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    Jeannie shared an experience

    Celebration (Remission): I have been dancing with NED for 8 months. It took about 6 months to feel good again. I still get tired out and have chemo brain but all and all I feel good! God is Good.

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    • Kathy's Avatar
      Kathy

      I'm really happy for you. That is awesome.

      about 1 year ago
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    Jeannie wrote on carm's wall

    carm, have you had ovarian cancer too. I am dancing with NED after being treated for agressive stage 4 serous ovarian cancer with mets to liver, lymph, and diaphram. I find your information very helpful and would like to follow you.

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    Jeannie started following

    User: carm

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    Jeannie posted an update

    nobrand, do have a cream called Lidocaine 2.5% to put on your port with a piece of saran wrap 1 hour before you go get your port accessed? My Dr gave me a prescription for it. Works like a dream.

    coopcrew, my CA-125 has been running in the 9's and 8's now. I will go 3 months until I get my next one.

    2 Comments
    • Carol-Charlie's Avatar
      Carol-Charlie

      Congratulations on the 8's and 9's... Doing a happy dance here in Minnesota. I'd forgotten about the saran wrap and lidocaine... yes it works.. I

      over 1 year ago
    • coopcrew's Avatar
      coopcrew

      Those are awesome CA 125 counts! I pray that they will stay that way for a long time. So far I have not felt any symptoms for recurrence. I go back to teaching with inservice meetings next week and students' first day is Sept. 4. With no symptoms, it is easy to ignore this cancer. My next appt. is Nov. 7. I started a new diet that is mostly vegetables and I am hoping that it will help me lose about 15 lbs, get my HDL and triglycerides back to normal, and keep this cancer from growing and giving me symptoms. We'll see...

      over 1 year ago
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    Jeannie started following

    User: coopcrew

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    Jeannie wrote on coopcrew's wall

    What stage of ovarian cancer do you have? I was DX with stage 4 epithieal (spelling) serous orvarian cancer with mets in 9/1/11 and have been NED for the past 4 months. My Dr says I am high risk for recurrence so I too am interested in what SX a person has for recurrence. I will now only go every 3 months for CA-125 which kind of scares me. The Dr said unless I have physical SX my next PET will be in 6 months.
    Jeannie

    2 Comments
    • coopcrew's Avatar
      coopcrew

      How high have your CA 125 counts been? Be patient with your situation and stay positive. I was Stage IIIC after surgery in June 2011. I have an excellent gynecologic oncologist surgeon who is highly rated and whom I trust. He felt that he had gotten all the cancer during surgery. However, research shows that even with optimal debulking, 75% of ovarian cancer patients will get a recurrence. The current research shows that early intervention for recurrence based on rising CA 125 is not any more effective with overall survival than waiting for symptoms to occur and then treating. In addition to this, since my recurrence occurred between 6-12 months after the end of front line treatment, I am known as platinum-sensitive. Research has also shown that if platinum-sensitive patients can wait 18-24 months before starting chemo again, then the same chemo will be highly effective again (this is known as a Platinum Free Interval). Waiting for symptoms also allows me to preserve quality of life longer before undergoing the side effects of chemo. I had a CT in mid-June of 2012 and again on August 1. The first CT did not show anything big enough to biopsy. My last CT showed that one of the pelvic lymph nodes had grown about 4 mm and that perhaps there was a small spot (couple of mm) on my diaphragm. Thus my doctor advised that I wait another 3 months to repeat the CT, unless I develop symptoms before then. I agreed with that advice. That is why I am waiting for symptoms and investigating what those symptoms may be. My husband used this analogy: Pretend that you are in a gunfight in the Old West. You have 6 bullets in your gun to use. You know the enemy is out there somewhere. You want to be wise with your bullets. You shouldn't just go shooting them off in the air hoping they will hit the enemy. You want to be patient enough to wait until you see that the enemy target is within range so that you can get in a good hit. If you get a good hit the first time, you still have 5 more bullets to use in the future. Otherwise you can use some of your other bullets (different treatments or chemo) right away, before the enemy is close enough to do you harm.

      over 1 year ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      Jeannie... I was diagnosed as Stage IV Epithieal Ovarian Cancer also. I was diagnosed on January 25th, 2006. I'll wait while you do the math.. Oh heck it's 6 years and 7 months ago. I too had an excellent gynecologic oncologist surgeon. He removed my 39 lb tumor (and the other healthy one) he scraped and sectioned the cancer that he could see...and implanted a port for the infusiion of chemo directly into my abdomin. I had a PET CT Scan that showed there was no cancer left. We decided to have the chemo treatment... I always suggest - 1) find an excellent gynecologic oncologist surgeon then listen to him. 2) fight... fight fight. Not sure what SX means in your post. I too go in every three months for CA125... and have an internal every six months. God Bless you!

      over 1 year ago