crap

nancy591
nancy591 Member Posts: 1,027 Member
edited March 2014 in Ovarian Cancer #1
My ca125 took another 10 point jump and is now at 43. PET/CT on 9/1/10 showed stability. A new treatment regimen is probably in my immediate future. If so, I will probably go with the clincial trial oral EMND-2076.

I've been on chemo non stop since January. I am on my 2nd regimen. Thankfully the bowels are moving fine and I still have no symptoms. It is so friggin scary to think about the grim facts of this disease when chemo stops working.

I emailed the GYN oncologist to see how to proceed. I wonder if they will they scan again so soon.
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Comments

  • softD
    softD Member Posts: 69
    #2
    Aww Nancy :(

    sorry to hear your ca125 is rising. Sounds similar to me, mine has risen 6..15..25..51! Next bloods tomorrow (I've been on tamoxifen while waiting for a laparoscopy..surgeon on holidays!)
    I also had an unremarkable pet/ct (2 weeks ago) so my onc decided best thing to "look & see".I have no symptoms either...that is what is so deadly with this crappy disease!
    Hopefully your rising ca125 may be due to some inflammation? or other cause, and not the cancer again. (everything crossed for you!)
    Good luck with whatever it is you decide to do. Please let us know how you get on.
    Take care,
    Carolyn xx
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #4
    Hi Nancy. I, too, am sorry
    Hi Nancy. I, too, am sorry you have to go through this. Believe me, I know the feeling. I've been on chemo for a year and finally my numbers are going down. I'm very confident that the right combo of treatments will be found for you too. There are so many, many alternatives out there. Keep heart and faith.

    Thinking of you.
    Kate
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    Sorry
    I am going to continue the cisto/gemzar in spite of a rise from 62 to 71 in the CA125 and do another CT scan in November. I have decided not to worry about the rise in the blood marker. The CT was stable with no new growth and some shrinkage. I probably will be on some form of chemo from here on out...
    Saundra
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #6
    Hi Nancy
    Hi Nancy.. for some reason I had to chuckle when I saw your tagline.. Crap.. yes I think that pretty much says it all when it comes to this horrible disease. It's such a waiting game isn't it. I found that out with my mom. You're always waiting for the next treatment, the next blood work , the next scan. Try not to be too discouraged. .. I know there's a treatment out there for you and maybe the next treatment will be the one!!!!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #7
    Cindy Bear said:

    Hi Nancy
    Hi Nancy.. for some reason I had to chuckle when I saw your tagline.. Crap.. yes I think that pretty much says it all when it comes to this horrible disease. It's such a waiting game isn't it. I found that out with my mom. You're always waiting for the next treatment, the next blood work , the next scan. Try not to be too discouraged. .. I know there's a treatment out there for you and maybe the next treatment will be the one!!!!

    ARGH! You just have to leave it to the fates, in God's hands.
    ((((Nancy))) I feel your pain. It's one thing to have your CA125 go up when you are on a chemo break; it's another to have it go up when you are in active treatment already! The same thing happened with me with taxol. But the next thing you try just may be the chemo that knocks you into a prolonged remission, so please don't dispair. 43 is still a pretty low CA125 (mine is 134!). I wonder too if they'll do another CT/PET so soon; I had a new CT/PET when my CA125 went up on the taxol, but it had been 2 1/2 months since my last one.

    You and I both started this journey at roughly the same time (fall 2008) and both have serous (right?), although mine is endometrial and yours ovarian. We seem to be experiencing many of the same challenges at the same time, too. But, Nancy, you are doing better than I am, (you have smaller disease size; and I have been in almost constant chemo since last November.) Take heart from that. You are going to be okay for lots more years; I am still optimistic for us both. My goal now is to try and stay symptom-free, and I think that we are both achieving that very worthwhile goal. If you don't FEEL sick, it's almost as good as not being sick. Maybe that's an overstatement; but hang onto the fact that you are symptom-free and that's a good thing. I read about the Clinical Trial drug; sounds like it works in a way similar to Avastin. VERY promising and taking a pill may almost be like not being in treatment at all! ((((Nancy)))
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
    Hi Nancy
    Crap is a good way to express your feelings. I am sorry about your rise. I understand how you are feeling because mine went from 34 - 71. The fact that you have no symptoms and feel well has to be a really good sign. My oncologist told me they have lots and lots of different chemo regimes to use and when one type doesn't work then they can offer you a different one.

    It is a very very scary journey but you are not alone - we are all here to support you. I know we only know each other via cyber space but I feel a kind of kinship with everyone on these boards.

    Keep posting so we know how you are doing.

    Tina xx
  • msfanciful
    msfanciful Member Posts: 559
    #9
    Hi I'm sorry to hear the
    Hi I'm sorry to hear the news.

    I too just hate what this cancer does to us and yes it is frightening to think how it
    all works against us.

