Slow-Rising CA125

• By FavoriteAunt
• Posted July 5, 2008 at 9:03 am
• Report post

Hi Susan,
Yes, it fluctuates but they have to keep monitoring it. You're still around the "normal" range (I was told normal is under 30, super normal is under 20) and maybe that's what the doctor is going by.

I had a recurrence last Aug. after being in single digits for 6 1/2 years. The number went fom 10 to 40, and a week later to 59, so that was the sure signal - plus a CT scan. They never went back down, just up.

Since they check you often, you'll have to just wait for the results. It could be a fluctuation, but watch to see if it a trend that keeps moving up. Then I'd ask for a CT scan too. I hope you get good news and that your fears are unfounded.
Jo

• Reply

• By jolock2004
• Posted July 5, 2008 at 11:29 am
• Report post

Hello,
My Onc will not do anything unless it is over 35 or I start to have symptoms. My ca is very reliable (I have had 2 recurrences so far) and when it starts to move something is wrong. My Onc looks for a trend of rising ca# ,once it is out of range he then starts checking my number monthly or he orders diagnostic exams like a CT or PET. My numbers during my recurrences were low,but still out of the range. I do also know of ladies who recurr with normal numbers. your Dr is having you tested pretty often..so I'm sure if it is anything it will be caught early when you have the best chance. I wish I could give you better news,and I hate the worry and wait time that we all go through with this monster. Keep us posted~~~Joanne

• Reply

• By momanderson920
• Posted July 6, 2008 at 8:32 am
• Report post

Does anyone know if the Ovasure test is reliable in a case like yours, Susan? It is supposed to have a 99% accuracy rate and it tests 4 different factors in the blood, not just one. There is info on it on the website somewhere. It is offered by Labcorp and if insurance doesn't cover it, it costs $225. I am planning to ask my oncologist about it on Monday. When I had asked her if there was something new on the horizon only a month ago, she said no, and then this came out only a few weeks later. I would ask your oncologist about it.

• Reply

• By momanderson920
• Posted July 6, 2008 at 8:33 am
• Report post

Susan, are you having any symptoms? You didn't mention any.

• Reply

• By Eileen1941
• Posted July 6, 2008 at 9:55 am
• Report post

Hi Susan,

I certainly understand your concern about your CA-125 going up. As I'm sure you have heard, the CA-125 is only a guide that can indicate a possible problem and the results can be influenced by factors other than cancer recurrence. But if the level continues to increase for at least 3 consecutive readings, it can be a strong indicator that a possible recurrence is underway. If your next level is also higher, I would ask for a scan to check for possible recurrence and to satisfy your concern. Most oncologists use the CA-125 as a guideline but they base their treatment decisions more on the results of scans.

Please keep us posted on how you are doing and the reults of your next CA-125. Since the level is rising slowly it sounds like, if there is a problem, you will be catching it in it's early phase. So hang tough and know that there are lots of treatment options out there! God Bless!! Eileen

• Reply

• By Susan5
• Posted July 6, 2008 at 3:04 pm
• Report post

Thank you all for your beautiful and encouraging words of wisdom and encouragement....
No, no symptoms....
It's slowly risen over 3 tests.....
I'll see the gyno oncologist on Tues -will let you guys know what she says.
Thanks again for all your love....
susan

• Reply

• By kellyladuke
• Posted July 16, 2008 at 5:26 pm
• Report post

Hi Susan
I too, have had a recurrance. I was on taxol and my numbers went from 8-19-28-to 41 in 3 months. I insisted that I have a CAT scan (yesterday) and today, my results showed a 1x1.5 soft tissue mass. The best way to jump on this problem is to stay ahead of it and get it early. I am a VERY optimistic person, but you have to grab the bull by the horns and if you can let go of the fear of a recurrance,then you can look at your options for viable treatment. Check out the YALE study on Phenoxodial. I'm also doing alot of other holistic stuff...and prayer.

• Reply

• By songbird78
• Posted July 16, 2008 at 5:37 pm
• Report post

Well I too have been having this happen. I was 26 the last bloodwork , then dropped to 20 on my last bloodwork a week ago , and hes ordered another one in 3 more weeks, aug 7th which is the day before my vaction. I really dont feel sick, and like soemone said they wont do a thing unless it passes 35, but you got to wonder if something is not going on NOW , I feel it if caught BEFORE it can become cancer better for all of us....if my numbers rise again over 20 im demanding a catscan.

