ca over 7000

rubyslippers
rubyslippers Member Posts: 53
edited March 2014 in Ovarian Cancer #1
Hi,
I am just writing because my mum has cancer , we have just found out and our world has fell apart , her ca 125 is just over 7000, we do not know what is round the corner , to me 7000 is so high that Im so scared of loosing my mum. xxxxx

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Hello, Ruby....
    Let me say
    Hello, Ruby....

    Let me say first of all that I am so sorry to hear about your mom. We know just how you feel. There are several daughters and caretakers on this board.

    Has your mom had surgery yet? They will stage her cancer at the time of surgery. Mine is IIIc. I was diagnosed last Sept and my CA125 was 4000. This week, it was 4.8. I have been in remission for several months. Don't give up hope.

    Carlene
  • rubyslippers
    rubyslippers Member Posts: 53
    #3
    Hissy_Fitz said:

    Hello, Ruby....
    Let me say
    Hello, Ruby....

    Let me say first of all that I am so sorry to hear about your mom. We know just how you feel. There are several daughters and caretakers on this board.

    Has your mom had surgery yet? They will stage her cancer at the time of surgery. Mine is IIIc. I was diagnosed last Sept and my CA125 was 4000. This week, it was 4.8. I have been in remission for several months. Don't give up hope.

    Carlene

    Hi Carlene ,
    thank you for
    Hi Carlene ,

    thank you for replying , first of all can I say reading everyones individual cases , you are all so brave , my heart goes out to all of you. My mum has not been well for a couple of months, she has put on about six stone in the last two months, she was taken into hospital last week because she could not breath and she had bleeding down below. She has been in hospital for a week and the only results we have are that they know she has a tumour because they had the results from the ca 125, they were over 7000, my mum is constantly in pain with her back. they tried to scan but she too much fluid in her abdomon. they are trying to drain some so they can see on Monday. We know monday is the day where our worlds will crash again. thank you again carlene xx
  • leesag
    leesag Member Posts: 621 Member
    #4
    Hi Ruby!
    I'm so sorry to
    Hi Ruby!

    I'm so sorry to hear about your mom. You will find comfort and information in equal measures here.

    I was diagnosed IIIC in January. My CA125 was 9824. During my surgery, the gyn/onc removed 10 liters of fluid (ascites) from my abdomen. I have finished my chemo regimen (6 treatments of carbo/taxol) and after the fourth treatment my CA126 was 16. I'll find out more after my scan and blood test on July 21st.

    I'm telling you this, so that you know I've been exactly where you and your mom are. My doctor told me that while my CA125 was high, it was not necessarily an indicator of how bad my cancer was, it would be, however, a reliable indicator of how well I responded to treatment. Like you, I was freaked out by a number that high, but my doctor was right. The actual number is much less important than whether or not or drops with treatment (and it has been a great deal of fun to watch it drop!).

    Make sure that your mom has a gynecologic oncologist to do any surgery that may be required. I will keep both of you in my prayers!

    Hugs!

    Leesa
  • rubyslippers
    rubyslippers Member Posts: 53
    #5
    leesag said:

    Hi Ruby!
    I'm so sorry to
    Hi Ruby!

    I'm so sorry to hear about your mom. You will find comfort and information in equal measures here.

    I was diagnosed IIIC in January. My CA125 was 9824. During my surgery, the gyn/onc removed 10 liters of fluid (ascites) from my abdomen. I have finished my chemo regimen (6 treatments of carbo/taxol) and after the fourth treatment my CA126 was 16. I'll find out more after my scan and blood test on July 21st.

    I'm telling you this, so that you know I've been exactly where you and your mom are. My doctor told me that while my CA125 was high, it was not necessarily an indicator of how bad my cancer was, it would be, however, a reliable indicator of how well I responded to treatment. Like you, I was freaked out by a number that high, but my doctor was right. The actual number is much less important than whether or not or drops with treatment (and it has been a great deal of fun to watch it drop!).

    Make sure that your mom has a gynecologic oncologist to do any surgery that may be required. I will keep both of you in my prayers!

    Hugs!

