Ca125 has doubled

scatsm
scatsm Member Posts: 296 Member
in Ovarian Cancer #1

I am now at 44 which signals a recurrence.

was 17 just 2 months ago. I was prepared for the news but it still made me cry. I'll have another ct scan Thursday and meet with my gyn/onc on Friday. He had warned me that there was "nodularity on the omentum" that was new from the last scan in 2012.

so, I had a 2 year remission from ovca....too bad the last year and a half I had to have the breast cancer too....sigh...I'm feeling a bit sorry for myself tonight.

What will my options be, I wonder? I don't think I could tolerate taxol again...too much neuropathy. What have been your second line treatments? How long do I have left? These are the thoughts I'm struggling with.

Thank you all for your support and strength.

Susan ;-(

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Comments

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #2
    Susan, Im sorry to hear you

    Susan, Im sorry to hear you are starting into a reoccurrance,,,,now is the time to take one day at a time....take it easy and get a massage or facial to relax and give yourself a treat. One day at a time when dealing with starting treatment again. Kim

  • Alexandra
    Alexandra Member Posts: 1,308
    #3
    Susan, I am very sorry...

    There is no shame in crying and feeling sorry for yourself. Get it all out today, and get ready to fight this thing again tomorrow.

    Because your remission lasted 2 years, chances are they will offer you to repeat carboplatin with or without taxol.

    Try to get into Clovis PARP inhibitor trial NCT01891344 (ARIEL2); today I heard that it's still enrolling BRCA+ women, but it's close to the limit.

    Only god and actuaries know how long we all have left. You have what I have plus 6 months. When you see my obituary, you can start worrying. For now... forget about it!

     

    Bear hugs Susan

    !רפואה שלמה

     

     

  • wholfmeister
    wholfmeister Member Posts: 315
    #4
    That sucks.

    I am so sorry you have been thrown into cancer again.  Go ahead and cry.  Get it all out tonight, because tomorrow you need to get up and breathe and get ready to battle.  Do not give into panic.  You need a clear head.  One day at a time, with the same determination you smacked it down before.  Wish I was there to give you a hug!

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #5
    You have an excellent chance of another long remission

     Because you have had a long remission your chances are good to have another one. There are tons of chemos out there. I know this is a shock but you will get through this.

    Cancer sucks and this particular one sucks *********!(a very bad word )

    Colleen

  • Glad to be done
    Glad to be done Member Posts: 569
    #6
    Cafewoman53 said:

    You have an excellent chance of another long remission

     Because you have had a long remission your chances are good to have another one. There are tons of chemos out there. I know this is a shock but you will get through this.

    Cancer sucks and this particular one sucks *********!(a very bad word )

    Colleen

    Susan I am so sorry to hear

    Susan I am so sorry to hear this.  Are you having any symptons?  I hate that dam ca125 test.....  You are in my thoughts and prayers....  You have cancer.....Cancer does not have you.  Put on your fighting tights and let's get started.....  Stay tough my friend.  You can do this...  In case you ever feel like you can't, you have all of us behind you fighting with you...  We got your back...  We will do this together.

  • childofthestars
    childofthestars Member Posts: 251 Member
    #7
    Susan

    I am truly p***d off to hear about your recurrence - you are allowed to feel sorry for yourself but not for long!  Now is the time to fiight like a girl! Who knows how much time ANY of us have so all I can say is laugh, cry, be sad, be happy, be weak, be strong but live for the now. We are all routing for you & each other.

    Michelle xxx 

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #8
    childofthestars said:

    Susan

    I am truly p***d off to hear about your recurrence - you are allowed to feel sorry for yourself but not for long!  Now is the time to fiight like a girl! Who knows how much time ANY of us have so all I can say is laugh, cry, be sad, be happy, be weak, be strong but live for the now. We are all routing for you & each other.

    Michelle xxx 

    Cancer Sucks

    so sorry you may have to deal with this beast again. 44 is still a good number. Dealing with one cancer is enough...but two! I know you can beat this and have a very long remission again. Let yourself cry and then take a deep breath..look up and say I can do this...God is watching you..stay strong..Val 

  • scatsm
    scatsm Member Posts: 296 Member
    #9
    poopergirl14052 said:

    Cancer Sucks

    so sorry you may have to deal with this beast again. 44 is still a good number. Dealing with one cancer is enough...but two! I know you can beat this and have a very long remission again. Let yourself cry and then take a deep breath..look up and say I can do this...God is watching you..stay strong..Val 

    Thanks everyone....

    Just knowing you all are there helps to get me through this. Thank you for your kind thoughts and encouraging comments.

