Etopocide Didn't Help

msfanciful
msfanciful Member Posts: 559
edited March 2014 in Ovarian Cancer #1
Well,

On top of finding out I was Brac negative (which I understand that my body has a less chance of fighting the cancer)., I also found out my etopocide did not help lower my ca-125 count.

My last reading 2-months ago was 49, as of Thursday it was 62. I will go in this Tuesday for an exam with my doctor. So now after carbo/taxol...carbo/taxol/avastin/ and etopocide, I have no earthly idea what the doc will recommend next. After having a break with the etopocide oral medication, I don't know what decision I will make Tuesday.

So that I can attempt to sleep the next 2 nights, has anyone had my similiar results? If so, what was your next treatment of choice?

I'm not having a pity-party or anything, just one of my moments especially after what you ladies have gone through I dare not...it's just disheartening is all.

Anyway if you will just keep me in your prayers would be wonderful.

I am freaking out now because I'm at the 3-year mark and from my understanding... on a good day 5 years is the max for a stage-4 ovarian cancer surivivor and I assume the etopocide not working means my cancer is becoming resistant?

God Bless you all and I will keep in touch.

Sharon

Comments

  • arbor3
    arbor3 Member Posts: 103
    #2
    Oral medicine
    Hi Sharon

    I am also 31/2 yr stage 4 survivor. I was on oral medicine last summer, the oral medicine did not help but had to stay for three months because I needed Dental work. Then the Dr put me on Gemzar for 3 sessions, did not help, now I am on Topotecan. I have had 3 sessions of Topotcan and my counts have not come down. I am not worried that my cancer has become resistant because there is other chemo they can try, and I will never give up.

    Dinora
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #3
    FIND ANOTHER RECIPE
    THERE ARE NUMEROUS CHEMOS OUT THERE....FIND A DOC WHO WILL COOK ONE UP FOR YOU....THERE WILL BE ONE...YES I JUST SAID A PRAYER....
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
    Statistics
    Dear Sharon, please do not look at statistics, they can not predict how long you survive. Besides I think they are old and the stats are changing. I am a seven year plus survivor and know others who have survived longer than me and most of the time was spent on chemo. I know this doesn't help with the numbers but here is what I do ~ I look at the small increase as the chemo had to be doing something as the numbers didn't go too high. The last 3 treatments of carbo my numbers went up, first time 78, then the last 2 times 20 pts each jump, not to bad in the realm of the things.

    Know we all keep you in prayer. Hugs ♥ Prayers Bonnie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #5
    UGH!
    We are fighting along side you. It is soooooo scary!! I am on Doxil now for my first reoccurence. If this doesn't work, which we aren't sure it is, I may go on Gemzar or possibly Toptecan. My oncologist told me etopocide really doesn't work.

    Curious to know how long was your remission before you went back on carbo/taxol/avastin?

    My oncologist told me if the Doxil doesn't work I could either do a traditional treatment, probably Gemzar OR there are two new clinical trials opening up in April. I don't know what the trials are or what phase they are in. I will let you know when I get more information.

    My fear is too that nothing will work. I guess that all of our fear. I think of Bonnie and I know she has been actively fighting for 7 years. I wonder if she is the exception, not the rule! Sometimes it to overwhelming to think about....I see my little boys faces and I can't imagine leaving them.

    Good luck Sharon!!!! If you need a pity party go right ahead and have one. It is here that you can let your fears out, we understand.

    Stay strong!!
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    Dear Sharon,
    You and I are on a similar path. My CA125 is up to about 162 and still little cancer showing on the CT scan. I am on Doxil and with each dose I get diverticulitis due to a weird messed up colon from either adhesions or chemo or genes. I'm in Midland and I believe we each are with Texas Oncology. There are still lots of chemos to try and after two years off you can try an old one. Take this one day at a time, dear friend, and do not jump into the "what ifs". (((Hugs and praying))) Saundra
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    Hi Sharon
    When you say you are BRCA negative, do you mean you have a gene change on either BRCA 1 or 2? It is an awful feeling, living with this disease - its a bit like having a time bomb under your bed, you know its going to go off but you don't know when.

    I totally understand how you are feeling & I literally HATE going to see me oncologist for results- for me that is the hardest thing about my cancer. Whilst I am away from the doctors & hospital I can forget about it for a while & make believe I am OK.

    I think you have to forget about stats and how other people are doing etc. We are all different and technology today is fantastic - the doctors WILL find a way to help you I am sure of that. You have every right to feel the way you do don't think you are less deserving than anyone else. I am not a religious person but I am thinking about you. Take care Tina xxx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
    Hi Sharon
    When you say you are BRCA negative, do you mean you have a gene change on either BRCA 1 or 2? It is an awful feeling, living with this disease - its a bit like having a time bomb under your bed, you know its going to go off but you don't know when.

    I totally understand how you are feeling & I literally HATE going to see me oncologist for results- for me that is the hardest thing about my cancer. Whilst I am away from the doctors & hospital I can forget about it for a while & make believe I am OK.

