3rd Treatment and Ethyl

NCEllen
NCEllen Member Posts: 115
in Ovarian Cancer #1
Hi Ladies! Tomorrow I get my (1st) power-port and will begin my 3rd round of chemo next Tuesday. I'm in another clinical Phase II trial (vaccine trial didn't work for me). I will get dose dense Taxol every week and possibly an oral glucose-factor inhibitor that will block glucose receptors. The glucose is from the insulin our bodies produce, not the sugar that we intake in foods. It's a three arm open study and I'll find out Friday if I will get the additional 'inhibitor-pill' along with the taxol. I'll get taxol no matter what.
Anyway, when I explained to my grown son how a 'port' is utilized he quipped - 'sort of like a gas cap'...hmmm, so I started thinking about naming it (like so many others have before me). When I had a temp. ileostomy I call it Betty Poop..
I'm calling my new friend 'Ethyl'..for the younger Teal ladies, ethyl is the old name for regular, cheap gas (although I know this port is anything but regular OR cheap!). Maybe naming 'things' helps me deal with family, friends and people in general when I talk about my disease. I think it helps break the ice and possibly opens the door for conversations and questions about OVCA.

On that side note, I met with a bank rep today and in the course of conversation we talked about my war on OVCA. She did not know that the pap did not pick up this disease. I gave her a little bookmark with the symtoms on it (I carry several in my purse) and proceeded to do a public service/education awareness moment with her. I left feeling a little better because she promised me she would share that info with the ladies at the bank. If we put our minds to it we can educate so many people just by starting with a single person. Now

I'm way off the subject that I started with but I need to just say that I think that primary care physicians should hand out OVCA symptom cards at every single annual well woman exam much like the breast self-exam cards that are handed out And they need to tell women that a pap smear will Not pick up ovarian cancer. I swear I don't ever recall that my primary care doc or gyn ever told me the symptoms of OVCA to be watchful for. I'm going to participate in an OVCA support group that has an opportunity to teache 3rd year med students about ovarian cancer and if above anything else that is one thing I plan to drive home in their pre-med heads..OK - sorry for the way to long post, I'm through yaking...(for now). Peace is born of faith and hope. Love y'all...El

Comments

  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #2
    I like the ideal of naming
    I like the ideal of naming my port your right it is an ice breaker. I just sent a request for the teal toe cards I think it is a good way to spread the word. Since I was dx on June 4th I have really been pushing my friends to have the ca125 test done once a year. I know it's not perfect but it is a start. I like you out look on things I hope while I go throught this I hope to be as upbeat as you are.

    Anne
  • carolenk
    carolenk Member Posts: 907 Member
    #3
    AnneBehymer said:

    I like the ideal of naming
    I like the ideal of naming my port your right it is an ice breaker. I just sent a request for the teal toe cards I think it is a good way to spread the word. Since I was dx on June 4th I have really been pushing my friends to have the ca125 test done once a year. I know it's not perfect but it is a start. I like you out look on things I hope while I go throught this I hope to be as upbeat as you are.

    Anne

    This disease sucks
    It's great to spread the word about OVCA--signs & symptoms. It's too bad that by the time a woman has a hint that she might have OVCA, the disease is almost always in the "late stages."

    We need better treatments for the disease as well as early detection. True OVCA prevention might come from cleaning up the environment--that is gonna take a LONG, LONG, time.

    NCEllen: along with the "glucose inhibitor" for the clinical trial, do you follow a low-carb diet? Just curious.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #4
    carolenk said:

    This disease sucks
    It's great to spread the word about OVCA--signs & symptoms. It's too bad that by the time a woman has a hint that she might have OVCA, the disease is almost always in the "late stages."

    We need better treatments for the disease as well as early detection. True OVCA prevention might come from cleaning up the environment--that is gonna take a LONG, LONG, time.

    NCEllen: along with the "glucose inhibitor" for the clinical trial, do you follow a low-carb diet? Just curious.

    Glucose inhibitor
    Yes, this sounds interesting. Sounds like they may be on to something.

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