New Member

jane65
jane65 Member Posts: 277
edited March 2014 in Ovarian Cancer #1
Hi Ladies,
I'm a new member to this board, I need your support and help as I go throught this horrible journey, with all of you.
I was diagnosed in 2007 and have pretty much been on chemo since then, with only a 3-4 month remission,
Optimal debulking surgery, I was staged 4B, grade 3 epithelial OVCA which had metastasized to my lymph nodes.
I had a chest port installed, and started carbo/taxol. I had the full series of treatments, and after a very short remission, my CA125 began climbing again. I've been on Topotecan for 10 months, and my CA has dropped, and my lymph nodes have shrunk.
I'll write more but I wanted to say Hi, and I hope you're all having a Happy Mother's Day
Good health to all of you.
Jane65

Comments

  • Bstrange
    Bstrange Member Posts: 87
    #2
    Welcome, Jane
    My prayers are with you. You are a strong woman. Hold on to God.
    B
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #3
    Welcome!!
    Hi Jane,
    You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support. Please come here as often as you want.
    I wouldn't know what to do with out my friends here.It's an awesome bunch of "Teal Warriors".
    Hugs and Prayers, Terry
  • LPack
    LPack Member Posts: 645
    #4
    Welcome
    Welcome Jane,

    This is a great support group. I just love it!

    And Mother's Day was great. All four kids here and 3 of our grandkids. One still in the hospital after birth last Monday with Strep B virus, but she gets to come home tomorrow night without any complications, Praise the Lord!

    Looking forward to getting to know you,
    Libby ☺
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    Welcome and ask all you want
    Dear Jane65, we never like to add a new member but we are all grateful to have someone to share our experiences with. I think it really helps to know you are not alone. I am also Stage IV epithelial OVCA which had metastasized to my spleen and liver. (((Hugs and prayers))) Saundra
  • jane65
    jane65 Member Posts: 277
    #6
    Bstrange said:

    Welcome, Jane
    My prayers are with you. You are a strong woman. Hold on to God.
    B

    Thanks
    Thanks B, I appreciate your welcome, and I expect to have a long relationship with the ladies on this forum, I love your nickname... Jame
  • jane65
    jane65 Member Posts: 277
    #7
    ladyjogger31 said:

    Welcome!!
    Hi Jane,
    You will definitely find this a place to share your ups and downs, ask questions and help others. These are amazing woman here full of encouragement, enthusiam, compassion and support. Please come here as often as you want.
    I wouldn't know what to do with out my friends here.It's an awesome bunch of "Teal Warriors".
    Hugs and Prayers, Terry

    Thanks Terry
    Thanks for your welcome Terry, I can see that you have found a group of sisters that you have a wonderful relationship with. We all need each other's support and help on this horrible journey. A place to vent, and seek advice with ladies in similar situations who will "get it". Hugs back, Jane
  • jane65
    jane65 Member Posts: 277
    #8
    LPack said:

    Welcome
    Welcome Jane,

    This is a great support group. I just love it!

    And Mother's Day was great. All four kids here and 3 of our grandkids. One still in the hospital after birth last Monday with Strep B virus, but she gets to come home tomorrow night without any complications, Praise the Lord!

    Looking forward to getting to know you,
    Libby ☺

    Libby
    Thanks Libby,
    I hope your little one comes home, and has a wonderful, long healthy life. The same to all your kids, and grandkids. You're truly blessed.
    I'm looking forward to getting to know you as well.

    Jane
  • jane65
    jane65 Member Posts: 277
    #9
    saundra said:

    Welcome and ask all you want
    Dear Jane65, we never like to add a new member but we are all grateful to have someone to share our experiences with. I think it really helps to know you are not alone. I am also Stage IV epithelial OVCA which had metastasized to my spleen and liver. (((Hugs and prayers))) Saundra

    Thanks Saundra
    Hi Saundra, thanks for the warm welcome.
    I guess since we're both 4B, that makes our journey a bit more difficult. Our oncologists will use every bit of knowledge to do the best for us, I know that.

    I'm sure we'll do a lot of talking as time goes on, best wishes for good health.
    Jane
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #10
    Welcome
    Dear jane, welcome ~ sorry you have to join us but glad you found us. The women here are amazing and so supportive. We rest in each others prayers and support when weary, we share our ups and downs, we lock our hands together and carry those that are weary. I know I am blessed to be here and proud to be in this group with all of these amazing Teal Warriors.