    I think you have to forget about stats and how other people are doing etc. We are all different and technology today is fantastic - the doctors WILL find a way to help you I am sure of that. You have every right to feel the way you do don't think you are less deserving than anyone else. I am not a religious person but I am thinking about you. Take care Tina xxx
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
    Dear Sharon,
    first of all Bravo!!! to you on your 3 years!!! And at stage 4!

    I don't know anything about etopocide, but know there are still many choices you can have. Taxol comes to mind, although I am not a doc, it looks like it has been 3 years and it might have contributed to your 1 year NED. Just something to ask your doc, maybe.

    Hang in there, Sharon!!!

    Love and hugs,
    Kathleen:)
  • ten101
    ten101 Member Posts: 14
    #10
    Keep fighting
    Sharon, I know you will keep fighting as I have read many of your posts. I want you to know I have met a 17 year survivor of OVCA!! She is currently late stage, not sure what stage when first diagnosed. But she was diagnosed when she gave birth to her 3rd child. that child just went for her driver's test last week! So as you know there is hope. Hang in there and we'll keep thinking good thoughts for you.

    Mary Carol
  • msfanciful
    msfanciful Member Posts: 559
    #11
    ten101 said:

    Keep fighting
    Sharon, I know you will keep fighting as I have read many of your posts. I want you to know I have met a 17 year survivor of OVCA!! She is currently late stage, not sure what stage when first diagnosed. But she was diagnosed when she gave birth to her 3rd child. that child just went for her driver's test last week! So as you know there is hope. Hang in there and we'll keep thinking good thoughts for you.

    Mary Carol

    Thanks To All of You Beautiful Ladies!
    Hello everyone,

    I went out today to just keep myself super preoccupied to avoid thinking of my doctor visit for Tuesday. The day still felt as if it just dragggged on.

    Nevertheless; When I logged on to my surprise, there were sooo many answers for me to review, this is the most AWESOME group of ladies I've ever known. You all have shown me to just throw out the negative stuff and look at all of the positive stories around me as well., and somehow I keep forgetting the multitude of success stories too! Thank you for reminding me because the negative bug almost had me.

    I'm going to get a good night rest and be ready to tackle tomorrow no matter what!

    The 17 year survivor...wouldn't we all love to claim THAT title!

    I,m going to read your positive posts over and over tonight until I fall asleep with positive thoughts in my dream? LOL!

    I love each and everyone of you and am so happy to have you all as inspirations!

    Thank you, thank you, thank you,

    Love Sharon
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #12
    msfanciful said:

    Thanks To All of You Beautiful Ladies!
    Hello everyone,

    I went out today to just keep myself super preoccupied to avoid thinking of my doctor visit for Tuesday. The day still felt as if it just dragggged on.

    Nevertheless; When I logged on to my surprise, there were sooo many answers for me to review, this is the most AWESOME group of ladies I've ever known. You all have shown me to just throw out the negative stuff and look at all of the positive stories around me as well., and somehow I keep forgetting the multitude of success stories too! Thank you for reminding me because the negative bug almost had me.

    I'm going to get a good night rest and be ready to tackle tomorrow no matter what!

    The 17 year survivor...wouldn't we all love to claim THAT title!

    I,m going to read your positive posts over and over tonight until I fall asleep with positive thoughts in my dream? LOL!

    I love each and everyone of you and am so happy to have you all as inspirations!

    Thank you, thank you, thank you,

    Love Sharon

    I may be too late for
    I may be too late for tonight's pick-me-up, but I talked to my friend this evening, whose next-door neighbor is an 11 year survivor, diagnosed at stage 3c. Her name (the OVCA patient) is Kathy and she uses the same Gyn/Oncologist as me. I am going to see if I can talk her into joining the group, but she is so busy these days......working full-time, etc.
  • leesag
    leesag Member Posts: 621 Member
    #13
    Hissy_Fitz said:

    I may be too late for
    I may be too late for tonight's pick-me-up, but I talked to my friend this evening, whose next-door neighbor is an 11 year survivor, diagnosed at stage 3c. Her name (the OVCA patient) is Kathy and she uses the same Gyn/Oncologist as me. I am going to see if I can talk her into joining the group, but she is so busy these days......working full-time, etc.

    Survivors
    I know a stage III 10 year survivor! All of these survivor stories warm my heart and lift my spirits!

    :)

    Leesa
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #14
    msfanciful said:

    Thanks To All of You Beautiful Ladies!
    Hello everyone,

    I went out today to just keep myself super preoccupied to avoid thinking of my doctor visit for Tuesday. The day still felt as if it just dragggged on.

    Nevertheless; When I logged on to my surprise, there were sooo many answers for me to review, this is the most AWESOME group of ladies I've ever known. You all have shown me to just throw out the negative stuff and look at all of the positive stories around me as well., and somehow I keep forgetting the multitude of success stories too! Thank you for reminding me because the negative bug almost had me.

    I'm going to get a good night rest and be ready to tackle tomorrow no matter what!

    The 17 year survivor...wouldn't we all love to claim THAT title!

    I,m going to read your positive posts over and over tonight until I fall asleep with positive thoughts in my dream? LOL!