    Leesa

    Hi Leesa,, thank you. Your
    Hi Leesa,, thank you. Your words fill me with hope. today is the day that we find out the results from the ct scan, those numbers do not scare me anymore. thank you xxxx
  • Barbara53
    Barbara53 Member Posts: 652
    #6
    rubyslippers said:

    Hi Leesa,, thank you. Your
    Hi Leesa,, thank you. Your words fill me with hope. today is the day that we find out the results from the ct scan, those numbers do not scare me anymore. thank you xxxx

    lots of options to try
    Sorry you're here, but there's a roving pack of daughters with teal warrior moms/mums here, and we'll help you all we can. Regardless of what the initial findings are, keep in mind that there is much that can be done. My guess is that they will get the fluid under control and make plans to address the tumor. Sometimes they will shrink it with chemo before doing surgery. How old is your mum? Mine's almost 80, and has been fighting for 17 months. Good luck with this day.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    Barbara53 said:

    lots of options to try
    Sorry you're here, but there's a roving pack of daughters with teal warrior moms/mums here, and we'll help you all we can. Regardless of what the initial findings are, keep in mind that there is much that can be done. My guess is that they will get the fluid under control and make plans to address the tumor. Sometimes they will shrink it with chemo before doing surgery. How old is your mum? Mine's almost 80, and has been fighting for 17 months. Good luck with this day.

    LOL......
    "Roving pack of daughters"......I love it!
  • rubyslippers
    rubyslippers Member Posts: 53
    #8
    Hissy_Fitz said:

    LOL......
    "Roving pack of daughters"......I love it!

    Thank you so much, my mum
    Thank you so much, my mum is 61, they are removing over litre of fluid from her everyday but they keep saying they still cant see exactly what is going on, even after her ct scan. they say is definately ovarian cancer but dont know anything else , every day seems like a lot longer cos they dont seem to be doing anything to stop it. Its just so hard sitting and waiting. Im sorry for my moaning and this site has kept my sain and kept my hope alive thank you all so very much , big hugs to you all

    xxxxxx
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #9
    rubyslippers said:

    Thank you so much, my mum
    Thank you so much, my mum is 61, they are removing over litre of fluid from her everyday but they keep saying they still cant see exactly what is going on, even after her ct scan. they say is definately ovarian cancer but dont know anything else , every day seems like a lot longer cos they dont seem to be doing anything to stop it. Its just so hard sitting and waiting. Im sorry for my moaning and this site has kept my sain and kept my hope alive thank you all so very much , big hugs to you all

    xxxxxx

    Ruby....the ascites (fluid
    Ruby....the ascites (fluid inside the abdomen) will continue to come back until your mom starts chemotherapy. That will stop it from building back up. I had 3 liters drained just prior to my surgery. None since.

    Sometimes there is so much fluid, they can't tell anything from the CT scan and/or ultrasounds. That is probably the case with your mom. If I were you, I would push for immediate surgery. And you need to find a gynecological oncologist to do it, if at all possible. Change hospitals, if need be.

    I'm guessing you aren't in the US. Where are you located?

    Carlene
  • rubyslippers
    rubyslippers Member Posts: 53
    #10
    Hissy_Fitz said:

    Ruby....the ascites (fluid
    Ruby....the ascites (fluid inside the abdomen) will continue to come back until your mom starts chemotherapy. That will stop it from building back up. I had 3 liters drained just prior to my surgery. None since.

    Sometimes there is so much fluid, they can't tell anything from the CT scan and/or ultrasounds. That is probably the case with your mom. If I were you, I would push for immediate surgery. And you need to find a gynecological oncologist to do it, if at all possible. Change hospitals, if need be.

    I'm guessing you aren't in the US. Where are you located?

    Carlene

    Hi Carlene , Im situated in
    Hi Carlene , Im situated in uk. Mum is waiting to see the oncologist and gynie drs tomorrow. Can we insist on surgery I thought we just had to go along with what they said, sorry if I sound dumb but this really is new territory for us as a family. If you dont mind me asking can you tell me your story hun xxxx
  • uju99
    uju99 Member Posts: 13
    #11
    24000
    CA 125 is just a marker.....for some women - it is extremely sensitive. It will represent for good tool to find the status.....