    So now sending up prayers for you that the topotecan continues to work and gives you another remission. Hugs ♥ Prayers Bonnie
  • jane65
    jane65 Member Posts: 277
    #11
    BonnieR said:

    Welcome
    Dear jane, welcome ~ sorry you have to join us but glad you found us. The women here are amazing and so supportive. We rest in each others prayers and support when weary, we share our ups and downs, we lock our hands together and carry those that are weary. I know I am blessed to be here and proud to be in this group with all of these amazing Teal Warriors.

    So now sending up prayers for you that the topotecan continues to work and gives you another remission. Hugs ♥ Prayers Bonnie

    Thanks Bonnie
    Hi Bonnie, that was such a sweet and caring post, thank you for your good wishes.

    I feel welcome and will be supportive to the wonderful ladies on the board, as well.

    I was misdiagnosed for 6 months by my previous internist, he kept telling me that my 4 OVCA symptoms were side affects of my arthritis drug. I lost out on 6 months of cancer treatments, and am now with advanced cancer, staged 4B.

    I wish you good health, and peace.
    Jane
  • saundra
    saundra Member Posts: 1,370 Member
    #12
    jane65 said:

    Thanks Bonnie
    Hi Bonnie, that was such a sweet and caring post, thank you for your good wishes.

    I feel welcome and will be supportive to the wonderful ladies on the board, as well.

    I was misdiagnosed for 6 months by my previous internist, he kept telling me that my 4 OVCA symptoms were side affects of my arthritis drug. I lost out on 6 months of cancer treatments, and am now with advanced cancer, staged 4B.

    I wish you good health, and peace.
    Jane

    Yes'
    Mine was stress induced bowel symptoms. Internist missed it too. I finally demanded to see a gastroenteroligist and he did the diagnosis. We Stage IV's are pretty much with the same story.
    On with the fight. Saundra
  • jane65
    jane65 Member Posts: 277
    #13
    saundra said:

    Yes'
    Mine was stress induced bowel symptoms. Internist missed it too. I finally demanded to see a gastroenteroligist and he did the diagnosis. We Stage IV's are pretty much with the same story.
    On with the fight. Saundra

    Saundra
    Hi Saundra,
    Sorry it took me so long to reply, but I've been dealing with a virus.

    I had chemo on Monday, but I knew the symptoms were not my usual side affects of chemo.

    I feel better today, just tired but that could also be the chemo.

    Are you having chemo now, and if you are may I ask which one you are getting?

    I believe I mentioned that I've been on Topotecan for 10 months, and if the scans and CA I'll have the end of this month, show it's still working, we'll probably keep me on it.

    My oncologist and I would really like me to take a break, so that my bone marrow could recover and start working completely on it's own. When my HGB and RBC are low, I get an Aranesp shot, and that's about once a month.

    The problem is that he doesn't know if Topo. would start to work again if we stopped, and also the cancer would have a chance to spread and grow without chemo.

    We'll make a decision after the scans and CT results come back June 2nd.

    I was so angry at my internist that I had made an appointment, and told him that he has shortened my life, and if another woman comes in with the same 4 symptoms I had, take them seriously and get them to a GYN!
    He said he was sorry, and I walked out.

    I'll stop now, I'm still feeling weary, have a good evening.
    Jane
  • saundra
    saundra Member Posts: 1,370 Member
    #14
    jane65 said:

    Saundra
    Hi Saundra,
    Sorry it took me so long to reply, but I've been dealing with a virus.

    I had chemo on Monday, but I knew the symptoms were not my usual side affects of chemo.

    I feel better today, just tired but that could also be the chemo.

    Are you having chemo now, and if you are may I ask which one you are getting?

    I believe I mentioned that I've been on Topotecan for 10 months, and if the scans and CA I'll have the end of this month, show it's still working, we'll probably keep me on it.

    My oncologist and I would really like me to take a break, so that my bone marrow could recover and start working completely on it's own. When my HGB and RBC are low, I get an Aranesp shot, and that's about once a month.

    The problem is that he doesn't know if Topo. would start to work again if we stopped, and also the cancer would have a chance to spread and grow without chemo.

    We'll make a decision after the scans and CT results come back June 2nd.

    I was so angry at my internist that I had made an appointment, and told him that he has shortened my life, and if another woman comes in with the same 4 symptoms I had, take them seriously and get them to a GYN!
    He said he was sorry, and I walked out.