    I'm praying the rising ca-125 is just a set-back.

    As my oncologist always says, "Now days it just a matter of finding the right poison for your body".

    Crazy, but unfortunately true.

    Stay strong and stay happy.

    Sharon
  • JosieO
    JosieO Member Posts: 12
    #10
    Jumping CA-125
    Hi Nancy

    I am new to CNS. I can totally relate to your news. It is very scary when chemo is done and you feel like you left blowing in the wind! My CA-125 was 12 after ending treatment up to 76 after 8 weeks. I had a 16 week regimen of Taxol weekly with Avastin added every 21 days my CA-125 is now back to 18 and I am still having Avastin only every 21 days. I am having my CA-125 done today and always feel stressed until I get the results. I was wondering what EMND-2076 is? I"ll keep you in my prayers. Stay strong and positive.

    Josie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #11
    lindaprocopio said:

    ARGH! You just have to leave it to the fates, in God's hands.
    ((((Nancy))) I feel your pain. It's one thing to have your CA125 go up when you are on a chemo break; it's another to have it go up when you are in active treatment already! The same thing happened with me with taxol. But the next thing you try just may be the chemo that knocks you into a prolonged remission, so please don't dispair. 43 is still a pretty low CA125 (mine is 134!). I wonder too if they'll do another CT/PET so soon; I had a new CT/PET when my CA125 went up on the taxol, but it had been 2 1/2 months since my last one.

    You and I both started this journey at roughly the same time (fall 2008) and both have serous (right?), although mine is endometrial and yours ovarian. We seem to be experiencing many of the same challenges at the same time, too. But, Nancy, you are doing better than I am, (you have smaller disease size; and I have been in almost constant chemo since last November.) Take heart from that. You are going to be okay for lots more years; I am still optimistic for us both. My goal now is to try and stay symptom-free, and I think that we are both achieving that very worthwhile goal. If you don't FEEL sick, it's almost as good as not being sick. Maybe that's an overstatement; but hang onto the fact that you are symptom-free and that's a good thing. I read about the Clinical Trial drug; sounds like it works in a way similar to Avastin. VERY promising and taking a pill may almost be like not being in treatment at all! ((((Nancy)))

    papillary serous
    Thanks Linda, your words really hit home. Not feeling sick is ALMOST as good as not being sick. That is SO true. I will try to live by those words. Funny on what we learn to accept as our new normal. 3 years ago I would never have imagined myself as the person I have become because of this illness. After the birth of my child in 2003 I developed a fear of dying and leaving my kids. Ironic, huh? Was it some sort of premonition?

    Yes, I do have stage IV, high grade, papillary serous ovarian.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #12
    thanks everyone
    You ladies really are awesome and can truly understand. That is something unobtainable with 'normal' people.

    I am not too very upset about it. I've taken it in stride. Of course I don't like it but I realize I've been doing everything in my power to control what I can. It is truly out of my hands.

    XOXOXO
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #13
    JosieO said:

    Jumping CA-125
    Hi Nancy

    I am new to CNS. I can totally relate to your news. It is very scary when chemo is done and you feel like you left blowing in the wind! My CA-125 was 12 after ending treatment up to 76 after 8 weeks. I had a 16 week regimen of Taxol weekly with Avastin added every 21 days my CA-125 is now back to 18 and I am still having Avastin only every 21 days. I am having my CA-125 done today and always feel stressed until I get the results. I was wondering what EMND-2076 is? I"ll keep you in my prayers. Stay strong and positive.

    Josie

    hi Josie
    Hi Josie,

    I hope you find this board helpful and resourceful. Not too long of a remission for you, huh? Major bummer. I hear great things about Avastin. Hopefully it will continue to keep your cancer in check. My oncologist wants to hold on to Avastin for me for later use. EMND-2076 is in phase II clinical trial and works in a similar fashion as Avastin. The downside, in my opinion, is it is being used as a single agent. I would much rather be in a trial that is giving a standard treatment with a new agent. I would take comfort knowing I am AT LEAST getting a standard treatment. The upside is the first scan would be in 8 weeks. So, if it proves not to be effective I would only have 'wasted' 8 weeks. I am not enrolled in the trial yet. I have to see if my gyn onc wants to scan me again so quickly as I just had a scan 9/1/10 that was stable. The trial is only accepting 60people nationwide and Memorial Sloan Ketterin in NYC has 20 of those spots. Hopefully, the trial will be open if/when I need it. There is another trial there with Taxol and MORab-003 that I am interested in. That one is phase III and is open to a larger group. The downside is it is a double blind so you dont know if you are getting Taxol alone or Taxol with MORab-003. You are allowed to have no more than 2 previous chemo regimens in both of these trials. So, I will only be allowed to participate in one of these trials. My gyn onc steered me to the EMND02076.
  • clamryn
    clamryn Member Posts: 508
    #14
    You are right, Crap it is.
    Nancy, I agree with you. The whole thing is crap. I pray that the clinical trial will be the one for that works for you. I was on chemo in 2008 and got about a 14 month break and then right back at it again. Since I now have finished up and the spot has NOT shrunk, doctor put me on Metformin pill. We will see. The whole thing is scary and you are so right about normal people not understanding. Keep this in mind, you are feeling good and don't let anyone bring you down.