    I had the ct scan today. My PCP called me and told me that the nodules on my omentum have grown in 2 months. Some of the nodules are 4 cm in size. They are consistent with ovarian cancer. Nothing on the lymph nodes or any organs. So I am wondering, will I start treatment? Any thoughts?

    Susan

  • Alexandra
    Alexandra Member Posts: 1,308
    #10
    scatsm said:

    Thanks everyone....

    Just knowing you all are there helps to get me through this. Thank you for your kind thoughts and encouraging comments.

    I had the ct scan today. My PCP called me and told me that the nodules on my omentum have grown in 2 months. Some of the nodules are 4 cm in size. They are consistent with ovarian cancer. Nothing on the lymph nodes or any organs. So I am wondering, will I start treatment? Any thoughts?

    Susan

    Treatment

     

    The standard practice is to wait with active treatment until symptoms start appearing (3-4 months from now). In my opinion PARP trial is a better option for you than chemo. Susan, I don't remember if you had preventative mastectomy or curative mastectomy for diagnosed breast cancer. Breast cancer history < 3 years ago may exclude you. If you're at all interested in the Rucaparib (ARIEL2) trial call contact below and ask who the trial NCT01891344 investigator is in your area. Spaces for BRCA+ women are very limited, in a couple of weeks they will stop enrollment. If you want PM me and I will send you detailed description.

     

    Sanjay Shetty, Sr. Clinical Operations Manager

    Clovis Oncology, Inc. 

    Direct: +1.415.409.5447 

    Mobile: +1.415.694.0517 

    sshetty@clovisoncology.com

     

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #11
    Alexandra said:

    Treatment

     

    The standard practice is to wait with active treatment until symptoms start appearing (3-4 months from now). In my opinion PARP trial is a better option for you than chemo. Susan, I don't remember if you had preventative mastectomy or curative mastectomy for diagnosed breast cancer. Breast cancer history < 3 years ago may exclude you. If you're at all interested in the Rucaparib (ARIEL2) trial call contact below and ask who the trial NCT01891344 investigator is in your area. Spaces for BRCA+ women are very limited, in a couple of weeks they will stop enrollment. If you want PM me and I will send you detailed description.

     

    Sanjay Shetty, Sr. Clinical Operations Manager

    Clovis Oncology, Inc. 

    Direct: +1.415.409.5447 

    Mobile: +1.415.694.0517 

    sshetty@clovisoncology.com

     

    Dear Susan

    I am so sorry that you are in a recurrence.  Please know that I'm sending you good thoughts and prayers from California.  And may your treatment kick your cancer's butt to the curb!

    Hugs,

    Kelly

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

    Thanks everyone....

    Just knowing you all are there helps to get me through this. Thank you for your kind thoughts and encouraging comments.

    I had the ct scan today. My PCP called me and told me that the nodules on my omentum have grown in 2 months. Some of the nodules are 4 cm in size. They are consistent with ovarian cancer. Nothing on the lymph nodes or any organs. So I am wondering, will I start treatment? Any thoughts?

    Susan

    YOU HAVE evidence of disease

    YOU HAVE evidence of disease and seological elevation (CA125increase). I think you will be looking at options to slow the growth of the cancer. That could be chemo, but you could look at clinical trials witH PARP inhibitors either single therapy or in conjunction with chemo. I just talked with my oncologist and he feels the PARP inhibitors look more promising in ovca than breast cancer. Start taling with your doctors about options. Kim

     

  • 2timothy1 7
    2timothy1 7 Member Posts: 345
    #13
    Susan

    Just wanted to tell you I did not start treatment for my recurrence until my ca 125 reached over 200, which took  5 months. Also waited bc I was trying to get into a PARP trial with olaparib, which I highly recomend!

  • scatsm
    scatsm Member Posts: 296 Member
    #14
    My breast cancer excluded me from all PARP trials

    Ironically, my BRCA mutation associated second cancer excluded me from all current PARP trials. I'm a year and a half from diagnosis of breast cancer  and the exclusions run from 3 to 5 years. My gyn/onc and I were both so disappointed. Hopefully after I am done with chemo for this recurrence, I will have a chance to use a PARP inhibitor. I'd wait 5 months for it, but not a year and a half. ;-(.... So chemo it is, starting next week. I am going in strong with a positive attitude!

  • mopar
    mopar Member Posts: 1,972 Member
    #15
    scatsm said:

    My breast cancer excluded me from all PARP trials

    Ironically, my BRCA mutation associated second cancer excluded me from all current PARP trials. I'm a year and a half from diagnosis of breast cancer  and the exclusions run from 3 to 5 years. My gyn/onc and I were both so disappointed. Hopefully after I am done with chemo for this recurrence, I will have a chance to use a PARP inhibitor. I'd wait 5 months for it, but not a year and a half. ;-(.... So chemo it is, starting next week. I am going in strong with a positive attitude!

