• Lynne-I-Am's Avatar

    Lynne-I-Am wrote on ezmonday's wall

    Hi there. Wanted to give you a little info. A great site for any ovarian cancer survivor is ocrahope.org. I have been to two of their annual conferences , before Covid, Nothing lifts a survivor’s spirits like one of these conferences. I highly recommend it . The organization is made up of ovarian cancer survivors , for ovarian cancer survivors. The organization also petitions congress for more research funding to fight this crappy disease as well as raises its own funding for research. Theses are a great group of ladies and the information on the site is insightful and current. Also there are several Sites on Facebook exclusively for ovarian cancer survivors .

  • Lynne-I-Am's Avatar

    Lynne-I-Am wrote on ezmonday's wall

    Hi ezmonday, your post came up in my e-mails. I am alerted when a member of WhatNext asks a question concerning ovarian cancer. I was genetically tested and I am BRCA negative. They did find a mutated gene in my makeup but at this time , do not know what this specific gene is responsible for. I was diagnosed IIIC in 2013 at age 66,, went into remission March 4th, 2014 after chemo, surgery and more chemo and have been in remission since then. Today, many doctors place their ovarian cancer survivors on a maintenance medication following chemo. This was not widely done in 2013, so have not been on maintenance . All of us are individuals and respond so differently to this disease. I am active on several ovarian cancer sites and from survivor’s posts can tell you that there are many ladies surviving years after diagnosis with later stage ovarian cancer who have had no recurrence and still others who have had a recurrence then become NED with no further recurrences. There is unfortunately too many who never reach NED or have reached it several times only to recur. This is the terrible mystery of cancer. Keep in close contact with your doctor and listen to your body. During the past seven years I have had two false alarms, thinking I had a recurrence but luckily no evidence of disease found. I know that the shadow of this disease always follows you, in differing degrees for all survivors. From the time I was diagnosed I have always looked forward . Two pieces of encouragement that were said to me when I first came to WhatNext, 1. Take things one day at a time, and 2. No one is stamped with an expiration date. Wishing you always better days ahead and here to talk anytime.

    1 Comment
    • ezmonday's Avatar
      ezmonday

      Thanks Lynne for the info. My oncologist has said if we get clear CT scans he will be putting me on oral chemo drugs which I will be on the rest of my life. Thank you for such a positive outlook. Wishing you continued health.

      2 months ago
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    ezmonday asked a questionOvarian and Fallopian Tube Cancer

    HRD+

    • andreacha's Avatar
      andreacha

      I'm sorry you haven't had a response after 4 days. My cancer was entirely different. Hopefully, some of the others with knowledge will chime in soon.

      2 months ago
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    ezmonday started following

    Question: HRD+

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  • ezmonday's Avatar

    ezmonday asked a questionOvarian and Fallopian Tube Cancer

    Ways of dealing with chemo induced neuropathy

    9 answers
    • MarcieB's Avatar
      MarcieB

      T-Birdie, I would be interested to know what essential oil you have used on your feet? I am almost two years out of treatment, but I also had neuropathy linger in my feet. Mostly, I experience the numbness, like socks bunched up under my toes, but my feet would hurt at night when I went to bed. About 6 or 8 months ago I began using lavender oil on the bottoms of my feet to help me sleep better (it does) and lately I have noticed my foot pain is completely gone and my numbness is much better. It could be a coincidence because maybe the condition eases up with time? But, since you mentioned essential oil I thought I would ask.

      5 months ago
    • lauraM's Avatar
      lauraM

      Memorial Sloan Kettering has been icing my feet and hands during treatment. This has really helped with preventing neuropathy in my hands and feet. I have taken gabapentin in the past but I do not like the way it makes me feel tired.

      5 months ago
    • Kp2018's Avatar
      Kp2018

      lauraM, I am glad to hear that MSK is providing cryotherapy to prevent neuropathy. I had to provide it for myself when I was on Taxol. While researching the side effects of my chemo regimens, I ran across the following study: Effects of Cryotherapy on Objective and Subjective Symptoms of Paclitaxel-Induced Neuropathy: Prospective Self-Controlled Trial. https://academic.oup.com/jnci/article/110/2/141/4443215

      I used the protocol with mitts and booties purchased from Amazon, and did not develop any peripheral neuropathy.

      I wish this information were more widespread. It really pains me to read of patients who suffer from neuropathy from chemotherapy, when I realize that for many patients it can be prevented.

      5 months ago