A little confused

Joyjoy515
Joyjoy515 Member Posts: 6

Hello all,

I am new to this forum and wanted to know reach out to those who have been dealing with this and know a little more. My mother is 60 years old diagnosed with Stage IIIC Ovarian Cancer. Prior to surgery her CA125 was 70.6, after surgeryon 6/14/13 she was down to 45.5 and then yesterday when they checked again before chemo she was at 40.1. She had her first round of treatment yesterday which was 3 hours of taxol and 1 hour of carboplatin. We are not able to discuss the initial PetScan results until 7/10/13 when we go back for the second round of chemo and her follow up. I guess my question is her CA125 seems to continue to drop, that is a good thing right? What happens after she gets in the normal range? Will they declare her in remission? Does she stop chemo? Just wondered if anyone could give me a little more info.

She was diagnosed in March/2013. She is definitely a fighter and is ready to beat this disease.

Thanks all!

Joyce

Comments

  • lulu1010
    lulu1010 Member Posts: 367
    Joyce

    Glad you found this site. I am a lot like your mom. I am 60 and was diagnosed  3c in 2010.  Let me say althoght I am starting on chemo for the third time I have lived well. Traveled to Hawaii, Florida a couple times, Arizona and South Carolina several times.

    Yes it is good that her number goes down but  you want that chemo to kill every cell it can find. Even though it usually recurs there are many who have not even had a recurrance or maybe just a couple. And of course there are those who are in constant treatment but still enjoy life and family.

    I wish you both the best and if you have questions or just want to vent there is lots of go ladies who will share their knowledge and feelings with you.

     

     

     

     

  • Joyjoy515
    Joyjoy515 Member Posts: 6
    lulu1010 said:

    Joyce

    Glad you found this site. I am a lot like your mom. I am 60 and was diagnosed  3c in 2010.  Let me say althoght I am starting on chemo for the third time I have lived well. Traveled to Hawaii, Florida a couple times, Arizona and South Carolina several times.

    Yes it is good that her number goes down but  you want that chemo to kill every cell it can find. Even though it usually recurs there are many who have not even had a recurrance or maybe just a couple. And of course there are those who are in constant treatment but still enjoy life and family.

    I wish you both the best and if you have questions or just want to vent there is lots of go ladies who will share their knowledge and feelings with you.

     

     

     

     

    Thank you

    Thank you so much! I am grateful for finding this site!! I am hoping she does well. She had her first treatment and came home as if nothing happened. I am amazed.

    I wish you the best as well and pray for healing in everyone's lives affected by this disease.

     

  • kikz
    kikz Member Posts: 1,345 Member
    Glad you found us.

    I was 62 when diagnosed three years ago.  My initial CA 125 was 6900 and increased to 9000 before pre-surgery chemo.  After 3 rounds chemo it was 1600, dropping to 13 after surgery.  I had 8 more infusions and CA 125 settled at around 7 for a while.  I had 18 months remission before it starting to climb and thanks to estrogen blockers was able to avoid chemo for an additional 13 months.  I am in treatment now and the chemo seems to be working.

    It is very frightening to find out one has this particular disease.  I was convinced I would die in a few months.  That is not the case.  Some women don't recur and many continue to live full lives through several recurrences.  Life is changed forever but it doesn't mean your mom cannot have a good life.  It's just different.

    I was declared in remission once my CA 125 was low and a CT scan showed no evidence of disease.  I am looking forward to hearing that again.

     

    Welcome and my best wishes to your mom.

    Karen

  • scatsm
    scatsm Member Posts: 296 Member
    welcome to this forum!

    I was diagnosed at age 60 with stage 3c ov ca. The cancer was everywhere in my abdomen so I had 4 rounds of carbo/taxol followed by surgery, then another 4 rounds of chemo. My initial CA125 was 1800, then it went up to 2200. By the time I restarted chemo after surgery it was down, down, down to 4 where it has stayed. I asked my gyn/onc after the 6th chemo whether I could stop since I was "technically" in remission, but he felt it was safer to do all 8 rounds of chemo. I know every doc is a bit different in his/her approach, but I felt comfortable in completing the protocol. I have been NED since March 2011. It was a very rough time, but I got through it, as will your mom. I'm feeling great now and so grateful to be NED. By the way, the CA125 is a bit of a mixed bag. It is not considered fail proof, so I still have quarterly pelvic exams with my gyn/onc.