    THINKING OF YOU, SUSAN

    What can I say, it stinks, doesn't it?  But you're a 'seasoned' survivor, so you know the ropes.  So, hang in there.  Sending lots of hugs and prayers today to you, Susan.

     

    Monika

     

  • Marnel
    Marnel Member Posts: 42
    #16
    mopar said:

    THINKING OF YOU, SUSAN

    What can I say, it stinks, doesn't it?  But you're a 'seasoned' survivor, so you know the ropes.  So, hang in there.  Sending lots of hugs and prayers today to you, Susan.

     

    Monika

     

    radiation

    There is a new 10 year study out of md anderson that shows targeted radiation to be very effective in recurrent ovca. I finished radiation in January and have had no side effects. Most gyn onc are against it, including mine. I found an amazing rad onc in Seattle who gave me a copy of the study and even said he may be able to cure me. My onc was out of suggestions since I've had so much chemo. It might be worth a conversation with your onc but be prepared for him/her trying to talk you out of it.

  • Alexandra
    Alexandra Member Posts: 1,308
    #17
    How did your first Gemzar go today Susan?

    Keeping my fingers (and toes and eyes) crossed for you.

    image

  • 2timothy1 7
    2timothy1 7 Member Posts: 345
    #18
    Marnel said:

    radiation

    There is a new 10 year study out of md anderson that shows targeted radiation to be very effective in recurrent ovca. I finished radiation in January and have had no side effects. Most gyn onc are against it, including mine. I found an amazing rad onc in Seattle who gave me a copy of the study and even said he may be able to cure me. My onc was out of suggestions since I've had so much chemo. It might be worth a conversation with your onc but be prepared for him/her trying to talk you out of it.

    Radiation

    Marnel

    im so glad you are doing so well! Would you mind telling me if the cancer was in your lymph nodes?

    thanks so much.

  • scatsm
    scatsm Member Posts: 296 Member
    #19
    Alexandra said:

    How did your first Gemzar go today Susan?

    Keeping my fingers (and toes and eyes) crossed for you.

    image

    It was fine...

     

     

    me thinking my chemo was in the chip bag. It wasn't..

    I thought the chemo was in the chip bag, but I was wrong and had to have it the regular way. So far so good...have held the chips down...we'll see!

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #20
    scatsm said:

    It was fine...

     

     

    me thinking my chemo was in the chip bag. It wasn't..

    I thought the chemo was in the chip bag, but I was wrong and had to have it the regular way. So far so good...have held the chips down...we'll see!

    Hi Susan

    You're munching on one of my favorite snack foods!  Glad things went well today.  Sending lots of positive thoughts and prayers your way that you experience minimal side effects throughout this treatment.

    Kelly

  • Susan P
    Susan P Member Posts: 103
    #21
    Cafewoman53 said:

    You have an excellent chance of another long remission

     Because you have had a long remission your chances are good to have another one. There are tons of chemos out there. I know this is a shock but you will get through this.

    Cancer sucks and this particular one sucks *********!(a very bad word )

    Colleen

    ca125 has doubled

     Hi buddy Susan- like everyone else I am so sorr y to hear this.I am juat a few weeks after my tx's -so I read these things with interest for my future.  Like you, I suffer from  pretty bad neuropathy.  and would liked it to go away but a long as I feel it - I am alive.

    I have an advantage over many -- for 12 years I have dealt with being physically disabled from asevere stroke - paralyzed on left side use of one hand only- can't walk w/o a cane -- can't use a puiblic bathroom unless it has the correct side assisgt bar ( 50%) chance - then I havbe trouble pullin my pants up staight

    what I am saying  IS i HAVE DEALT WITH ACCEPTING  The muscle pain froim the stroke & not being able to drive & just go out with people.  My life chan ged forever in Aug 2002 & will be this way the rest of my life.  I've cried my bathtub of tears  get to this point.  now I just add the cancer probllems to my bundle of things to accept.  not easy -- but  nio choice

     

    last week we attended the funeral of a 55 yr old gal who'd been fighting for 5-6 yrs & chose not to have tx with the most recent recurrence - mentioning the tingly fingers & toes

    we are all different so are our situations - sure got me thinking

     

    I hope ththey find effective drugs that don't add to the neuropathy.

    you are strong enough to do this & crying is NOT a sign of weakness

     

    Susan P

    ~ "Be who you are... say what you feel ... those that mind...don't matter ....  an d thyose that matter...Don't mind"~ Dr Seuss

     

     

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