    I'll stop now, I'm still feeling weary, have a good evening.
    Jane

    Dear Jane,
    I had the same conversation with mine and told him that he could not trust the reader of the sonargram I had in his office and that I would not be seeing him again. He said he was sorry. I hung up. I was not so angry with my gyn that I had not seen in a year because all my symptoms developed in the year between my regular check up with him, but was seeing the internist every other month. He got the the head of the dept. of Texas Oncology for my gyn/onc/surgeon and I have been very pleased.

    I had four doses of Taxol/Carbo before surgery, five after surgery. Then even though the CA125 was below 10 I was offered a 12 month regimen of low dose maintence taxol. I did 11 of those and the CA125 started inching up. At that point, I had a choice of taking an anti-estrogen pill (Over $300 a month) that works in about 20-30% to give me a rest from chemo. I have been on that since last October and it is holding it back some. This week it was 82 and I will continue it for at least another month or until the CT scan or physical exam show something. Right now only the rise in CA125 is indicating. I am fighting diverticulitis
    for the last two weeks but CT showed much improvement in that gut infections. It is as bad as chemo!!!
    And it does cause the CA125 to rise...went up to 142 week before last.

    I have not had Topo or gymsar yet. But any infection or virus is doubly hard on we who fight the fight.
    I have been lucky that my blood counts bounce back inbetween doses. The anti estrogen is easy to take but the side effect is leaching bone density so I am now on Fosamax which I tolerate pretty good.

    Hang in there and just take it one day at a time. (((HUGS & PRAYERS))) Saundra
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #15
    saundra said:

    Dear Jane,
    I had the same conversation with mine and told him that he could not trust the reader of the sonargram I had in his office and that I would not be seeing him again. He said he was sorry. I hung up. I was not so angry with my gyn that I had not seen in a year because all my symptoms developed in the year between my regular check up with him, but was seeing the internist every other month. He got the the head of the dept. of Texas Oncology for my gyn/onc/surgeon and I have been very pleased.

    I had four doses of Taxol/Carbo before surgery, five after surgery. Then even though the CA125 was below 10 I was offered a 12 month regimen of low dose maintence taxol. I did 11 of those and the CA125 started inching up. At that point, I had a choice of taking an anti-estrogen pill (Over $300 a month) that works in about 20-30% to give me a rest from chemo. I have been on that since last October and it is holding it back some. This week it was 82 and I will continue it for at least another month or until the CT scan or physical exam show something. Right now only the rise in CA125 is indicating. I am fighting diverticulitis
    for the last two weeks but CT showed much improvement in that gut infections. It is as bad as chemo!!!
    And it does cause the CA125 to rise...went up to 142 week before last.

    I have not had Topo or gymsar yet. But any infection or virus is doubly hard on we who fight the fight.
    I have been lucky that my blood counts bounce back inbetween doses. The anti estrogen is easy to take but the side effect is leaching bone density so I am now on Fosamax which I tolerate pretty good.

    Hang in there and just take it one day at a time. (((HUGS & PRAYERS))) Saundra

    Hello.
    I just read through some of your comments and know how hard the battle is.... but stay strong. There are so many people on here who have been helped from sharing with one another. You are in my prayers! God Bess You, Tricia
  • Susan523
    Susan523 Member Posts: 231 Member
    #16
    Welcome & sorry that you're here....
    Jane,

    I am so sorry to meet under these horrid circumstances. I think you will find this site very resourceful and very supportive. There are many special ladies here (and men!) :-)

    I was diagnosed in May, 2006, and, like you, I have had very short remissions, and am currently on my 3rd round of chemo; this one being Gemzar. My 1st round was Taxol/Carbo, and my 2nd round was IP Chemo w/Cisplatin (harsh!). I am stage 3c. I have 2 more months to complete this round; and I'm hoping that I'll get a longer remission this time!

    Take care of yourself, and welcome.
    (((Hugs)))
    ~Susan
  • Kgirl
    Kgirl Member Posts: 45
    #17
    Hello Jane
    Jane,

    You and I have much the same story. I was diagnosed IIIc in May 2008. Completed taxol/carboplatin regimen in December 2008. Was in remission about 3 months. Started Avastin/topotecan this May. Hope to be on it a long time. It is very easy on me except for the white counts which are always a problem. Ca-125 was 4500 when initially diagnosed. Went to 212 the 9th of May. After the one treatment, it is now down to 127. PET scan showed it only in 2 of the para-aortic lymph nodes. I am working 20 hours a week and so far it is fine.

    Jane, I hope you continue to be stable on topotecan and I wish you the best. I know that I was angry, like many women, about my delayed diagnosis. I've learned to let it go and forgive myself as well for not seeking medical treatment earlier.

    Kathy

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