission?

    I agree with the earlier comments--especially since you seemed to go so long with a low CA125 number, why would your doc say he doesn't know about remission for you? I love what my oncologist once said to me: "Some people are in remission for years, so why not you?" Why not me, indeed--and you? And when I worried about what would happen if I didn't respond to a new round of chemo, he said, "Well, we have lots of other drugs to try."

    Another personal note: A year or so ago when I had surgery, my gyn/onc surgeon said no visible cancer after surgery. But soon he had to tell me that upon microscopic exam 3 of 6 biopsies were positive for cancer. "So I guess I know what I'll die from," I said. No, no, no, he replied. "You shouldn't think that way when you still have so many treatment options."

    I too have been on chemo almost constantly since my diagnosis in July 2012 but have generally have a good quality of life. In fact my husband & I just returned from a rigorous 2 weeks in Europe earlier this month. My CA125 was nearly 3,000 on diagnosis and has been in the normal range for only a few months since diagnosis. It was at the top of the normal range in Dec 2013 when I was encouraged to take a 3-month "chemo holiday." During that time my CA125 rose to over 300; but now, after 3 Carboplatin infusions, it's just 74 & I hope for a normal CA125 next time in light of the rate at which it's decreasing. I'm lucky to have had no recent cancer symptoms clinically.

    I hope you & your doc find the magic bullet for you! Best wishes for a speedy recovery from your surgery.

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #12
    seatown said:

    Why not remission?

    I agree with the earlier comments--especially since you seemed to go so long with a low CA125 number, why would your doc say he doesn't know about remission for you? I love what my oncologist once said to me: "Some people are in remission for years, so why not you?" Why not me, indeed--and you? And when I worried about what would happen if I didn't respond to a new round of chemo, he said, "Well, we have lots of other drugs to try."

    Another personal note: A year or so ago when I had surgery, my gyn/onc surgeon said no visible cancer after surgery. But soon he had to tell me that upon microscopic exam 3 of 6 biopsies were positive for cancer. "So I guess I know what I'll die from," I said. No, no, no, he replied. "You shouldn't think that way when you still have so many treatment options."

    I too have been on chemo almost constantly since my diagnosis in July 2012 but have generally have a good quality of life. In fact my husband & I just returned from a rigorous 2 weeks in Europe earlier this month. My CA125 was nearly 3,000 on diagnosis and has been in the normal range for only a few months since diagnosis. It was at the top of the normal range in Dec 2013 when I was encouraged to take a 3-month "chemo holiday." During that time my CA125 rose to over 300; but now, after 3 Carboplatin infusions, it's just 74 & I hope for a normal CA125 next time in light of the rate at which it's decreasing. I'm lucky to have had no recent cancer symptoms clinically.

    I hope you & your doc find the magic bullet for you! Best wishes for a speedy recovery from your surgery.

    All of you are so

    All of you are so encouraging. I needed that. I am feeling better everyday and I am emotionally healing from the trauma of reocurrance and 2nd surgery. Ive started to do some easy meditation and that is helping.

    Thanks to all of you. Kim

     

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