    I love each and everyone of you and am so happy to have you all as inspirations!

    Thank you, thank you, thank you,

    Love Sharon

    I am keeping you in my
    I am keeping you in my prayers, along with with all my "OVCA" board friends. There are so many more treatments to try and more we haven't even heard about yet! Hang in there: I am sending you warm, positive thoughts for your doctor appointment. Keep fighting Sharon, never give up.
    Warm bear hugs,
    MK
  • msfanciful
    msfanciful Member Posts: 559
    #15
    MK_4Dani said:

    I am keeping you in my
    I am keeping you in my prayers, along with with all my "OVCA" board friends. There are so many more treatments to try and more we haven't even heard about yet! Hang in there: I am sending you warm, positive thoughts for your doctor appointment. Keep fighting Sharon, never give up.
    Warm bear hugs,
    MK

    Next Plan of Attack!
    Hello All,

    I want to thank everyone again for your support and all of the wonderful stories of long-term ovca suriviors!

    After seeing the oncologist; we pondered over several choices of treatments to try and decided that starting Monday, I will begin a once-a-week regimen of taxol for 3 weeks...one the 3rd week of chemo I will also see my doctor again, have a ca-125 reading and go from there. Is it naive to think this "wait and see" world will ever end for us?

    But you all are right; I guess God really doesn't give us more than we can handle, because we overcome one challange after the next and continue to give thanks for the lives we have because it really can be much worse.

    I asked about options to have surgery to remove the para-aortic lymph-nodes involved; my two concerning ones are situated right in front of my lower spine (but it's definitely too risky to operate because they are also on the huge artery that runs right to the heart...soooo.

    Nevertheless, I am happy to even have options and not the other way around; I am thankful and ready to face another day.

    God bless you all (his angels),

    Sharon
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #16
    msfanciful said:

    Next Plan of Attack!
    Hello All,

    I want to thank everyone again for your support and all of the wonderful stories of long-term ovca suriviors!

    After seeing the oncologist; we pondered over several choices of treatments to try and decided that starting Monday, I will begin a once-a-week regimen of taxol for 3 weeks...one the 3rd week of chemo I will also see my doctor again, have a ca-125 reading and go from there. Is it naive to think this "wait and see" world will ever end for us?

    But you all are right; I guess God really doesn't give us more than we can handle, because we overcome one challange after the next and continue to give thanks for the lives we have because it really can be much worse.

    I asked about options to have surgery to remove the para-aortic lymph-nodes involved; my two concerning ones are situated right in front of my lower spine (but it's definitely too risky to operate because they are also on the huge artery that runs right to the heart...soooo.

    Nevertheless, I am happy to even have options and not the other way around; I am thankful and ready to face another day.

    God bless you all (his angels),

    Sharon

    Sharon...
    I had two enlarged
    Sharon...

    I had two enlarged aortic lymph nodes at the time of surgery. Mine, too, were inoperable. When I had my last CT scan, they were no longer enlarged.

    Were your lymph nodes biopsied? Mine weren't, but like my doctor said, sometimes an enlarged lymph node is JUST an enlarged lymph node. In other words, not cancer.

    My doctor does the once-a-week Taxol for recurring OVCA, too, so I think you are probably getting "gold standard" care. If I fall off the remission wagon during or shortly after the monthly Taxol maintenance, I doubt I would be eligible for more Taxol and will probably have to go on something else. One of the downsides to this particular regimen.

    Wishing you the best of luck, Ms Fanciful. Will we ever get past "wait and see"? Probably not, but it beats the hell out of "dead and buried", don't 'cha think?

    Carlene
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #17
    msfanciful said:

    Next Plan of Attack!
    Hello All,

    I want to thank everyone again for your support and all of the wonderful stories of long-term ovca suriviors!

    After seeing the oncologist; we pondered over several choices of treatments to try and decided that starting Monday, I will begin a once-a-week regimen of taxol for 3 weeks...one the 3rd week of chemo I will also see my doctor again, have a ca-125 reading and go from there. Is it naive to think this "wait and see" world will ever end for us?

    But you all are right; I guess God really doesn't give us more than we can handle, because we overcome one challange after the next and continue to give thanks for the lives we have because it really can be much worse.

    I asked about options to have surgery to remove the para-aortic lymph-nodes involved; my two concerning ones are situated right in front of my lower spine (but it's definitely too risky to operate because they are also on the huge artery that runs right to the heart...soooo.

    Nevertheless, I am happy to even have options and not the other way around; I am thankful and ready to face another day.

    God bless you all (his angels),

    Sharon

    Hi sharon
    You talk such sense when you say God doesan't give us more than we can handle. I can certainly relate to that as I have had alot of stress and trauma in the last past 2 years and it was one thing AFTER ANOTHER not all at once. This coping mechanism only lasts so long and then something has to give - usually your health!!!!

    I so hope this next treatment works for you.We do have to take each day as it comes and sometimes it doesn't seem fair that one person has to suffer this much all of the time but I think your day will come soon. My friend said that to me - "your day will come" we just have to battle on until it does.

    Keep strong Tina xxx

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