CA125 at 6900, 12 different chemo treatments

[momofsandj]

Hi -- I was diagnosed 7 years ago with 3C ova ca and have been in constant treatment.  After a clinical trial was worthless my cancer had gotten out of control and ripped me apart inside (was in between colon and vaginal wall -- caused bowel obstruction and shredded the vaginal wall),  Had surgery in December and I am once again asymptomatic with a ca125 of 6900,  I've has so many different therapies I have lost cout.  Currently on Avastin every other week and daily 50mg tablets of cytoxan.  How high can the numbers go while I stay alive and seemingly healthy even though the cancer has spread to my liver and is heading to my kidneys based on ultrasound?
Thanks
Jeanne

[momofsandj]

Hi Kari -- First, thank you for your kind comments.  I'm glad my ramblings are helpfuI.

Second, I had no symptoms at all that I would have called symptoms.  My cycles were getting a little "off" but I assumed I was perimenopausal.  My sister died of ovarian cancer and I have very flexible doctors who had been prescribing pelvic ultrasounds for more than 11 years.  When my cycles got a little off regular I couldn't schedule an ultrasound so I asked my GP to do a CA125 when he did my physical.  What a shocker for all of us -- my CA 125 was 1483 (anything 20 and under is normal)  15 months earlier I had a completely clean ultrasound.   Was sent right to the hospital for ultrasound which showed solid mass on one ovary and "something" on the other ovary..

Hospital sent me right to my OB/GYN (whom I have since fired just because I didn't like his patronizing attitude) who told me to have a CT scan, pick a Gynologic Oncologist from the list of three he gave me, and see him or her right away.  Within a few weeks I had surgery and it was at stage 3C. No bloating, no abdominal pain, no nothing.......If I hadn't had the blood test (which is very unreliable for some people but right on the money every time for me) I'd be dead already because it would have been in my organs before anyone even knew anything was wrong.  

I was sure it was cancer before I went into the surgery even though the doctor said there was always a chance it was benign.  I tried not to worry because I knew it wouldn't make matters any better.  Your symptoms read like a list of the ovarian cancer "non-symptoms", and coupled with the solid mass on your ovary, just prepare yourself for the worst and hope for the best,  You just want to make sure it's a gynocologic oncologist doing the surgery.  There is a much longer survival rather for those that go that route rather than having a general surgeon or an OB\GYN do the surgery.

Hang in there Kari.  Take what you need for the pain (hopefully just over the counter stuff will help some), rest when you are tired.  There's not much else you can do until they do the surgery and can see a pathology report.

With all best wishes for a benign mass, and a complete and speedy recovery from your surgery.  

Jeanne

[burtka]

After reading everything you've gone through, I too will say "what a testament" your an amazing woman and gives such inspiration to those in your shoes to always continue to fight.


If you don't mind sharing some information , I had a couple questions to ask...

1. What were some of your symptoms?
2. How did they find it?

I was recently diagnosed with a solid mass on my right ovary which is scheduled to be removed via surgery in a couple weeks but I also have so many other things going on was wondering if it had any relation or was is something different. The main ones has been a swollen stomach, loss of appetite, pain during intercourse, lower back & legs hurting, fatigue, and many more....I've told the doctors all these but all I hear is they won't know of anything for sure until they do surgery and open it up, but "NOT TO WORRY"
Yeah right! If I felt good and normal I wouldn't worry but I feel something isn't right. I just don't want to be blindsided. I would appreciate if you can share some of the things you were feeling before they diagnosed you. Thanks so much

Kari

[momofsandj]

Thank you for your kind comments and support -- I'm definitely still standing,  I have a friend who is an oncology nurse who says I'm going to make the Guinnes book of records for having the highest markers and still functioning normally (or normally for me at least!)  or for being through more chemos than any one else.  Whoppee -- what a claim to fame.
Anyway, thanks again and keep up the fight (or as I think of it, the tug of war with this stupid disease.
Jeanne

[SimplyStar]

From another Iowa woman,  you indeed have my admiration, your body has been through he-- and back, but it fights on, this only goes to prove that there is no normal for this damn disease, you are a great exception,  live each day to the fullest and may the Avastin prove that your body  can continue to fight.  Marty

[dian07]

Good God, girl......I can't answer your question.  I am sitting here in a state of shock just trying to absorb your situation.  Clearly you have cleared every hurdle in your path to date.
I sit here dumbfounded in a state of shock and awe.
I am so sorry you have had to go through all this disease can throw at you.....you're still standing, though.  Amazing...
Last night I watched a movie about Madame Curie...when the movie ended I told my husband that she and Annie Oakley were my heroines when I was a 12 year old girl (that kind of dates me, doesn't it?).  
I have another heroine now.....thank you.
May you find Peace and the answers you seek.
Peace.
dian