• Reply

• By Jane4
• Posted July 17, 2008 at 10:42 am
• Report post

Hi Susan,
I was first diagnoses with IIIc in 12/04, and have had two recurrances -- both with my CA 125 in the "normal", under 35 range. My onc and I have now determined that my baseline CA 125 is in the 12 - 15 range. When it starts creeping up, 16, 18, 22, she orders a CT or Pet scan. When my CA 125 started climbing during my first recurrance, my drs were reluctant to do anything, since 22 was still in the "normal" range, but they did order a scan. For both recurrances, when the numbers started to climb, the scans showed evidence of recurrance. And, both times I was able to have more surgery and more chemo.
I've had about 1 year of good health in each remission period, and am currently in remission again -- and hoping for another year of good health. On the positive side, now we feel confident that my CA 125 is a very sensitive marker for me. So, unlike past periods, when I was monitored with both a blood test and scans, now we're just doing the blood test. When it goes up, we'll respond with a PET (assuming the insurance won't give us too many problems!)
If I were you, I would be concerned about the increase from your personal baseline, and would ask for some scans. Then, if they find anything, you can act on it at the earliest possible time.
Be vigilient and your own best advocate.
Good luck to you!

• Reply

• By Susan5
• Posted July 18, 2008 at 6:22 am
• Report post

Hi Jane:
Thank you so much for your post; very helpful to me..
My numbers have been 6s & 7s for 2 yrs so the slow rise now reaching 21 is concerning everyone.
Did get a scan about 6 wks ago -it was perfect!
I'm brca2 so we think it will progress fast once it gets started -that's what it did the first time.
The doc scheduled another ca125 for Aug 12th with instructions to call if anything is weird; any symptoms at all and gave me a list of symptoms. I feel great! I do about 2 hrs a day of intense fitness & strength training -they feel I should wait for proof of recurrence before jumping into a treatment. The new thought is to give us as much non-treatment time as possible...seems to make sense to me...
Would love to know your take on it...
thanks so much!
susan

• Reply

• By Susan5
• Posted July 18, 2008 at 6:24 am
• Report post

Thanks for your post!!
No symptoms - I feel great!
But, I felt great with stage 3C and a belly full of cancer
did you have any symptoms?
susan

• Reply

• By momanderson920
• Posted July 18, 2008 at 7:21 am
• Report post

Susan, I am so glad your scan came back OK. I just finished treatment 6 and have not been on the roller coaster after treatment yet. I can only imagine. I am so happy that the scan was clear!

• Reply

• By Jane4
• Posted July 18, 2008 at 10:20 am
• Report post

Hi Susan,
I'm glad you wrote back. I was thinking about you this morning, hoping my post didn't sound too negative. But, I also remembered reading something about being concerned if your CA 125 doubles - even if its 'Normal'. I guess the idea of anything under 35 being ok may not apply for people with ovac.
I also have a brca mutation but for me its brca 1. Have you heard that we tend to respond better to chemo? At least that's one upside of the genetics. (Always gotta try to see the silver lining.)
Sounds like you and your drs are being vigilant. I know they are reluctant to treat if there is no evidence of disease - which seems logical to me.
Last time my CA started rising, but before there was evidence of disease, my dr. put me on tamoxifen. I think the research is sketchy on how effective that may be for 1) ovac, and 2) brca patients. But, several drs. concurred that it would be good to try. I had no side effects, but unfortunatley, the cancer did return, which sent me into the 3rd round of treatment. Now I'm on it again - still no side effects. I'm also taking curcumin supplements, which some research vaguely shows may help. The data is still out, but again, my dr. ok'd it and it has no side effects.

On a different note, are you familiar with FORCE - facingourrisk.org, I think. A group for brca people - survivors, caregivers, previvors. Check it out.

Good luck and keep us posted.

