I am new...told I have recurrent ovc

ocalalaurie
ocalalaurie Member Posts: 34 Member
in Ovarian Cancer #1
Hello. I've read a lot of posts here, and my heart is warmed by the friendly voices. I am 37 and finished my chemo in November for stage2 ovc. Recently my Ca was rising, and a CT scan shows what my doctor says are lesions(?) in my abdominal cavity, they say I need to start treatment again in about 2-3 weeks. I also have a PET tomorrow.
I know I must sound vague...I guess I've tried not to think too much about it...never thought it would come back. Have really not been good at talking about it. I would like to know what to expect in the beginning of recurrent ovc...if that is even possible to answer. They said something about using diff chemo drugs because my cells are probably resistant to the platinums that were used before?
Thank you for listening and for any reply.

Comments

  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #2
    I am terribly sorry you have
    I am terribly sorry you have a recurrence. I have no experience with recurrences since mine has never gone completely away. There are lots of ladies here though that can help you. We are in your corner and please feel free to post away.

    If your name means your are in Ocala, Florida.. SO AM I!!! If you ever want to get together to commiserate let me know. Talking does help.

    Good luck Laurie,

    Kate
  • survivingovca
    survivingovca Member Posts: 23
    #3
    hope
    I'm sorry that you are facing this diagnosis. I know that it feels overwhelming. I'm similar to Disneynutt, in that I had constant cancer. Mine lasted through two rounds of chemo (carbo/taxol, then doxil), and beyond. I am platinum resistant (I grew tumors throughout taxol/carbo). I was told by two different gyne/oncs that I would be in some type of chemo treatment the rest of my (shortened) life. Well, they were WRONG. :) I found a clinical trial that was a great "fit" for me with my third gyne/onc. I have been without treatment now for 1 1/2 years, and feel almost normal (except for some residual tiredness and joint pain from past chemos- I'd say I'm at 90%). Try to take it one day at a time, and try not to think about the future too much. Worrying does us no good.

    Talking or 'virtual talking' about things has helped me immensely. Trust your body and if you don't like what your current doctor is saying - get more opinions! That was how I found my extra time and hope.

    (ps - the two prior doctors told me I was not a candidate for additional surgery - the third doc was able to perform another successful debulking, and subsequently put me into "no evidence of disease" for the past 1 1/2 years). This is not a death sentence. Big hugs!

    pps - I was diagnosed at 40. I celebrate my 44th birthday this weekend! :)
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #4
    survivingovca said:

    hope
    I'm sorry that you are facing this diagnosis. I know that it feels overwhelming. I'm similar to Disneynutt, in that I had constant cancer. Mine lasted through two rounds of chemo (carbo/taxol, then doxil), and beyond. I am platinum resistant (I grew tumors throughout taxol/carbo). I was told by two different gyne/oncs that I would be in some type of chemo treatment the rest of my (shortened) life. Well, they were WRONG. :) I found a clinical trial that was a great "fit" for me with my third gyne/onc. I have been without treatment now for 1 1/2 years, and feel almost normal (except for some residual tiredness and joint pain from past chemos- I'd say I'm at 90%). Try to take it one day at a time, and try not to think about the future too much. Worrying does us no good.

    Talking or 'virtual talking' about things has helped me immensely. Trust your body and if you don't like what your current doctor is saying - get more opinions! That was how I found my extra time and hope.

    (ps - the two prior doctors told me I was not a candidate for additional surgery - the third doc was able to perform another successful debulking, and subsequently put me into "no evidence of disease" for the past 1 1/2 years). This is not a death sentence. Big hugs!

    pps - I was diagnosed at 40. I celebrate my 44th birthday this weekend! :)

    @ survivingovca
    I am interested to know what trial you did, please could you let me know , your story is so inspiring.

    Thanks Liz x
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #5
    Hi ,this is what happened to
    Hi ,this is what happened to my mum, she had carbo taxol , finished the treatment , went for a scan , then received a letter to tell the there were still signs of cancer :( how ever she is now doing doxil and it appears to be working her ca125 started At 240 it is now 36 just before her third infusion, happy days, there is hope, get those boxing gloves back on and fight with everything that you have xxxx Liz
  • Lea19
    Lea19 Member Posts: 29
    #6
    Laurie,

    Sorry you had such a short break:( I have had many reoccurances. My first two times I did the Taxol/Carbo combo - I believe that want you to go six months without any "activity" to feel as though that drug combo was successful. Hopefully this next time they will get it all. Hopefully the PET will show only a small bit of activity.

    Good Luck!
  • jbeans888
    jbeans888 Member Posts: 313
    #7
    wanted to welcome you to the
    wanted to welcome you to the group. I haven't had a recurence because I am still in my first treatment. My doctor sent my tumors to get a test called chemo response testing. This is when they test your tumor avaunt the different types of there are to see which ones your tumor response to best. It takes a month to get the results back. They started me on chemo before they even got the results back Luckily I am getting the second best chemo that responded to my tumor. Maybe you can have that test done.