    Please come back often. there are so many wise women here.

    Susan

     

  • 123Miley
    123Miley Member Posts: 94
    So glad your Mom is responding well to treatment!

    I was diagnosed at Stage 3C 6 years ago - and although I am not "cured" I am still here and living life!  

    After initial diagnosis I think usually they will complete a prescribed number of treatments - even if tumor marker is at or below normal.  Then they will keep a close eye on for any evidence of recurrence - indicated by scans, how she feels and of course the tumor marker.  It was nearly 4 years before my first recurrence. After I finished initial treatment I went every month then gradually worked up to 3 months in between checkups.  

    There are ladies who go through surgery and treatment and enjoy years of symptom free, drug free good health.  But unfortunately in a lot of cases this is a difficult cancer to completely erradicate.  The good news is if it does come back there are also a lot of good drugs out there that can help manage the disease, keep it in check, and allow us to lead a pretty normal life.  

    It is a forever life changing thing but it is NOT the end of the world either.  There is life after and WITH cancer.    

    Good luck to you and your Mom!  This is a great place to come and be reminded that we are not alone!

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    123Miley said:

    So glad your Mom is responding well to treatment!

    I was diagnosed at Stage 3C 6 years ago - and although I am not "cured" I am still here and living life!  

    After initial diagnosis I think usually they will complete a prescribed number of treatments - even if tumor marker is at or below normal.  Then they will keep a close eye on for any evidence of recurrence - indicated by scans, how she feels and of course the tumor marker.  It was nearly 4 years before my first recurrence. After I finished initial treatment I went every month then gradually worked up to 3 months in between checkups.  

    There are ladies who go through surgery and treatment and enjoy years of symptom free, drug free good health.  But unfortunately in a lot of cases this is a difficult cancer to completely erradicate.  The good news is if it does come back there are also a lot of good drugs out there that can help manage the disease, keep it in check, and allow us to lead a pretty normal life.  

    It is a forever life changing thing but it is NOT the end of the world either.  There is life after and WITH cancer.    

    Good luck to you and your Mom!  This is a great place to come and be reminded that we are not alone!

    Hi Joyce

    Your mom has every reason to be hopeful about the future.  I have a friend who is a 10-year (and counting) stage 3C ovarian cancer survivor.  Like Miley, she is not "cured" and has had her share of chemo over the last 10 years; however, that has not stopped her from enjoying life to the fullest.  She and her husband love to travel.  In the last 10 years, I think they've averaged about four trips a year, many abroad.  She does all kinds of things closer to home too and enjoys time with family and friends.

    That's a good sign that your mom's CA 125 is coming down.  As the other ladies have said, your mom's oncologist will likely have her finish all of her sessions of chemo, even/when her CA 125 continues to drop to ensure that any microscopic-sized cancer cells are zapped, as long as she can tolerate the chemo.

    Come back often to let us know how she and you are doing.

    Hugs,

    Kelly

     

  • Rosamond M
    Rosamond M Member Posts: 86 Member
    A little confused!

    Your mum is extremely  fortunate to have a daughter such as you. I was lucky ,also ,to have my daughter as a wonderful support during the roller coaster experience of diagnosis and treatment. She sat with me ( when she could ) during my chemo as well as taking notes when the medical team came to visit. She also was able to talk with them and ask her own questions. It really helped her she said as she could see for herself first hand and didn't have to wonder how I was going. Of course I realise that it isn't always possible for others to be this available but your support of your mum is obvious and I am sure this will help her enormously.  The knowledge and experience of the women on this site is a great help and lets you realise you and your mum are not alone in this experience. Best wishes to you both! 

  • Alexandra
    Alexandra Member Posts: 1,308
    Hello Joyce and welcome to the forum

    Sorry about your mother's diagnosis. It's good that her CA125 dropped after surgery. Standard treatment for stage 3C is 6 to 8 rounds of Taxol / Carboplatin. If her CA125 drops before 2nd round, you will know that chemo is working. Normally if she can tolerate chemo, they will not stop even if her CA125 is in the normal range, in order to kill microscopic cancer cells left over after surgery.

