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CA 125

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hello to you all here in a group that I can finally relate to. I am so upset that Uterine and Endometrial cancers are not researched as much as they should be. When I got dx in 2007 I looked online to see what the chances were for me to be a survivor and what was offered. I was so disappointed at the results but now I am so happy to have found this site. Thank you.

The other day my doctor and I were going over my blood counts and the subject of the CA 125 came up and he told me that this test is not a good indicator that the treatments are working or not working or if there are new tumors. Has anyone else heard of this? My CA 125 has always been like from 5 to 8 and not any higher. I have mets to the lungs now and I just had my 5th treatment with both booster shots. I have to wait until the 6th one is over before I can get the CT scan done to see how things are. Anyone else have mets to the lungs?

Living with hope,
Sharon

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Glad you found us. Very sorry to hear you have to be here. I too looked for anyone and anything to help my research and for support when I was hit with UPSC in 2006. My CA 125 was 7 when I had my hysterectomy it went up to the 30's and higher while in treatment. I have had NED since I finished my chemo, radiation and bracy in 07. When I had my last scan and CA125 a couple of weeks ago my CA125 was 8. My oncologist says since my CA125 did not elevate while I had the active cancer it is not an accurate test for me. Since this test is not acutrate it opens doors for me to have alternate tests that my insurance may not want to pay otherwise. Such as a Pet scan. So if this is true I guess it could be a good trade off. Yes, I agree with you that we sure do not get the same attention or funding for our type of cancer. I get very frustrated with all the pink and breast cancer advertising. I wish anyone anywhere the best with this dreaded disease. I hope the reseach will help us all. But I hate the fact that we have such a small amount of research since we only make up 5-10% of this rare cancer. Tell us more about your journey if you can? Despite my NED my chest scan shows a spot on each lung. So far they are not growing. I scan every 3 months. I pray that your lung hot spots have calsified and that you can heal in Jesus name. God Bless Peggy

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Thank you Peggy I read that you have a long and tiring road to travel. I will keep you and your family in my thoughts everyday. You are so right about children keeping us going I am sure to be a first time grandma in July so I have to go into remission. I dread the ct scan coming up in about a month because none of them have been any good. Your CA125 totals are like mine they haven't moved much at all so I don't even ask about them much. I wrote my story in my profile if you would like to read it. I had cancer in 2007 and thought all was well and boom here I am with it again. I sometimes think we are all test subjects for this beast. I will always be dealing with this cancer from now on. I have accepted that I am on borrowed time for the second time and but I am not going to stop fighting.

I wanted to give up after my 3rd chemo treatment but something just made me go ahead. Now, one more to go.

We have a lot of information here from our leader and I want to thank her for it.
I have been going to Hystersisters and read of the journey's from that group also. You may want to go check it out. I like this site much better.

Sharon

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I think that CA-125 works for some people as a good measurement of the effectiveness of treatment, and for others it simply doesn't. Originally they hoped to use CA-125 as an inexpensive routine test to SCREEN women for ovarian cancer, but they had an unacceptable number of false-positives and false-negatives, so they had to scrap that idea. But CA-125 turned out to be a fairly accurate diagnostic tool for measuring TREATMENT effectiveness for some people. You can read a lot about CA-125s on the ovarian cancer discussion board of this website, where for some women it defines their treatment over the years, but for others simply is not a reliable indicator. Just like for us!

At first I thought that the CA-125 wasn't going to be any kind of an indicator for me because my pre-surgery CA-125 was lower than my post-surgery CA-125. But when I started having my chemo, my chemo oncologist discounted my pre-surgery CA-125 as a mis-read, and my post-surgery CA-125 as "too early after surgery to be counted." And I don't think he trusted any other lab's readings except his own. So he used the CA-125 reading taken just before my Round 1 chemo as my 'baseline'. And for each round of chemo I have had since, my CA-125 has dropped, and is now 17.5 after 4 rounds of chemo. So, since the my CA-125 had been consistently dropping, I've decided that CA-125 may just be a good indicator measurement for me. Now if my CA-125 goes UP after Round 5 chemo tomorrow, it will worry me for sure. I won't be getting a new CA-125 test tomorrow since I had one last Monday when I went for chemo and then couldn't get it, so I won't have a new number for 3 more weeks.

PEGGY: How's Garth doing? I think of you both all the time.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

It is so fine to see you on here ... you are sure a leader of our pack. My Garth is not so good. IF there are changes they are suttle to the good. Then he will have a very bad day to frustrate me again. Lot's of pain and lot's of no food. He is very very weak. We were at the hosp again Wed and Thurs. Jo had her 12th B day party Friday... 6 overnighters. Needless to say we did'nt get much sleep. But, since all this pancreatic crisis started we sleep in a few minute increments. At least Jo had a great party. She had a flip flop theme with sherbert punch and a flip flop cake. They all went to the water park Sat and then on to a church lockin. Our baby is growing up. When I was first diagnosed with UPSC my anger was directed at not living long enough to be able to see all of her stepping stones. Now each time she sings in church, had first comm. or even at her school programs and dance recitals it is so emmotional for me. I know it is a true blessing to have her. She keeps me going. I wish you the best tomorrow. My prayers to you still. Hope you got to hug extra hugs to your grandchildren. Where would be without those little people to lead us through?!!

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