• rjtom's Avatar

    rjtom posted an update

    My name is Paul, I am Robins husband.
    Unfortunately I have to inform this group that Robin passed away on April 10th.
    I know how she did a lot of reading on this groups site, and had a lot of respect and admiration for many of its subscribers.
    A couple of days after our much-anticipated trip to Disney, Robin was diagnosed with liver failure, and passed less than two weeks later.
    Robin fought like a true champ for over four and a half years with this horrible disease. Even towards the end, she was still trying to smile, and still trying to be positive.
    Best wishes to all of you. Good luck and God bless.

    2 Comments
    • Kirvin's Avatar
      Kirvin

      I am so sorry for your loss, Paul. What a blessing that you had your trip to Disney. You and your family will be in my prayers.

      over 1 year ago
    • LMMitchell's Avatar
      LMMitchell

      I am so very sorry to hear of your loss. I don't recall having any contact with her personally, but looking back at her posts I see that she was a comfort and friend to many others. My prayers go out to you and your sweet daughter whom she loved very much.

      over 1 year ago
  • rjtom's Avatar

    rjtom asked a questionOvarian and Fallopian Tube Cancer

    Yondellis? Anyone heard of or been on this?

    • barryboomer's Avatar
      barryboomer

      I'm sure there are others here that know about this. Just wondering have you changed anything in your life ( Diet etc. ) in any radical way to help the cause?

      over 2 years ago
    • kkelly111's Avatar
      kkelly111

      I did doxil. Found I was platinum resistant and that is what they go to for this. Doctor put me on a dose of 40 instead of 50 for the hand/foot syndrome. You keep your hair, you can go to your dentist and the time for infusion is much shorter. After the cysplatin I had a return in 6 months, since doxil it's been 14 months. Good luck, stay strong

      over 2 years ago
  • rjtom's Avatar

    rjtom asked a questionOvarian and Fallopian Tube Cancer

    What to do?!?

    4 answers
    • cam32505's Avatar
      cam32505

      It sounds like your second opinion saw something your original onc didn't see, and they both recommend the same treatment. It sounds like your original onc gave you some chemo to get your ca125 down, but maybe stopped the treatment too soon. It sounds like you are hesitant to leave your current onc. I would be concerned that your onc didn't see the tumor, yet the new onc did see it. What else is your onc missing?

      over 2 years ago
    • jackieg's Avatar
      jackieg

      First of all I am so sorry you are having to go through this recurrence. Secondly, who do you feel most comfortable with, that is the question. Go with your gut. I was not in the exact same situation as you but I did and I am so happy because I did. I have never been on doxil so I can't give you any advice on that.

      over 2 years ago
    • Jalemans' Avatar
      Jalemans

      I say Go For The Treatment! It is scary, but the doxil may save your life. I wish you well whatever you decide.

      over 2 years ago
  • rjtom's Avatar

    rjtom started following

    Question: What to do?!?

  • rjtom's Avatar

    rjtom asked a questionOvarian and Fallopian Tube Cancer

    reoccurences

    9 answers
    • kalindria's Avatar
      kalindria

      Like glam, I went through chemo and surgery for my fallopian tube cancer and then underwent maintenance chemo for 7 months. My doctor wanted me to continue the maintenance for a full year but I was unable to truly enjoy my life and a second and third opinions said it wasn't necessary so I stopped after a serious discussion with my oncologist. Since I'm stage IV, my oncologist seems pretty sure the cancer will return so I will remain vigilant but I'm not going to allow it to take over my life any more than it already has.

      Get a second opinion if you have doubts. Get a third opinion if you can. I felt so much better after I did.

      over 2 years ago
    • barryboomer's Avatar
      barryboomer

      Cass....Chemo does NOT Boost the immune system.....it actually does the opposite.

      over 2 years ago
    • Bb31565's Avatar
      Bb31565

      I am a 3B OC patient...with recurrences. I have been told you are always staged at the first diagnosis so I will always be a 3B. I took tax/carb combo twice and now doing the Doxil ( you don't lose your hair with this one) which with Doxil your CA 125 will rise before it goes down and it takes a few treatments before you see it come down. It is red so I call it koolaid! Don't panic if you pee a bit pink after treatment. Also, I sit with ice on hands and feet because the biggest side effect is the blistering of them...I had problems with this using tax/carb so as a preventative suggestion from onc who suggested the ice constricts the small blood vessels to the extremities and will help. I do it and it does help since I've had no issues thus far. I am up for a clinical trial in the next couple of months. This is living with a chronic disease and like diabetes ( which I have too) I prefer the diabetes at least I have control over that beast but not this cancer!!!! Good Luck

      over 2 years ago
  • rjtom's Avatar

    rjtom started following

    Question: reoccurences