My cancer seems very aggressive

Tina Brown
Tina Brown Member Posts: 1,036 Member
in Ovarian Cancer #1
Had my appointment today for CA125 and scan results. Not good. CA125 is up from 485 to 1,305 and scan shows disease progression. My oncologist began by telling me it was not good news. Only finished Topotecan 6 weeks ago so this is quite a blow. My onc has put me on an oral chemo called Leukeran (Chlorambucil). Has anyone ever heard of it? Has anyone ever been on it? I am kind of scared as this disease seems to be taking over my life I am powerless to do anything about it.

Comments

  • 7 angels
    7 angels Member Posts: 20
    #2
    ct scan
    showed my is advancing showing spot on liver pocket of fluid on right side but the couldnt feel it. suppose to do different chemo drug advastin along with one other (sry cant remember the name of it )was suppose to start today but couldnt as waiting for the percertification from insurance company said it could take up to 2 wks. Thats crazy. My ca125 was 60.6 last month now 92 Now getting very concerned Im not going to give up at all will fight . this was just a week of not so good news started last week when daughter said they would be moving to Georgia at end of school, sonin law took a promotion happy at that but dont take away my rocks. They have 2 kids and they are the world to me. My grandaughter when she was told a yr and half ago she came outside sit on my lap and gave me her angel pin that my husband (her Papa) gave her at birth put it in her hospital bassinet told me this was to bring me luck I tale it with me always < Ihold it during doctor visit and chemo time. I will continue to fight this but Im also getting scared with all shortages of chemo drugs and such. Take care and continue to fight. Sherry
  • karen1951
    karen1951 Member Posts: 103
    #3
    tina...i am so sorry you got
    tina...i am so sorry you got such devastating news. you and i seem to be right on the same page...my ca125 is up to 1300 and the disease has progressed...all through my abdomen. i did two rounds of topotecan and it obviously did nothing because my onc switched me to gemzar...i've had one round so far (2 weeks on and 1 week off) tomorrow i start the 2nd round. i am going to see a new doc next week to talk about the possibility of a 2nd debulking surgery. at this point....i'm as terrified as you are...i'm feeling a gradual decline in my health....i will pray for you...please keep me posted....karen
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #4
    karen1951 said:

    tina...i am so sorry you got
    tina...i am so sorry you got such devastating news. you and i seem to be right on the same page...my ca125 is up to 1300 and the disease has progressed...all through my abdomen. i did two rounds of topotecan and it obviously did nothing because my onc switched me to gemzar...i've had one round so far (2 weeks on and 1 week off) tomorrow i start the 2nd round. i am going to see a new doc next week to talk about the possibility of a 2nd debulking surgery. at this point....i'm as terrified as you are...i'm feeling a gradual decline in my health....i will pray for you...please keep me posted....karen

    Dear Tina, Sherry, and Karen
    Please know that I'm praying for all of you brave ladies as you each fight this battle.

    Hugs,
    Kelly
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
    karen1951 said:

    tina...i am so sorry you got
    tina...i am so sorry you got such devastating news. you and i seem to be right on the same page...my ca125 is up to 1300 and the disease has progressed...all through my abdomen. i did two rounds of topotecan and it obviously did nothing because my onc switched me to gemzar...i've had one round so far (2 weeks on and 1 week off) tomorrow i start the 2nd round. i am going to see a new doc next week to talk about the possibility of a 2nd debulking surgery. at this point....i'm as terrified as you are...i'm feeling a gradual decline in my health....i will pray for you...please keep me posted....karen

    The morning after
    Hi Karen we do seem to be on the same page. I asked about surgery but my onc said I wouldnot get any benefit from it as they couldn't get it all out as it is everywhere. The lining of my peritoneum has thicked (I have PPC) and the lining of my lungs. I don't actually feel ill!!! Topotecan worked really well for me for the first 3 cycles but it then stopped. Karen - do you have any results from the Gemzar?

    I was terrified and disappointed and p*****ed off and heartbroken for my family. My dad wanted to pay for me to have avastin as it not available in the UK on our health service.

