• kalindria's Avatar

    kalindria wrote on Lesl's wall

    Hello Lesl and welcome to WhatNext.com!!

    I was diagnosed in 2013 with stage IV ovarian cancer and, after treatment and surgery, was cancer free for two-and-a-half years. I went through my initial diagnosis, chemo and surgery in California but I live in Washington state now. In July of last year I had a recurrence and am now taking part in a clinical trial which is going pretty well.

    This is a great place to connect with others who can help you, share experiences, answer questions, offer links to resources, and provide moral support. I think you'll like it.

    Let me know if you have any questions for me; I'm happy to share whatever I know. All the best!

  • GregP_WN's Avatar

    GregP_WN wrote on Lesl's wall

    Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

    https://www.whatnext.com/conditions/cancer/ovarian-and-fallopian-tube-cancer

    you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall. Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you

    Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

    Like us on Facebook Here=>> http://bit.ly/2aurqLL
    Follow Us on Twitter Click Here =>http://bit.ly/XExkce
    Our Pinterest Page with Resources=>http://bit.ly/12qVtEs
    Follow Us On Instagram=>>http://bit.ly/1pF5yh0
    Our Help Page with instructions for the site->http://bit.ly/1aR5165

    GregP 3X Survivor
    WhatNext Community Mgr.

  • Carol-Charlie's Avatar

    Carol-Charlie wrote on Lesl's wall

    Welcome to our WhatNext Family!... I was 62 when I was diagnosed with Epithelial Ovarian Cancer - Stage IV, My Gynecologic Oncologist Surgeon removed a 39 pound tumor, and then carefully scraped all the cancer he could see from my intestines, and urethra along with removing a 'fat pad' with cancer cells. (I'd had a hysterectomy at age 45)

    I was then scheduled for I/V and I/P chemo of Taxol and Cisplatin! After surgery I asked my Oncologist how long I had...... He answered "Six Months"... I told him I wanted to fight!... So fight we did. That all took place in February 2006! I will turn 74 the end of May and am still cancer free. 00000
    0
    .
    Now I'll tell you what I did. I was very scared when I heard, cancer and Stage IV.... I'm here to tell you IV is just a number!!! I had Six 28 day cycles of I/V infusions on day 1; then I/P infusions on Day 2 and Day 8 of each cycle. It was totally doable.... I received meds to keep me from throwing up. I lost my hair, but had been told to buy a short wig prior to starting chemo. My hint for GREAT reasonably priced wigs... PaulaYoung.com People always told me they'd never dream it was a wig.....

    But most important... when I told God how scared I was..He immediately removed my fear. Then I asked Him to take my hand and lead me to where He wanted me to be.... He has never let go of my hand.... I'm saying a prayer that you too will be calmed and directed by His hand. God Bless You.

  • NanHope's Avatar

    NanHope wrote on Lesl's wall

    Hi Lesl,
    I just read your story - I am so very sorry that you are walking this journey with the rest of us here...members of a club that we never wanted to join. I am originally from Quincy and go back frequently to visit family so I'm familiar with your whereabouts - you are lucky to be so close to the best health care in the world. Boston is the mecca, IMO, so you are in good hands :)
    I have an extremely rare type of OV CA. They sent my pathology to MGH for definitive diagnosis - the experts there identified it. First diagnosed (stage 1!) in 2003, I had my first recurrence in 2011. So stages don't mean a lot to me - stage 1 has a high cure rate, but mine came back just the same. Stupid cancer. I had IV and IP chemo in 2011 (after debulking surgery). Taxol and Cisplatin - hair loss, nausea/vomiting - all the usual side effects. But I got through it and SO WILL YOU! This too shall pass.
    Had 2 more surgeries in 2016 for small recurrences (found on CT or MRI), but I am doing well now and feel great.
    Three things:
    Have your doctors mentioned IP chemo for you (the chemo is administered through a port directly into your abdomen/pelvis)?
    Also, I took sleeping pills during my chemo - I would never have slept if I didn't! I figured I would do whatever I needed to do in order to get through the treatment, which was the ultimate goal - complete all treatments so it could kill the cancer. My advise is don't worry about what you need to do and/or take to complete your treatment. I no longer take sleeping pills, but am glad I did when I needed them.
    Lastly, not sure how you feel about meditation, but a nurse introduced me to a great app for guided meditation that I find super helpful. It's called Insight - its free and I downloaded it on my phone. Very easy to use and I really love it.
    I wish you well, Lesl - stay strong. Us "Boston girls" are strong stock! There's nothing we can't do! Cancer messed with the wrong ladies here.... :)
    Do stay positive - you WILL get through this. Sending you a cyber hug xoxo Nancy

  • KeepingFaith's Avatar

    KeepingFaith wrote on Lesl's wall

    Hi, Lesi: I am sorry that you have to experience this difficult health journey, but I totally agree that keeping a positive outlook and getting on with your life as much as possible is the way to manage the situation. Briefly, I was diagnosed in March 2015 (at age 63), as Stage IIIC (probably IV) but I purposely asked the doctors not to discuss exact stage and prognosis with me. I have always considered this to be MY journey and that the outcome will be good. I had a port put in (you will be glad you did), started Carbo/Taxol for 3 rounds, then had major surgery (total hysterectomy, with appendix and omentum
    removed, and a few other tweaks along the way). Still, the debulking was suboptimal, so I continued on chemo for several more rounds, this time Carbo/Gemcitibine. A January 2016 PET scan showed everything clear except for a residual area in the liver, so more rounds of chemo (Topetecan) and Avastin. As of July 2016, the liver area persisted and in September, I had a liver resection by a noted liver surgeon/oncologist at Johns Hopkins Hospital. He had experience with metastasis of ovarian cancer. He looked around for other nodules, found two other small ones on the liver, but considered me optimally debulked after that surgery. My CA 125 at time of diagnosis was close to 600, but has remained in the 4-7 range after the initial surgery. I developed an infection in the incision from the September surgery and had that fixed, and now I am due for another scan this month, but have been off of chemo since July. I am coming to grips that tests, scans, fear, ups and downs will be a part of my life, but I feel great, have the support of wonderful friends and I do almost anything I want to do. I am praying that the next scan does not show a need for more chemo, but the good news is that I tolerated it very well under the circumstances. While I lost my hair completely on the Carbo/Taxol, it started to grow back on the other chemos and now has grown back to its original shoulder length, more luxurious and full than before. YOU CAN DO THIS!!

  • Lesl's Avatar

    Lesl started following