    I am in Gainesville Fl! Close enough. Do you get treatment at Shands?
  • antcat
    antcat Member Posts: 270
    #8
    Told about recurrent ovc
    Hi, I, too, was diagnosed with Stage 2 ovc. I originally went almost a year and a half with no cancer, but it came back in 2008. I've had multiple surgeries and I never thought it would come back, especially since my original oncologist said after just the first treatment finished, "You're 100% cured". I don't know how he could have made such a statement after just 6 cycles of chemotherapy and no follow up CT scan, but he did. In fact, his medical technician said to me, he should have never said that. Anyway, keep optimistic, as I'm always told there are many chemo drugs out there which is something a person doesn't want to hear, they just hope their doctor can find the right combination. Good luck on your PET scan.
  • Unknown
    Unknown
    #9
    survivingovca said:

    hope
    I'm sorry that you are facing this diagnosis. I know that it feels overwhelming. I'm similar to Disneynutt, in that I had constant cancer. Mine lasted through two rounds of chemo (carbo/taxol, then doxil), and beyond. I am platinum resistant (I grew tumors throughout taxol/carbo). I was told by two different gyne/oncs that I would be in some type of chemo treatment the rest of my (shortened) life. Well, they were WRONG. :) I found a clinical trial that was a great "fit" for me with my third gyne/onc. I have been without treatment now for 1 1/2 years, and feel almost normal (except for some residual tiredness and joint pain from past chemos- I'd say I'm at 90%). Try to take it one day at a time, and try not to think about the future too much. Worrying does us no good.

    Talking or 'virtual talking' about things has helped me immensely. Trust your body and if you don't like what your current doctor is saying - get more opinions! That was how I found my extra time and hope.

    (ps - the two prior doctors told me I was not a candidate for additional surgery - the third doc was able to perform another successful debulking, and subsequently put me into "no evidence of disease" for the past 1 1/2 years). This is not a death sentence. Big hugs!

    pps - I was diagnosed at 40. I celebrate my 44th birthday this weekend! :)

    This comment has been removed by the Moderator
  • survivingovca
    survivingovca Member Posts: 23
    #10
    unknown said:

    This comment has been removed by the Moderator

    O-Vax
    It was the O-Vax ovarian vaccine trial. They performed a second debulking to collect my tumors, and turned them into a vaccine. This was in the hope that they could "turn on" my immune system to recognize cancer and kill it. Here is the link for the trial information:

    http://clinicaltrials.gov/ct2/show/NCT00660101?term=ovax&rank=1

    Good luck!
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #11
    Disneynutt said:

    I am terribly sorry you have
    I am terribly sorry you have a recurrence. I have no experience with recurrences since mine has never gone completely away. There are lots of ladies here though that can help you. We are in your corner and please feel free to post away.

    If your name means your are in Ocala, Florida.. SO AM I!!! If you ever want to get together to commiserate let me know. Talking does help.

    Good luck Laurie,

    Kate

    Kate:
    Yes, I am in Ocala! What a small world :) I'm actually in Anthony...we have a small farm up here. Yes, would love to maybe get together sometime...Thank you so much for responding.
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #12
    survivingovca said:

    hope
    I'm sorry that you are facing this diagnosis. I know that it feels overwhelming. I'm similar to Disneynutt, in that I had constant cancer. Mine lasted through two rounds of chemo (carbo/taxol, then doxil), and beyond. I am platinum resistant (I grew tumors throughout taxol/carbo). I was told by two different gyne/oncs that I would be in some type of chemo treatment the rest of my (shortened) life. Well, they were WRONG. :) I found a clinical trial that was a great "fit" for me with my third gyne/onc. I have been without treatment now for 1 1/2 years, and feel almost normal (except for some residual tiredness and joint pain from past chemos- I'd say I'm at 90%). Try to take it one day at a time, and try not to think about the future too much. Worrying does us no good.

    Talking or 'virtual talking' about things has helped me immensely. Trust your body and if you don't like what your current doctor is saying - get more opinions! That was how I found my extra time and hope.

    (ps - the two prior doctors told me I was not a candidate for additional surgery - the third doc was able to perform another successful debulking, and subsequently put me into "no evidence of disease" for the past 1 1/2 years). This is not a death sentence. Big hugs!

    pps - I was diagnosed at 40. I celebrate my 44th birthday this weekend! :)

    Thank you so very much for
    Thank you so very much for your inspiration :)
    My first treatments were the taxol/carbo. My doctor did mention doxil as a next possibility...along with some others as well. I've been reading a lot on here regarding the different meds, etc. I have been also told that sometimes ovc can be more like a chronic illness, having periods of remission, recurrence, treatment and so on. I handled my first treatments very well. I have a very positive attitude and strong will. Other than losing my hair, I can't say it was that bad....well, most days! I do take one day at a time...that helps a lot.

    I would love to know about your clinical trial. I do like my doctors....feel very comfortable with them.

    Thank you again for sharing with me...and Happy Birthday!!! :)
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #13
    survivingovca said:

    O-Vax
    It was the O-Vax ovarian vaccine trial. They performed a second debulking to collect my tumors, and turned them into a vaccine. This was in the hope that they could "turn on" my immune system to recognize cancer and kill it. Here is the link for the trial information:

    http://clinicaltrials.gov/ct2/show/NCT00660101?term=ovax&rank=1

    Good luck!

