Annie’s Update: May 2010

Annie’s Update: May 2010

Remission #3 continues at almost 2 1/2 years! (More than twice as long as first remission) Woohoo! Was it the latest surgery, the chemo assay that helped us select the latest chemotherapy, the latest treatment itself or the vaccine clinical trial? Or maybe it was a little bit of everything? No one really knows for sure. What I do know is that I am a very lucky girl. There are no one-size-fits-all answers regarding treatment, diet, lifestyle and coping. Everyone responds differently.

Life has been good and busy. I'm preparing for my older daughter's wedding coming up soon. In 2007, I wasn't sure that I'd live long enough to see this day--and now I lost some weight, picked out a fantastic dress and plan to do a lot of dancing at the reception. Even though things are going well, I am determined more than ever to stay involved with the advocacy community and current with the latest medical research. My focus is doctor/patient communication and the decision-making process in the recurrent/resistant setting.

Hugz,

Annie

Author

annie_ovarian_cancer_survivor

Annie


  • Chrystine

    Annie- that is great news!!! I also was thrilled to live to see my son get married- so happy for you. What was the the last chemo regimen you had?

  • tina

    Are you still doing well?

  • Yui

    Hi,

    My mom is undergoing treatment for ovarian cancer for the past two years she was given taxol for her first treament after eploratory sugery. Se was in remission for 6-7 months and the cancer reoccurred. Sine then she was on doxil which she did not respond very well but the ca125 slowly went to 22. But it started going up again within a two months period and this time she started getting short bowel obstruction every month and then they started her on hycamtin which did not help her at all. Now her obstructons are more frequent and doctors are suggesting hospice. She does not have cancer anywhere else except for her intestines. I'm not ready to give up I need help and advice

  • Annie

    Hi Chrystine! I prefer not to post about specific chemotherapies since everyone responds differently and there is no "magic bullet" for recurrences. Sometimes our medical team gives us more than one choice of treatment and choosing chemotherapy can be daunting! There are so many things to consider, including whether or not a clinical trial is appropriate and quality of life issues. If anyone is contemplating treatment options right now, you can call the SHARE ovarian cancer hotline at (866) 53-SHARE to speak with an ovarian cancer survivor and perhaps be matched with a peer who has already had similar treatment. Only you and your doctor can decide which course of treatment is next, but having more information and an idea of what to expect can help us feel more comfortable going forward.

  • Hugz, Annie

    November 2011

    Mary: I am happy that my story gives you hope. Very very soon, my 3rd remission will hit the 4-year mark. I know a handful of "rule-breakers" who have managed to grab onto 2nd or 3rd remissions that are longer than prior remissions. It doesn't happen all the time, but it is POSSIBLE and that was the gas in my tank!

    I know exactly how you feel right now. Second recurrence was such a struggle for me after chemotherapy failed and we had to find something else to try. I remember having to dig down really deep to find some hope to hang on to. I was lucky to have a great local support group to help me. I met women who were living, and living well, with "chronic" ovarian cancer. These amazing ladies were still enjoying everything they could in between treatments: traveling, going to Broadway shows, dinner with friends, and laughing as much as possible.
    That gave me so much hope–that even if I didn't get another remission, perhaps I could manage the disease long-term, too.

    Also, learning about clinical trials and discussing novel therapies with my medical team became part of my strategy to increase my treatment options. Not every treatment or clinical trial is right for everybody, but learning and talking about what is currently being studied helps me figure out what I might be willing to try.

    If you want more information, please call (866) 53-SHARE to connect with a support group near you, or to learn more about clinical trials. You are not alone. We are here for you!

  • Hugz, Annie

    November 2011

    Susan: I am so glad that connecting with SHARE has been helpful to you and that your CA-125 result is in the normal range. CA-125 has been a good marker for me. I have been completely and totally obsessed about my CA-125 levels in the past. I still get nervous when I'm waiting for a result.

    CA-125 is not a perfect tool, but it's the best we have right now. Researchers have been studying other markers, alone and in combination with other markers, but nothing has surpassed CA-125 yet. This booklet from the Women's Cancer Foundation helped me understand CA-125 a little better: http://www.wcn.org/downloads/CA125levels.pdf

    Hope this is helpful!

  • Mary

    Your first line of your update, Remission #3 is lasting longer then the first remission, was exactly what I needed to read today. Currently battling to get into my 3 remission of ovca 3c, I've seem to have lost some of the fight or should I say hope. But reading your update has given me the shot of hope I so much needed. Thank you

  • Susan in Florida

    Hi Share.
    Thank you for all that have helped me. I got the results from my CA125 and it was a 7-under 35. I was very relieved, but I saw that one person on here had a 12 and still had ov. ca. I would like to hear from you if your CA125 was correct or not for your diagnosis. You are the best, and I so appreciate your support!
    Susan R

  • Hugz, Annie

    Hi Yui! Your mother is so lucky to have your support! I understand how frustrating it must be right now. During the first years of my survivorship, I tried 5 different chemotherapy regimens, including everything that your mother has tried. Have you thought about getting a second opinion or looked into clinical trials?
    3

    There are exciting new therapies currently being investigated that are only available through clinical trials. Earlier this year at the Ovarian Cancer National Alliance conference, I heard an excellent presentation by a fellow ovarian cancer survivor dispelling many misconceptions about clinical trials (http://www.ovariancancer.org/wp-content/uploads/2010/07/Clinical-Trials-Forum-2.pdf).

    Also, the Ovarian Cancer National Alliance has a Clinical Trial Matching Service (http://www.emergingmed.com/networks/ocna OR call 1-800-535-1682).

    Ovarian cancer is very tricky and, unfortunately, sometimes there comes a point when further treatment does more harm than good. It's difficult to know exactly when that point is. Open communication with the person with cancer, the family and medical team is very important.

    Yui, it is also very important that you get support so you can continue to help your mother. You can call the SHARE hotline (866-53-SHARE) for support or contact CancerCare which has great programs and support for caregivers (http://www.cancercare.org).

    Remember, we are all in this together and you are not alone.

National Helpline:
844-ASK-SHARE