    But now after sleeping on it I think I have a bit of my mojo back and I will continue to fight it. I know my internal organs are clear so that is one big bonus.

    Take care all of you xxxx Tina
  • karen1951
    karen1951 Member Posts: 103
    #6
    Tina Brown said:

    The morning after
    Hi Karen we do seem to be on the same page. I asked about surgery but my onc said I wouldnot get any benefit from it as they couldn't get it all out as it is everywhere. The lining of my peritoneum has thicked (I have PPC) and the lining of my lungs. I don't actually feel ill!!! Topotecan worked really well for me for the first 3 cycles but it then stopped. Karen - do you have any results from the Gemzar?

    I was terrified and disappointed and p*****ed off and heartbroken for my family. My dad wanted to pay for me to have avastin as it not available in the UK on our health service.

    But now after sleeping on it I think I have a bit of my mojo back and I will continue to fight it. I know my internal organs are clear so that is one big bonus.

    Take care all of you xxxx Tina

    hi tina....i am really
    hi tina....i am really anxious to meet next thursday with the surgical oncologist...my oncologist told me last nov that surgery was not an option because it's deep and widespread. but he's not a surgeon. i want to be sure to explore all my options before i accept what i'm being told. as far as the gemzar....i've only had one round (2 weeks on and 1 week off) i start the second round today...i'm sure it takes a couple of rounds before we will know if it's working. i still feel okay and look fine...hard to believe there's this much rotten stuff going on inside. i can feel fluid in my left lung but there's not enough to drain again (i had over a litre drained last month) and i have a big pocket of fluid around the colostomy but instead of draining it i'm taking water pills. i am praying for you and all the other girls...please keep me posted....xoxo karen
  • oska
    oska Member Posts: 36
    #7
    Tina Brown said:

    The morning after
    Hi Karen we do seem to be on the same page. I asked about surgery but my onc said I wouldnot get any benefit from it as they couldn't get it all out as it is everywhere. The lining of my peritoneum has thicked (I have PPC) and the lining of my lungs. I don't actually feel ill!!! Topotecan worked really well for me for the first 3 cycles but it then stopped. Karen - do you have any results from the Gemzar?

    I was terrified and disappointed and p*****ed off and heartbroken for my family. My dad wanted to pay for me to have avastin as it not available in the UK on our health service.

    But now after sleeping on it I think I have a bit of my mojo back and I will continue to fight it. I know my internal organs are clear so that is one big bonus.

    Take care all of you xxxx Tina

    Avasti
    Hi Tina,so sorry about your news,just wanted to let you know I am certain. Avastin was recently approved in the UK.someone posted the link on line a few weeks ago. I aways take a keen interest in what they are doing in England as I am from Nottingham like you. Stay strong and do some research fight for anything you can get to help.

    Patricia
  • oska
    oska Member Posts: 36
    #8
    Tina Brown said:

    The morning after
    Hi Karen we do seem to be on the same page. I asked about surgery but my onc said I wouldnot get any benefit from it as they couldn't get it all out as it is everywhere. The lining of my peritoneum has thicked (I have PPC) and the lining of my lungs. I don't actually feel ill!!! Topotecan worked really well for me for the first 3 cycles but it then stopped. Karen - do you have any results from the Gemzar?

    I was terrified and disappointed and p*****ed off and heartbroken for my family. My dad wanted to pay for me to have avastin as it not available in the UK on our health service.

    But now after sleeping on it I think I have a bit of my mojo back and I will continue to fight it. I know my internal organs are clear so that is one big bonus.

    Take care all of you xxxx Tina

    Avastin
    Hi Tina,so sorry about your news,just wanted to let you know I am certain. Avastin was recently approved in the UK.someone posted the link on line a few weeks ago. I aways take a keen interest in what they are doing in England as I am from Nottingham like you. Stay strong and do some research fight for anything you can get to help.