    You might want to ask the surgeon (or read surgery transcript) if surgery was optimal, meaning no cancer bigger than 1cm left. If it was, ask about IP (intra-peritoneal) chemo option, that is currently considered preferred to IV chemo for optimally debulked stage 3C patients in otherwise good health.

    All the best to you and your mom.

    Alexandra 

  • Joyjoy515
    Joyjoy515 Member Posts: 6
    kikz said:

    Glad you found us.

    I was 62 when diagnosed three years ago.  My initial CA 125 was 6900 and increased to 9000 before pre-surgery chemo.  After 3 rounds chemo it was 1600, dropping to 13 after surgery.  I had 8 more infusions and CA 125 settled at around 7 for a while.  I had 18 months remission before it starting to climb and thanks to estrogen blockers was able to avoid chemo for an additional 13 months.  I am in treatment now and the chemo seems to be working.

    It is very frightening to find out one has this particular disease.  I was convinced I would die in a few months.  That is not the case.  Some women don't recur and many continue to live full lives through several recurrences.  Life is changed forever but it doesn't mean your mom cannot have a good life.  It's just different.

    I was declared in remission once my CA 125 was low and a CT scan showed no evidence of disease.  I am looking forward to hearing that again.

     

    Welcome and my best wishes to your mom.

    Karen

    Thank you all so much for

    Thank you all so much for your kind words and inspiring stories!! I feel so much better after reading everyone's stories of how difficult it can be but that one can still have a great life even with cancer.

    As of right now my mother is doing well. She hasn't had any side effects from the first round of chemo yet.  Her blood pressure is a little out of whack, but other than that she seems to be doing great. We were proactive and cut her hair (boy was it long) and now she has a short Halle Berry style haircut Tongue Out She already said that when it starts to fall out she will make sure to shave it off, get her wig and her scarves and keep herself moving forward.

    All you ladies are so strong and I pray that one that there will be a cure for this horrible disease. I will continue to check in and let you all know how she's doing. Laughing

     

  • Joyjoy515
    Joyjoy515 Member Posts: 6
    Alexandra said:

    Hello Joyce and welcome to the forum

    Sorry about your mother's diagnosis. It's good that her CA125 dropped after surgery. Standard treatment for stage 3C is 6 to 8 rounds of Taxol / Carboplatin. If her CA125 drops before 2nd round, you will know that chemo is working. Normally if she can tolerate chemo, they will not stop even if her CA125 is in the normal range, in order to kill microscopic cancer cells left over after surgery.

    You might want to ask the surgeon (or read surgery transcript) if surgery was optimal, meaning no cancer bigger than 1cm left. If it was, ask about IP (intra-peritoneal) chemo option, that is currently considered preferred to IV chemo for optimally debulked stage 3C patients in otherwise good health.

    All the best to you and your mom.

    Alexandra 

    Great advice

    Hi Alexandra:

    I will have to look into this. The only thing I remember with the surgery the surgeon said was that he found it in the ovaries, uterus and lymph nodes (9 of the 27). He told me after surgery "I completely cleaned her out and left nothing in there including taking the lymph nodes out." I'll see if I can get a copy of her medical records from the hospital.

    Thanks for the insider :)

    Joyce

  • Joyjoy515
    Joyjoy515 Member Posts: 6

    A little confused!

    Your mum is extremely  fortunate to have a daughter such as you. I was lucky ,also ,to have my daughter as a wonderful support during the roller coaster experience of diagnosis and treatment. She sat with me ( when she could ) during my chemo as well as taking notes when the medical team came to visit. She also was able to talk with them and ask her own questions. It really helped her she said as she could see for herself first hand and didn't have to wonder how I was going. Of course I realise that it isn't always possible for others to be this available but your support of your mum is obvious and I am sure this will help her enormously.  The knowledge and experience of the women on this site is a great help and lets you realise you and your mum are not alone in this experience. Best wishes to you both! 

    Hi Rosamond:
    Yes, I went with

    Hi Rosamond:

    Yes, I went with her to her first treatment and plan to be at each one. It was at first very scary, I'm 36 years old and am afraid of what could happen. But I remain postive for her and ask all the questions that she does not really know to ask. By continuing to research and read and connecting with others in her situation I am able to explain to her that she's not alone and that many women fight back and win!.

    Thanks again!

    Joyce