    Thank you....I should have
    Thank you....I should have continued reading down the responses before asking! :)
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #14
    Mum2bellaandwilliam said:

    Hi ,this is what happened to
    Hi ,this is what happened to my mum, she had carbo taxol , finished the treatment , went for a scan , then received a letter to tell the there were still signs of cancer :( how ever she is now doing doxil and it appears to be working her ca125 started At 240 it is now 36 just before her third infusion, happy days, there is hope, get those boxing gloves back on and fight with everything that you have xxxx Liz

    Oh Thank you!!! It does
    Oh Thank you!!! It does sound like doxil is the go-to following recurrence after the carb/taxol, as I keep hearing/reading this. So happy for your mother and for you :) Yes, the boxing gloves are on!
    Thank you, Liz :)
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #15
    Lea19 said:

    Laurie,

    Sorry you had such a short break:( I have had many reoccurances. My first two times I did the Taxol/Carbo combo - I believe that want you to go six months without any "activity" to feel as though that drug combo was successful. Hopefully this next time they will get it all. Hopefully the PET will show only a small bit of activity.

    Good Luck!

    Thank you, Lea19 :)
    Yes,
    Thank you, Lea19 :)
    Yes, mine was taxol/carbo too. I will find out results of PET this week, and I am hopeful :) Thank you :)
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #16
    jbeans888 said:

    wanted to welcome you to the
    wanted to welcome you to the group. I haven't had a recurence because I am still in my first treatment. My doctor sent my tumors to get a test called chemo response testing. This is when they test your tumor avaunt the different types of there are to see which ones your tumor response to best. It takes a month to get the results back. They started me on chemo before they even got the results back Luckily I am getting the second best chemo that responded to my tumor. Maybe you can have that test done.

    I am in Gainesville Fl! Close enough. Do you get treatment at Shands?

    Thank you, jbeans888! Yes,
    Thank you, jbeans888! Yes, Gainesville is close to me! I had my surgery at Shands and my first treatments there too! I think this time though Im going to go to Ocala for trtmt, as it's closer/easier for me. Do you go to Shand's? Im assuming you do, since it is right there where you are. They are wonderful, and I love the new hospital. I will ask about that test this week. Maybe I'll see you up there sometime :)

    Thank you!!!
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #17
    antcat said:

    Told about recurrent ovc
    Hi, I, too, was diagnosed with Stage 2 ovc. I originally went almost a year and a half with no cancer, but it came back in 2008. I've had multiple surgeries and I never thought it would come back, especially since my original oncologist said after just the first treatment finished, "You're 100% cured". I don't know how he could have made such a statement after just 6 cycles of chemotherapy and no follow up CT scan, but he did. In fact, his medical technician said to me, he should have never said that. Anyway, keep optimistic, as I'm always told there are many chemo drugs out there which is something a person doesn't want to hear, they just hope their doctor can find the right combination. Good luck on your PET scan.

    Thank you antcat for sharing
    Thank you antcat for sharing with me. That is unfortunate that your doctor said that. My doctor was very upfront...telling me that there is a high chance of recurrence...that ovc is sometimes more like a chronic illness. I am thankful for her honesty, but I was also very hopeful that it wouldn't come back. Even with her honesty, I was very upset and shocked when it did return. I can only imagine how much more upset I would have been if my doctor had told me "you're cured".
    I am keeping positive....and finding this discussion board is now a big help too. It's been hard sometimes when not everyone "gets it".
    Thank you again for your encouragement :)
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #18
    I wanted to say thank you to
    I wanted to say thank you to everyone who replied to me...
    What a good feeling. I think this is the most I've ever talked about my illness, and I feel such a relief to get some of it out.
    I was so nervous when I first posted, and now I feel that I've found a safe place to go to when I need to "talk".
    thank you very much to everyone :)
  • ocalalaurie
    ocalalaurie Member Posts: 34 Member
    #19
    I wanted to say thank you to
    I wanted to say thank you to everyone who replied to me...
    What a good feeling. I think this is the most I've ever talked about my illness, and I feel such a relief to get some of it out.
    I was so nervous when I first posted, and now I feel that I've found a safe place to go to when I need to "talk".
    thank you very much to everyone :)
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #20
    ocalalaurie said:

    I wanted to say thank you to
    I wanted to say thank you to everyone who replied to me...
    What a good feeling. I think this is the most I've ever talked about my illness, and I feel such a relief to get some of it out.
    I was so nervous when I first posted, and now I feel that I've found a safe place to go to when I need to "talk".
    thank you very much to everyone :)

    welcome to the best site
    I am glad you are here and asking questions. You to are very young. I am sorry you have had a recurance. I just finished my tx for first reacurrece and I am now in remssion. I was on carbo/taxol for my intilal tx and it worked for me. Everyone is different and responf to the drugs. Yes here we an talk freely about our disease because we are going through the same thing. Sometimes family and friends just don't get it and have no answers. We are all sisters here...val

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