    Patricia
  • Honordon
    Honordon Member Posts: 49 Member
    #9
    oska said:

    Avastin
    Hi Tina,so sorry about your news,just wanted to let you know I am certain. Avastin was recently approved in the UK.someone posted the link on line a few weeks ago. I aways take a keen interest in what they are doing in England as I am from Nottingham like you. Stay strong and do some research fight for anything you can get to help.

    Patricia

    My Prayers
    Am so sorry you have bad news I will keep you in my prayers.I hope that they can get you started on a drug that works and will be praying for you ... Donna ((hugs )
  • clamryn
    clamryn Member Posts: 508
    #10
    Dear Tina
    Tina I am so sorry. I did not want to hear this. This is one of the things I hate about cancer is all of the ups and downs. We get good news and then we get bad news. I just wished we could hold onto the good news for longer periods of time. Tina I am always admired you. I have put on my big girl panties and now you go get yours on. We will go into the ring together and fight like hell. And Karen you find yours too. Lets do it!

    Linda
  • Mwee
    Mwee Member Posts: 1,338
    #11
    clamryn said:

    Dear Tina
    Tina I am so sorry. I did not want to hear this. This is one of the things I hate about cancer is all of the ups and downs. We get good news and then we get bad news. I just wished we could hold onto the good news for longer periods of time. Tina I am always admired you. I have put on my big girl panties and now you go get yours on. We will go into the ring together and fight like hell. And Karen you find yours too. Lets do it!

    Linda

    Let's do it!
    Good thing we wear those big girl panties so well. We're in this fight together.
    (((HUGS))) Maria
  • karen1951
    karen1951 Member Posts: 103
    #12
    Mwee said:

    Let's do it!
    Good thing we wear those big girl panties so well. We're in this fight together.
    (((HUGS))) Maria

    tina. linda, maria and donna
    tina. linda, maria and donna and all you other wonderful brave girls.....you are all so right about this being such a roller coaster of emotions. i saw my oncologist today and he told me i'm doing better than 90% of women in my situation....and this is after the "2nd" opinion doc told me to choose palliative care if the gemzar doesn't work. i say...no way....i'm in it to win it!!! just being a little facetious here.... i came home today relishing the little "crumb" of hope he gave me....i went down and did the treadmill for 40 minutes....and i don't even do the treadmill. all of us have been dealt a really unlucky hand of cards...but like my husband says "it is what it is" i don't even know if that makes sense....but i do know this.....it's all out of our control.....i ask God every night to hold my hand thru this.... God bless each and every one of us....love to all...karen
  • mopar
    mopar Member Posts: 1,972 Member
    #13
    TO ALL OF YOU WONDERFUL SURVIVORS!
    This news is so distressing, and I'm sure 'ten-fold' for you. And I cringe when I hear everyday about these 'shortages'. It's dispicable.

    Be of good courage, as I know all of you are. You are an inspiration, and you are all so strong. My prayers for all of you will be that God will lift you up out of this pit of dispair, bring you strength, joy, peace and health. I'm topping it off with a good dose of HUGS!

    Monika
  • kikz
    kikz Member Posts: 1,345 Member
    #14
    mopar said:

    TO ALL OF YOU WONDERFUL SURVIVORS!
    This news is so distressing, and I'm sure 'ten-fold' for you. And I cringe when I hear everyday about these 'shortages'. It's dispicable.

    Be of good courage, as I know all of you are. You are an inspiration, and you are all so strong. My prayers for all of you will be that God will lift you up out of this pit of dispair, bring you strength, joy, peace and health. I'm topping it off with a good dose of HUGS!

    Monika

    My thoughts and prayers
    go out to all of you courageous women as you continue to battle this disease. To go through this once is horrendous and it should be all any of us have to do. Unfortunately this monster has other ideas. But it doesn't know who it is dealing with. This board has some of the strongest, kindest and most determined women is has been my privilege to know.

    Karen
  • Twins Ga-Ga
    Twins Ga-Ga Member Posts: 10
    #15
    kikz said:

    My thoughts and prayers
    go out to all of you courageous women as you continue to battle this disease. To go through this once is horrendous and it should be all any of us have to do. Unfortunately this monster has other ideas. But it doesn't know who it is dealing with. This board has some of the strongest, kindest and most determined women is has been my privilege to know.

