One year ago today

taiga
taiga Member Posts: 75
One year ago today I talked myself into believing that the mass on my ovary wasn’t cancer. When I woke up in the recovery room and looked at the time, I knew I was wrong and terror set in. I was diagnosed with stage 3a, grade 3, clear cell ovarian cancer. I prayed that I didn’t have any post-op complications and could make it to our daughter’s wedding a little over a week away. Thankfully I had none and the wedding went beautifully. Within the next 5 weeks I had ports installed, a collapsed lung, my brother’s wedding, our wedding anniversary and I turned 50! I signed up for a clinical trial and completed the chemo in December and will continue on Avastin every 3 weeks until November. My CA-125 is 7 and my scans have been clear.

I feel so very blessed to have made it through this year as well as I did. I have an incredible family, wonderful friends and an understanding, flexible employer. I vowed from day one, to not let this terrible disease define me, rob me of my spirit or take my sense of humor. I went through the normal cycle of emotions and ended up with being really mad!!! Mad that I had my well-woman exam and mammogram every year, that I worked out regularly, that I had no family history of cancer, had no clue what the symptoms of ovarian cancer were and yet, I still had this disease. One thing I have learned is that while I have no control over what happened, I do have control over how I react to it. I joined the board of a local not-for-profit, Gyn Cancer Alliance, and try to take every opportunity to educate women and their loved ones about ovarian cancer. I pray this time next year I can post that I have continued “NED”. Teal hugs to all of you brave, courageous women and thank you for all the support and answers I have gotten over the past year.

Comments

  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    I hope you repost this for
    I hope you repost this for many a more year. It is very hopeful. :-) Thank you for sharing it.
  • Rookerbird
    Rookerbird Member Posts: 100
    Question About Clinical Trial
    Thanks for sharing your great news!

    Can you please share more about the clinical trial you were in? Where was it? What chemo(s) did you take and how frequently?

    My diagnosis was also clear cell, and I have never been NED. Here's what I've tried:
    - 6 rounds of Taxol/Carboplatin
    - 6 weeks of daily radiation
    - Femara, a once-daily pill
    - 4 months with no treatment because tumors were stable and doctors were starting to think it was scar tissue; tumors grew like crazy during this time
    - 7 cycles of Doxil, which has shrunk the tumors
    - Doctor recently told me he expects me to always need chemo of some sort; in other words, no end to treatment

    I appreciate whatever information and insights you can provide!

    -Kathy
  • taiga
    taiga Member Posts: 75

    Question About Clinical Trial
    Thanks for sharing your great news!

    Can you please share more about the clinical trial you were in? Where was it? What chemo(s) did you take and how frequently?

    My diagnosis was also clear cell, and I have never been NED. Here's what I've tried:
    - 6 rounds of Taxol/Carboplatin
    - 6 weeks of daily radiation
    - Femara, a once-daily pill
    - 4 months with no treatment because tumors were stable and doctors were starting to think it was scar tissue; tumors grew like crazy during this time
    - 7 cycles of Doxil, which has shrunk the tumors
    - Doctor recently told me he expects me to always need chemo of some sort; in other words, no end to treatment

    I appreciate whatever information and insights you can provide!

    -Kathy

    Kathy:
    I am in GOG-0252, I

    Kathy:

    I am in GOG-0252, I beleive it is only open to women who are newly dx., haven't had any treatment yet. I live in Springfield, MO and get my treatment here. I had 6 rounds of taxel and cisplatin. I had IV taxol and Avastin on day 1, IP cisplatin day 2 and IP taxol day 3. I was glad I was randomly put in arm 3 - meaning I got the IP treatment. If I had ended up in an arm without IP therapy, I wasn't going to do the clinical trial. My doctor would have included IP therapy in my treatment. I was mainly interested in getting the Avastin. I hope I hit it from every angle and it's GONE.
  • kayandok
    kayandok Member Posts: 1,202 Member
    Congratulations!
    You are a fighter, I can tell and I'm so happy for you that your are NED.
    hugs,
    kathleen
  • kayandok
    kayandok Member Posts: 1,202 Member
    Congratulations!
    You are a fighter, I can tell and I'm so happy for you that your are NED.
    hugs,
    kathleen
  • Rookerbird
    Rookerbird Member Posts: 100
    taiga said:

    Kathy:
    I am in GOG-0252, I

    Kathy:

    I am in GOG-0252, I beleive it is only open to women who are newly dx., haven't had any treatment yet. I live in Springfield, MO and get my treatment here. I had 6 rounds of taxel and cisplatin. I had IV taxol and Avastin on day 1, IP cisplatin day 2 and IP taxol day 3. I was glad I was randomly put in arm 3 - meaning I got the IP treatment. If I had ended up in an arm without IP therapy, I wasn't going to do the clinical trial. My doctor would have included IP therapy in my treatment. I was mainly interested in getting the Avastin. I hope I hit it from every angle and it's GONE.