    My wife had CA-125 reaching as high as 24000 ( yes, twenty four thousand ).....was in stage IV. Only the trick the doctors did was - gave her two shots of Abraxane, the drug really works well for 5 digit numbers. It went to 17 within 6 cycles. However, her CA-125 returned to 600 within 2 months of remission. Now she is in Avastin and Docetaxel. Age is another very important factor. So, far her host spot is clear. Now the whole concentration is in MET spot....which is lever. Eventually this will also clear out.....but, definitely looks like its going to take its own time to heal.....as it may have taken 10 yrs to develop in that host spot - who knows.........
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #12
    rubyslippers said:

    Hi Carlene , Im situated in
    Hi Carlene , Im situated in uk. Mum is waiting to see the oncologist and gynie drs tomorrow. Can we insist on surgery I thought we just had to go along with what they said, sorry if I sound dumb but this really is new territory for us as a family. If you dont mind me asking can you tell me your story hun xxxx

    Ruby....we have another Brit
    Ruby....we have another Brit on here (where are you, Tina?). And you are definitely not dumb. We were all OVCA dummies when we started. This is an education I never wanted, believe me.

    Can you insist on surgery? I don't know....but I would certainly try. Some doctors do prefer to administer chemo first, though - to shrink the tumors. If that's the case with your mom, it's perfectly legitimate, but they need to be doing SOMETHING, for heaven's sake.

    Click on my picture and you can read my very long-winded story. I hope you don't fall asleep half way thru it.

    Carlene
  • msfanciful
    msfanciful Member Posts: 559
    #13
    Hello Ruby,
    I am so sorry to
    Hello Ruby,

    I am so sorry to hear about your mother.

    One thing that I would definitely insist on is if ovarian cancer is really your mother's diagnosis, I would make sure that her doctor is specialized in gynecological cancers/surgeries.

    To have this type of specialized doctor insures first of all a better survival rate because they will know exactly what to look for, where and how treatment should be administered to your mother.

    I am sooo thankful that my doctor was specialized in my type of cancer.

    I was diagnosed in 2007 of Feb, as stage IV ovca.

    Please let us know how your mother is faring and oh yes, you should always feel free to ask her doctors questions, questions, questions. This way you will have a better knowledge of what you are dealing with by having all the info about this dreaded condition.

    Take care,



    Sharon
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #14
    rubyslippers said:

    Thank you so much, my mum
    Thank you so much, my mum is 61, they are removing over litre of fluid from her everyday but they keep saying they still cant see exactly what is going on, even after her ct scan. they say is definately ovarian cancer but dont know anything else , every day seems like a lot longer cos they dont seem to be doing anything to stop it. Its just so hard sitting and waiting. Im sorry for my moaning and this site has kept my sain and kept my hope alive thank you all so very much , big hugs to you all

    xxxxxx

    Hello Rubyslippers
    I have been reading about you. I am from the UK - Nottingham and I can understand the frustration you are feeling as it took quite a while for my doctors to diagnose me exactly. They knew I had cancer because they tested the fluid and found cancer cells. I had fluid around my lungs as well as my abdomen. They removed 3 litres from my right lung.

    It does take time for all the tests to be completed because they have to be certain of where the cancer is so they can treat it correctly. I remember this frustrating time all to well, but once they knew exactly where my cancer was the treatment started quickly. I was told that waiting 2-3 weeks won't compromise the cancer grow at all.

    I hope things go well for you. Keep posting love Tina xxx

    PS where in the UK are you from?
  • rubyslippers
    rubyslippers Member Posts: 53
    #15
    msfanciful said:

    Hello Ruby,
    I am so sorry to
    Hello Ruby,

    I am so sorry to hear about your mother.

    One thing that I would definitely insist on is if ovarian cancer is really your mother's diagnosis, I would make sure that her doctor is specialized in gynecological cancers/surgeries.

    To have this type of specialized doctor insures first of all a better survival rate because they will know exactly what to look for, where and how treatment should be administered to your mother.

    I am sooo thankful that my doctor was specialized in my type of cancer.

    I was diagnosed in 2007 of Feb, as stage IV ovca.

    Please let us know how your mother is faring and oh yes, you should always feel free to ask her doctors questions, questions, questions. This way you will have a better knowledge of what you are dealing with by having all the info about this dreaded condition.

