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Kgirl
Kgirl Member Posts: 45
edited March 2014 in Ovarian Cancer #1
Hi,
I have been been feeling isolated and alone in fighting my battle against ovarian cancer. I live in a relatively small town and the only person I know with this disease in currently in hospice. I am 48 and survived breast cancer (stage 3) at age 40. I was diagnosed in April of this year, presenting with constipation and ascites. It took about 6 weeks to figure out what was going on. My initial CA-125 was 4500 and I was started on chemo with taxol/carboplatin since I was deemed inoperable with a 'frozen uterus'. The chemo was very effective. The ascites disappeared after my first treatment. My CA-125 fell to 180 after two cycles. I did have difficulty with my third cycle and it had to be cancelled twice because of low counts. I had shots of both neulasta and neupogen. My surgery was scheduled for the end of July but my blood counts were too low that morning and it was cancelled. My oncologist and I had to find a new surgeon to do the surgery since the first was now refusing to operate until I completed 6 cycles of chemo. I did not want to do this and I finally had surgery in late August. I had 3 3cm tumors removed as well as the omenteum which had <1 cm tumor implants. After surgery the CA-125 was 24. I have been switched to weekly chemo in hopes that I can keep to the schedule without all the delays I had earlier. I got through 3 weekly treatments, had a week off, and then went back this Tuesday to start the next cycle. Unfortunately, the WBC was 1.9 and the platelet count is again diving below 100. This was devastating and I cried all the way home. I so afraid that this is going to affect my prognosis (which isn't great anyway) and this has been such an emotional roller coaster. I have gone from no hope to at least thinking I had a chance. Has anybody else had this difficulty?

Kathy

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    DON'T BE DISCOURAGED
    Kathy:
    This is an unfortunate way to meet, but we're grateful there's a place to 'vent' and to find support and hope. I'm glad you've decided to join us.

    Don't know if you've had time to browse the history of the discussion board, but you'll find many, many women here who have fought and continue to fight this awful disease. There are so many options, thus much hope.

    Is your doctor a gynecologic oncologist? That can make a lot of difference. Why didn't they do a complete hysterctomy? I know you're discouraged about the low counts, so have they given you any shots (Nulasta, etc.) to help bring them up? My doctor also started me on iron supplements. Quite frankly, I took liver extract instead (with his approval) and it worked wonders. Your CA125 numbers came down remarkably well, which says a lot for the success of the surgery and chemo that you were able to endure.

    Finding out you have cancer already puts you on an emotional rollercoaster, let alone the subsequent surgeries, treatments, side affects, etc. Are there maybe some support groups in your area that your doctor can recommend? Also check on this website for that as well. If you're the type of person who benefits from actual personal contact to talk about this, there may be something out there for you. As for us here, you can visit anytime. There's also a chat room, where you can communicate in 'real time' and maybe find some solace there.

    In the meantime, we're here for you.

    (((HUGS))) and Prayers,
    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    Welcome
    Hi Kathy, sorry you have to join the group too. You will find everyone to be full of helpful information and so kind, caring and supportive. Hugs N Prayers Bonnie
  • Kgirl
    Kgirl Member Posts: 45
    #4
    mopar said:

    DON'T BE DISCOURAGED
    Kathy:
    This is an unfortunate way to meet, but we're grateful there's a place to 'vent' and to find support and hope. I'm glad you've decided to join us.

    Don't know if you've had time to browse the history of the discussion board, but you'll find many, many women here who have fought and continue to fight this awful disease. There are so many options, thus much hope.

    Is your doctor a gynecologic oncologist? That can make a lot of difference. Why didn't they do a complete hysterctomy? I know you're discouraged about the low counts, so have they given you any shots (Nulasta, etc.) to help bring them up? My doctor also started me on iron supplements. Quite frankly, I took liver extract instead (with his approval) and it worked wonders. Your CA125 numbers came down remarkably well, which says a lot for the success of the surgery and chemo that you were able to endure.

    Finding out you have cancer already puts you on an emotional rollercoaster, let alone the subsequent surgeries, treatments, side affects, etc. Are there maybe some support groups in your area that your doctor can recommend? Also check on this website for that as well. If you're the type of person who benefits from actual personal contact to talk about this, there may be something out there for you. As for us here, you can visit anytime. There's also a chat room, where you can communicate in 'real time' and maybe find some solace there.

    In the meantime, we're here for you.

    (((HUGS))) and Prayers,
    Monika

    New to this board
    Monika,

    Thanks for the reply to my original message. I should let you know that I did have a TAH and removal of the fallopian tubes and ovaries as well by the gynecological oncologist. We have no such specialists here in town so I traveled to Portland to have it done. Other than that, my local oncologist directs my treatment. She and I know each other too well, since she was my oncologist for my breast cancer bout as well. I have 4 injections of Neupogen scheduled this week and I am scheduled for chemo next Tuesday if the counts improve. We do have local support groups, but not an ovarian cancer one. I would have to attend the general cancer support group sponsored by the ACS. I don't feel I would get much from a general group but I probably should try it at least once. I did get some good news - the CA-125 is now 11.

    Kathy
  • Kgirl
    Kgirl Member Posts: 45
    #5
    BonnieR said:

    Welcome
    Hi Kathy, sorry you have to join the group too. You will find everyone to be full of helpful information and so kind, caring and supportive. Hugs N Prayers Bonnie

    new to this board
    Thanks Bonnie. I appreciate your kind words. Please be thinking of me next Tuesday - I am scheduled for chemo if my counts improve.