    Every Angle
    You impress me because you researched trials and chemos BEFORE getting started on chemo. I was shell-shocked.

    I was diagnosed in 2009, and my onc did not present IP treatment as an option. I think my onc was very aggressive in his treatment by giving me radiation, so I wonder why he didn't consider IP treatment. Perhaps he thought it would be too tough, or perhaps insurance didn't cover it...no idea.

    I know that in 2009 Avastin was just hitting everyone's radar screen as a good treatment option for OVCA, and that Blue Cross/Blue Shield would not cover it.

    So happy that you got in the randomized arm you wanted. So grateful that headway is being made against this disease.

    I hope you are NED FOREVER!

    -Kathy
  • Mwee
    Mwee Member Posts: 1,338
    Happy anniversary!
    I celebrated my five year anniversary this past May. I agree/ we will not let this disease define us. So many of us seem to have led very healthy life styles and still we were diagnosed. Seven is a wonderful CA-125 number.... Here's to posting next year!
    ((((TEAL HUGS))) Maria
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    congratulations !
    Did you find that the year went by fast ? I will be looking for your post next year with more good news.
    That is great that you take the time to educate people about this disease ,you will never know if you have saved a life but I'd bet that you will make a difference in someones diagnosis.
    Colleen
  • mopar
    mopar Member Posts: 1,972 Member
    THANK YOU FOR YOUR UPLIFTING TESTIMONY!
    And you are so right - how we respond to this challenge (and it truly is a challenge) makes a huge difference. Sounds like you also have wonderful support, which is so important. Hoping to hear ongoing uplifting news from you. Hugs and prayers to you, too!

    Monika
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    Every Angle
    You impress me because you researched trials and chemos BEFORE getting started on chemo. I was shell-shocked.

    I was diagnosed in 2009, and my onc did not present IP treatment as an option. I think my onc was very aggressive in his treatment by giving me radiation, so I wonder why he didn't consider IP treatment. Perhaps he thought it would be too tough, or perhaps insurance didn't cover it...no idea.

    I know that in 2009 Avastin was just hitting everyone's radar screen as a good treatment option for OVCA, and that Blue Cross/Blue Shield would not cover it.

    So happy that you got in the randomized arm you wanted. So grateful that headway is being made against this disease.

    I hope you are NED FOREVER!

    -Kathy

    Kathy.....my doctor would
    Kathy.....my doctor would not do the IP treatment for me, either. He never really gave me a definitive answer, but just alluded in general to the fact that I had had a bowel obstruction prior to surgery, that I required a bowel resection. Though he had no way of knowing it at the time he would have placed the IP port, I had a ton of complications and probably wasn't a good candidate, as it turned out. I spent 16 days in the hospital and had to go on TPN feeding.

    Also, my doctor does far fewer IP treatments than he once did. He says that only about 40% of the women he prescribes it for are able to complete all 6 treatments.

    I have been NED since the end of my first line chemo - March of 2010 - even without IP chemo, so who knows?

    Carlene
  • LaundryQueen
    LaundryQueen Member Posts: 676
    mopar said:

    THANK YOU FOR YOUR UPLIFTING TESTIMONY!
    And you are so right - how we respond to this challenge (and it truly is a challenge) makes a huge difference. Sounds like you also have wonderful support, which is so important. Hoping to hear ongoing uplifting news from you. Hugs and prayers to you, too!

    Monika

    Thank you for sharing!
    Taiga: Your story is inspirational to us all. I can relate to how you couldn't believe you had a cancer problem in the beginning--I was the same way! I'm still getting used to the idea of being a "cancer survivor." Good for you to want to educate women about this disease.

    (((hugs)))

    LQ
  • Tethys41
    Tethys41 Member Posts: 1,376 Member

    Every Angle
    You impress me because you researched trials and chemos BEFORE getting started on chemo. I was shell-shocked.

    I was diagnosed in 2009, and my onc did not present IP treatment as an option. I think my onc was very aggressive in his treatment by giving me radiation, so I wonder why he didn't consider IP treatment. Perhaps he thought it would be too tough, or perhaps insurance didn't cover it...no idea.

    I know that in 2009 Avastin was just hitting everyone's radar screen as a good treatment option for OVCA, and that Blue Cross/Blue Shield would not cover it.

    So happy that you got in the randomized arm you wanted. So grateful that headway is being made against this disease.

    I hope you are NED FOREVER!

    -Kathy

    Optimal vs Suboptimal
    Kathy,
    Do you know whether you were considered optimal or suboptinal post surgery? Patients who are suboptimal (with any tumor in excess of 1 centimeter in size remaining after surgery) do not qualify for IP chemo treatment. I was told about the option prior to surgery, but was not offerred it because I was suboptimal post surgery.