    Take care,



    Sharon

    Hi thank you all for your
    Hi thank you all for your kind words, just to let you know that their is nothing they can do for mum , they said its too advance and she is too unwell for chemo. she was fine on friday and now she has deteriated so fast, i want them to start chemo , they have to do something xxxxxxx
  • kellyh33
    kellyh33 Member Posts: 287
    #16
    Hi
    It seems you and I are in the same boat. My Mom was diagnosed June 18th. Her CA 125 was 14,000. After her first treatment it dropped to 8000. We don't know what her numbers are yet after her second treatment. She goes for her third round of chemo August 5th and then surgery Sept 3rd. After that she will have three more rounds of chemo. I worry all the time about her too.
    I am very scared to lose my mom too. It is a very scary time. Mom had her head shaved on Thursday and thankfully it doesn't seem to bother her. She actually looks very cute with her scarves on her little head. The chemotherapy has not made her very sick at all. Just make sure your mom is taking something to prevent constipation.
    Let's hope both our Mom's will be okay.
  • kellyh33
    kellyh33 Member Posts: 287
    #17
    rubyslippers said:

    Hi thank you all for your
    Hi thank you all for your kind words, just to let you know that their is nothing they can do for mum , they said its too advance and she is too unwell for chemo. she was fine on friday and now she has deteriated so fast, i want them to start chemo , they have to do something xxxxxxx

    Sorry
    So sorry for sending the post I just sent. I missed this one. My heart goes out to you and your family.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #18
    kellyh33 said:

    Hi
    It seems you and I are in the same boat. My Mom was diagnosed June 18th. Her CA 125 was 14,000. After her first treatment it dropped to 8000. We don't know what her numbers are yet after her second treatment. She goes for her third round of chemo August 5th and then surgery Sept 3rd. After that she will have three more rounds of chemo. I worry all the time about her too.
    I am very scared to lose my mom too. It is a very scary time. Mom had her head shaved on Thursday and thankfully it doesn't seem to bother her. She actually looks very cute with her scarves on her little head. The chemotherapy has not made her very sick at all. Just make sure your mom is taking something to prevent constipation.
    Let's hope both our Mom's will be okay.

    Dear Daughters
    It will be one year from this weekend that my mother was diagnosed with stage III-C ovarian cancer. At first, it is really frightening, all I thought about was OMG I don't want to lose my mother...and I haven't...After the initial shock of the diagnosis, you will start to move into "fight" mode. Generally, they will give your Mom chemo and they will do a de-bulking surgery (Great word huh?). Then she will get more chemo. Then hopefully, she will have a lot of freedom from cancer, although she will have to be monitored very closely. This is not an easy ride, but it is doable. I would make sure she has a good gynecological/oncologist and surgeon who specializes in gynecological cancer as well. Studies show those who have treatment from the specialist may do better than those who don't. As far as the CA-125 numbers go, I don't pay that much attention to them anymore...You are really just looking for trends, so if your mom is trending down that is great news. There are a few of us daughters here on the board, who check in regularly and the women are great. My mother won't join, but every once in awhile I post a note from someone in her e-mail. Please come back and check in often. As a group, I often think between all the experience here we have more practical knowledge than many doctors.
  • eward
    eward Member Posts: 210
    #19
    Lisa13Q said:

    Dear Daughters
    It will be one year from this weekend that my mother was diagnosed with stage III-C ovarian cancer. At first, it is really frightening, all I thought about was OMG I don't want to lose my mother...and I haven't...After the initial shock of the diagnosis, you will start to move into "fight" mode. Generally, they will give your Mom chemo and they will do a de-bulking surgery (Great word huh?). Then she will get more chemo. Then hopefully, she will have a lot of freedom from cancer, although she will have to be monitored very closely. This is not an easy ride, but it is doable. I would make sure she has a good gynecological/oncologist and surgeon who specializes in gynecological cancer as well. Studies show those who have treatment from the specialist may do better than those who don't. As far as the CA-125 numbers go, I don't pay that much attention to them anymore...You are really just looking for trends, so if your mom is trending down that is great news. There are a few of us daughters here on the board, who check in regularly and the women are great. My mother won't join, but every once in awhile I post a note from someone in her e-mail. Please come back and check in often. As a group, I often think between all the experience here we have more practical knowledge than many doctors.

    daughters
    My mom is over a year from her stage 4 primary peritoneal diagnosis. She had debulking surgery then chemo from May 2009 until Oct/Nov 2009. She had a quick recurrence and was on chemo again this spring and early summer. Now she is on a third type of chemo. It has not been easy, but her CA just came down from 3400 to 2700, so the downward trend is good news. Diet and exercise can assist the body in fighting this disease. Naps and good sleep at night is important, too. I check this discussion board frequently if anyone has questions.

    If the doctors tell a patient there is nothing they can do, that is incorrect. The Block Center in Evanston, IL helps many people survive when they are told there is nothing left. My mom doesn't go there at this point, but I know a woman who believes 100% that they were the reason she lived for 7 years after she was given 6 months to live.

    Take care!

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