    Kathy
  • kris43
    kris43 Member Posts: 275
    #6
    life
    Kathy - I am so glad you found us. I remember so well the roller coaster of emotions. I too had at least 3 times that my treatments were delayed because of blood count issues. I would just sob and felt as if I couldn't even do treatment right. It was horrible to say the least. So I can feel your pain.

    I am 44 and diagnosed with Stage IIIC in July of 2007. I am about 9 1/2 months in remission - but even today I am dealing with depression and fear of the unknown. I can only imagine if you've already battled so hard with the breast cancer that anything related to cancer itself must be overwhelming.

    Please keep reading the posts and writing any time you need a question answered, need to vent, or just want to know that you are not alone. The women here are wonderful.

    Keeping you close in my thoughts.
    Kris
  • floridajo
    floridajo Member Posts: 480
    #7
    Hello
    Welcome to the group!! Wish we could have met under different circumstances. You'll love the board. I don't go to personal support groups,I like the forums like this one and there are many out there.

    I know of your fear,and I understand. It's the same way when you have a recurrence coming on and you know it,but they keep scheduling more tests,taking up more time when you should be on chemo...I am happy to tell you even a small time off chemo when you should be getting your chemo will not effect you too much. Your ca-125 is great and shows that you handle chemo well..a very positive thing for us.

    Keep in contact and feel free to vent at any time~~~~Joanne
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #8
    Welcome
    Welcome, so sorry to meet this way.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.
    Hugs and Prayers
    Terry
  • gerimay132003
    gerimay132003 Member Posts: 5
    #9
    Kgirl said:

    new to this board
    Thanks Bonnie. I appreciate your kind words. Please be thinking of me next Tuesday - I am scheduled for chemo if my counts improve.

    Kathy

    hope for future
    Hi Kgirl I went thru simular stuff while going through my cancer treatments. And now am a 5 year survivor of stage 5 ovarian /uterian cancers. I was so scared as the cancer was heritary in my family and I saw the female members of my family fall to this desease and i was sure i was next,but I found help on this site and other web sites sponcered by ACS. Also if you have any questions ask the drs and keep asking til you get the awnsers or you at least understand what they are talking about. love and prayers to all
  • kayandok
    kayandok Member Posts: 1,202 Member
    #10
    welcome
    Hi Kathy, and welcome to the club none of us wanted to belong to! This group has a lot of kind, caring and informative group of women. You have come to the right place.

    I had OVCA 3C, dx 6-06, 3 surgeries (including SLS) and 10 1/2 doses of chemo. Since I live in Japan where there are very few OVCA patients, especially advanced, I really relied on the OVCA boards and the information I found there. I was discouraged many times, like you have been. It goes with the territory of being a cancer survivor.My theory is that there will always be something negative to concentrate on (nausea, dx, blood count etc etc) so why not find something positive to think about? It usually works, along with a lot of prayer and support of-course.

    Your CA125 looks great! Keep your chin up and go for it girl!

    Kathleen :)
  • Kgirl
    Kgirl Member Posts: 45
    #11
    New to this board
    I want to thank everyone for their support this week. I feel stronger again and am able to face the upcoming week whatever the result. I have recently gone back to work part time and that has helped my outlook as well. It is good to be busy! Ironically, I am a med tech and one of my duties, when I am in Chemistry, is to result the CA-125 tests. It makes me sad when I see an elevated one and I wonder about the woman on the other end of that test result.

    Kathy
  • carol2dogs
    carol2dogs Member Posts: 132
    #12
    Welcome
    Kathy,
    I just want to add my welcome to the others - and echo their comments. I also live in a small rural town, and I know that finding a support group anywhere close is a near impossibility. I would recommend using this group as your support group. I don't know about you, but I am fairly recent to the small town experience and it helps greatly to have this support group here that helps me feel more like I have access to resources again.
    I am going through my first recurrence (diagnosed 11/05) and will have my 9th chemo of this cycle next Thursday. I had several chemos of my first cycle of treatments delayed due to low blood counts - and yes, I felt like a failure too. The delays really did not affect anything other than my emotional well-being. As others have said, there are treatments for the low blood counts, such as Neulasta and Nupogena, and they usually work really well. This disease is nasty and un-predictable, but there is always hope. Our bodies are stronger than we think they are.
    Sometimes we can also be stubborn about admitting we are having difficulties. I have been working full-time plus some killer hours, in spite of a great deal of chemo-related fatigue. I thought I could just keep pushing myself, but I learned better this week. I sent someone a few levels up from me an email that was full of paranoia and unjustified anger, and I'll be paying for that mistake for quite a while. You can believe that I will be talking to my doc this week about adding some anti-depressants to my meds.
    Kathy, I'm sorry you have this disease, but welcome to the group. Please feel free to share and vent here. Sending you lots of hugs and prayers.
    Carol
  • saundra
    saundra Member Posts: 1,370 Member
    #13
    Kathy
    Nothing much that I can add that hasn't been said by the other ladies on this site. There is not a ovarian support group in my town either, so I have used this site for one. I'm addicted to it and check several times a day usually.
    Your CA125 decrease in numbers is really good. Mine did the same and I am told by my oncologist that this indicates that it is a good marker for me. That means that I will be starting chemo soon because my numbers have increased for the last 3 months after being below 10 for 11 months. The CT and physical do not show anything yet but we all know what is lurking in my abdomen so that helps get started on another chemo sooner.
    Come back often and share when you feel like it. (((Hugs and Prayers))) Saundra

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