    Karen

    I second that!!!
    To all of you BRAVE women battling this mean cancer enemy. I feel bad that any of you have to go through it more than one time....just isn't right. It does make me feel better to read a lot of your comments and reminds me to have faith and be strong to fight if the cancer comes back into my life also. It's a lot of scarey days but I need to be reminded to be thankful for any good news and to not focus on worrying about a recurrance. Bless all you gals!!!!

    Linda
  • oska
    oska Member Posts: 36
    #16
    How are you
    Just wondered how you are doing. I just got my latest pet/ct results shows spine activity , five spots in the liver, the spine problem was there in December my onc said he was not too concerned ovca does not usually go there,so after six months gemzar carbo a lot of the doses were reduced .he wants me to have a colonoscopy because I have been having bowel issues,then a liver biopsy thinks maybe It is a new cancer and not ovca mets. Wondering if I should get a second opinion . I hope you are keeping your spirits up been thinking about you.
    Patricia xxx
  • LoveButterflies
    LoveButterflies Member Posts: 74
    #17
    Hi Tina, wondering how you
    Hi Tina, wondering how you are doing lately. You have been in my prayers, as have the other courageous ladies on this board. Hope your spirits are up and renewed. Don't give up! We are all in this together!

    God bless!

    Carmen
  • StephMooneyham
    StephMooneyham Member Posts: 4
    #18
    I know how you feel.
    I'm so sorry. I can definitely relate to what you're dealing with. This is the second time I've had cancer, and this time mine has been much more aggressive. When I had surgery on January 31 of this year, there were tumors everywhere inside my pelvis and abdomen, from the size of walnuts to cantaloupes. My doctor said they got every tumor there out. Chemo was supposed to kill any stray cells left behind.

    Well, four days after I was released from the hospital, I had to go to the emergency room for extreme pain. They did a CT scan that showed within the twelve-day period between my surgery and my ER visit, the cancer had already spread to four places on my liver. So I had to start chemo as soon as possible.

    Ever since my mom died five years ago, it's been nothing but death and heartache and cancer. I think maybe that's why I haven't cried about my cancer this time or really had any emotions about it at all. I'm just so used to life screwing me over that it doesn't even faze me anymore.
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #19
    StephMooneyham said:

    I know how you feel.
    I'm so sorry. I can definitely relate to what you're dealing with. This is the second time I've had cancer, and this time mine has been much more aggressive. When I had surgery on January 31 of this year, there were tumors everywhere inside my pelvis and abdomen, from the size of walnuts to cantaloupes. My doctor said they got every tumor there out. Chemo was supposed to kill any stray cells left behind.

    Well, four days after I was released from the hospital, I had to go to the emergency room for extreme pain. They did a CT scan that showed within the twelve-day period between my surgery and my ER visit, the cancer had already spread to four places on my liver. So I had to start chemo as soon as possible.

    Ever since my mom died five years ago, it's been nothing but death and heartache and cancer. I think maybe that's why I haven't cried about my cancer this time or really had any emotions about it at all. I'm just so used to life screwing me over that it doesn't even faze me anymore.

    canot sure how to address you
    Stephmooneyham,

    Wow that was a lot to say, it broke my heart reading your responce. Just getting cancer fells like life is screwing you over but believe me it's not. Cancer is just something that happen to us but it is not us. You can let the cancer difine you or you can become a warrior. I chouse to become a warrior. I had to fight with all I had or I would die and dieing was not in my book of life. Please allow yourself sometime to grieve it is hard to do when you have been through as much as you have but you need to grieve what you are going through, grieve the lose of your normal life because as much as I hate to say it your normal life is over in some respect. I am praying for you and please return to this site for support we are all hear to do that we can't take your pain or disease away but we can love and support you and that is what we are here to do.

    sorry for the bad spelling but I did get chemo brian very bad and now I have the jumping of my mussles I think from lyrica so spelling is never really good

    Love, Hugs, and Prayers
    Anne

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