Long Term Survivors?

Hello all:

 I'm worried about the prospect of ovarian cancer (having some complications currently and praying I'm ok)...and I'm thinking it would be encouraging for everyone to hear the stories of long time ovarian cancer survivors...how did you beat it...what stage were you in...whatever you feel led to your success...

 

Thanks so much.

 

MJ 

Hi MJ,

 I saw there were no responses yet to your post, so I thought I would jump in, even though I don't have ovarian cancer (my mom does.)  There are long term survivors out there - I personally know three in my circle of acquaintances.  Two women who are 15 year survivors and another who is a 7 year survivor.  I don't know where they were staged when they were diagnosed.  All I can say is to be vigilant about any small signs that you are having a recurrence.  I also know women who have beated it back 3 times and have a great quality of life.  Stay strong and healthy.

 

Christiane in Oregon

Hi MJ,

I am 56 years old and was diagnosed with stage 3c ovarian cancer in October 2001.  I had a total hysterectomy and six rounds of chemo taxol and carboplatin. I lost my hair of course and treated myself to a human hair wig. I continued to work and on days when I could not make it in, I would tele-work. I have always kept a positive outlook about this illness.  I was in remission for 5 years and a CT scan found a small growth in my abdominal area so I went back on the same chemo for another six rounds. It came back in the same area and in January 2008, I started chemo again, Taxotere and Gemzar.  I developed an allergy to Gemzar, a rash and reddened skin. No reduction in the abdominal mass size of 4 cm. The dr. took me off of treatment and suggested a referral to NIH for a clinical trial with the drug, Avastin.  NIH after reviewing my records decided I was not sick enough to participate in their clinical trial.  In September, I had a CT scan and the findings were an increase in the abdominal mass as well as a small mass in my right lung.  I am now on Doxil, once a month.  No hair loss, and no sickness but I have developed a rash on my legs and upper back.  The dr. told me to keep cream on my hands and feet, I use Eucerin at night and wear socks and gloves. I work full time so I can't be as vigilant in using the cream during the day.  I have neuropathy in my hands and feet but it's relieved with accupuncture. I keep a positive outlook and continue on as normally as possible.  I am tired right after treatment but I rest when I get home. I receive a monthly newsletter called Conversations!  It was started by Cindy Melancon, a nurse who developed ovarion cancer and had no one to turn to.  She recently passed away but not without a fight.  This newsletter gave me strength. It continues on because of Cindy's husband, Don and daughter, Angel.  The newsletter is free but donations keep them in operation.  Call 210-401-1604 or email OVCANEWS@aol.com.  The website is http://www.ovarian-news.org  They list long term survivors and it always gives me hope.

Good luck!

Sue

I was diagnosed with stage 3C ovarian cancer in September 1999.  I had a 2 year remission, 2.50 year remission and then 9 months.  For the last few years I've been on chemo most of the time. It is possible to survive a long time.

Evey chemo I've had has worked (at least for awhile) The cancer still hasn't spread to my liver or lungs.  My doctor said it probably won't spread after all this time.  He said I will probably die of a bowel obstruction.

I know that what ever happens to me I'll be okay.  I eat what I want and do what I want. I still work full time. The gemzar I was on suddenly stopped working a few weeks ago. I'm having quite a bit of pain but that makes it easier to have chemo again.  This will be my 10th round. 

My advice would be to pay attention to your body and any new pain or change you notice. Don't be afraid to take chemo, embrace it.  It's your best friend.

I am so happy for you! I have a neighbor who beat the odds after the DR's told her she only had a few months to live. She has lived about 15 years since!!! I myself am having a pain in my upper right abdominal region it is not a stomach ache, it singes, burns almost I have noticed it for about 6 months. Is this a pain comparable to an ovarian problem? 

It sounds more like gall bladder pain. Have you had it checked?

I had an ultrasound and CAT scan last month,October. I am going to a Dr appt this morning for check up.  I never got any real answers in review of those tests.I had originally thought that maybe I had gallstones but none were found, I guess maybe I will know something soon. 

Ask your Dr. to do a CA125 test.  That might give you some information.  My oncologist goes by that and the PET scans.  I have had peritoneal (ovarian) cancer since 2006 and the CA125 and PET scan was used to determine my cancer and what surgery, etc. I needed.  I also had some abdominal pain and felt I was getting fatter.  Still I didn't realize how bad it was until these tests were run.  Good luck.

Gayle