    Take Care
    Linda
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #15
    Hey Nance..
    I just left you a private message as well...So sorry to hear about this news but soooo glad you are in a trial...Remember, your ct/pet shows no progression,,and that your CA-125 is NOT a valid indicator for you....Scans don't lie....love you...Lisa
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #16
    Lisa13Q said:

    Hey Nance..
    I just left you a private message as well...So sorry to hear about this news but soooo glad you are in a trial...Remember, your ct/pet shows no progression,,and that your CA-125 is NOT a valid indicator for you....Scans don't lie....love you...Lisa

    trial
    Sorry if I didn't make myself clear. I am NOT in the trial yet. If they switch me I will go into the trial....IF it is still open!
  • Angelasmom2
    Angelasmom2 Member Posts: 146
    #17
    nancy591 said:

    trial
    Sorry if I didn't make myself clear. I am NOT in the trial yet. If they switch me I will go into the trial....IF it is still open!

    prayers
    My prayers and thoughts go out to you. May you be able to rest in God hands. Linda
  • Unknown
    Unknown
    #18
    This comment has been removed by the Moderator
  • JosieO
    JosieO Member Posts: 12
    #19
    nancy591 said:

    hi Josie
    Hi Josie,

    I hope you find this board helpful and resourceful. Not too long of a remission for you, huh? Major bummer. I hear great things about Avastin. Hopefully it will continue to keep your cancer in check. My oncologist wants to hold on to Avastin for me for later use. EMND-2076 is in phase II clinical trial and works in a similar fashion as Avastin. The downside, in my opinion, is it is being used as a single agent. I would much rather be in a trial that is giving a standard treatment with a new agent. I would take comfort knowing I am AT LEAST getting a standard treatment. The upside is the first scan would be in 8 weeks. So, if it proves not to be effective I would only have 'wasted' 8 weeks. I am not enrolled in the trial yet. I have to see if my gyn onc wants to scan me again so quickly as I just had a scan 9/1/10 that was stable. The trial is only accepting 60people nationwide and Memorial Sloan Ketterin in NYC has 20 of those spots. Hopefully, the trial will be open if/when I need it. There is another trial there with Taxol and MORab-003 that I am interested in. That one is phase III and is open to a larger group. The downside is it is a double blind so you dont know if you are getting Taxol alone or Taxol with MORab-003. You are allowed to have no more than 2 previous chemo regimens in both of these trials. So, I will only be allowed to participate in one of these trials. My gyn onc steered me to the EMND02076.

    Crap
    Hi Nancy

    Thanks for the info. I just read in the Business Jornal that Genetech a company that does a lot of research in O.C. just got approved by the FDA to start trials on a new drug for O.C. it too is like Avastin. I just had my CA-125 yesterday for what I call "my non-chemo" day Friday. Avastin even though they say is not chemo. I still have lost my eyelashes, most of my eyebrows and well my hair never did grow back that much as you can see in my picture. I did a campagin for O.C. through the hospital I work for and recieve treatment at. That was a billboard on a major highway here in Boston. I see you go to Sloan. I am from Long Island and my first husband had cancer and I spent many days there. Your in awesome hands. Hope all goes well for you. Keep in touch.

    Josie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #20
    JosieO said:

    Crap
    Hi Nancy

    Thanks for the info. I just read in the Business Jornal that Genetech a company that does a lot of research in O.C. just got approved by the FDA to start trials on a new drug for O.C. it too is like Avastin. I just had my CA-125 yesterday for what I call "my non-chemo" day Friday. Avastin even though they say is not chemo. I still have lost my eyelashes, most of my eyebrows and well my hair never did grow back that much as you can see in my picture. I did a campagin for O.C. through the hospital I work for and recieve treatment at. That was a billboard on a major highway here in Boston. I see you go to Sloan. I am from Long Island and my first husband had cancer and I spent many days there. Your in awesome hands. Hope all goes well for you. Keep in touch.

    Josie

    billboard
    What does the billboard say? I cannot read it. It is AWESOME you were able to do a billboard!!!!
  • eward
    eward Member Posts: 210
    #21
    crap
    My mom is going through a bunch of crap, too. She either has PPC/ovarian cancer spread to the breast or inflammatory breast cancer to add to her list of crap. Her CA is still close to 2000. My heart goes out to all of you dealing with this seemingly random disease. It is all crap and I hate it, too.

    Sending love,
    Eileen

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