• Reply

• By Susan5
• Posted July 19, 2008 at 6:49 am
• Report post

Thanks Jane:
No, your post did not seem negative; the truth is what I was looking for & you were kind enough to give it... thanks...
Mental preparation -to me- is half the battle.
First feeling was disappointment & fear & shock, but within a little time God began to give me His comfort & peace! I can't even imagine how bad it would be if He wasn't my comforter!
I will do another ca125 on Aug 12th -unless a symptom appears before.. I feel great! My workouts are strong, etc. But I am noticing that I need a nap during the day because I "melt down" & am having trouble staying awake past 9pm -which is something I remember happening the first time-perhaps just worry
Are you on Tomaxifen now? How long are you in remission this time?
Do you feel good -need any fitness or nutrituion info -that's my biggest hobby....
I'll be praying for you...
susan

• Reply

• By Jane4
• Posted July 21, 2008 at 10:50 am
• Report post

Hi Susan,
I finished my last round of chemo (cisplatin and gemzar) at the end of April, so I guess I'm at about 3 months remission. Not too long, but I too am thanking God for every day that I feel good, and can enjoy my family, friends, work and surroundings. For my mental health, and to be prepared for whatever comes my way, I am trying to accept my condition as chronic, and am hoping for a full year of good health before another recurrence. Other people don't like to hear that, but I need to set some realistic expectations. Anything beyond that is a gift.
I am getting back into working out, going some yoga, pilates, circuit training and hiking. I usually get in some combination about 4x per week. My hope is to get back into shape, and be strong if I have to fight this fight again.
I also met with a nutritionist at the Huntsman Cancer Center, in SLC, where I've been treated. She gave me some good advice. Mostly the basic - everything in moderation, but she did add more emphasis on fruits and veggies (don't we all know that), and suggested I eat a bit more whole grains.
As part of the wellness programs and Huntsman, I'm also going to meet with someone for a fitness assessment and to get exercise recommendations in early Aug.

But, I'm open to any suggestions you may have!
I'm praying for you too!

Hugs,
Laura

• Reply

• By Susan5
• Posted July 21, 2008 at 11:16 am
• Report post

Hi Laura:
Your attitude sounds awesome & your approach is right up my alley. I also need realistic expectations - back in Jan06 when dx my doc said it would be a chronic disease & to stay strong to battle it...
After 6 rounds of the IP/IV chemo I actually thought I might have defied the odds; won't really know till the next ca125 -but perhaps not. Your attitude and way of dealing with it -I think will work for me.
As long as I keep busy with work, fitness -which makes me feel so good -and family/friends -it's good!
What do you do? Do you work full or part time?
How has your office been about any time you've needed to take off? I'm a self-employed -homebased business - bookkeeping and payroll service. I've cut back to about 30 hrs a week which seems to work well.
I'm 53 and still have a teen at home -soon to turn 17
What about you?
I agree with your nutritionist; more fruits and vegies
and lots more whole grains; I do a lot of frozen fruits -like strawberries and blueberries -let them thaw & put over yogurt, etc. I just put up a crockpot with Morning Star vegie meatballs (mama mia meatballs) and a 1/2 bag of fresh baby spinach and jar of sauce
we'll put it over some whole wheat pasta or make meatball subs with melted cheese. So good!! Very healthy!! Ask any healthy nutritional ques you want -that' one of my major interests. I'm very involved at our ymca -work out there almost every day -and love to help those just getting started into a more healthful lifestyle.
Great to share with you....
Will pray that you get at least your healthy year and more!! Getting strong is your best bet -along with prayer!!
luv
susan

• Reply

• By joseph2
• Posted July 22, 2008 at 3:26 am
• Report post

I think it's prudent to monitor with an eye to pushing for a CT Scan even with a CA 125 under 35, if it's going up by more than three points at a time between testing intervals. I'm also curious about the ability of the new test, Ovasure, to detect recurrence.

However, I also want to remind you that a couple of things could force it to go up without a recurrence present.

One is an increase in sexual activity or even being tested within a few days of a gyne examination.

But another that really surprised me: a re-calibration of the measuring machine! We heard from someone at the hospital who said that the lab had re-calibrated the measuring device, and an "old 10" was equal to a "new 11" and an "old 20" was a "new 23", etc. The higher the count, the more the recalibration affected the discrepancy.

Whatever turns out to be the case, best of wishes and best of luck.

• Reply

• By Nancy2627
• Posted July 22, 2008 at 8:58 am
• Report post

Hello, I have been treated for my 1st reoccurence of stage
IV OC. I was initially dx'd in 2005. I have been getting chemo for a full year and a few months with short breaks
here and there. I currently am on Taxol and Avastin.
My tumor marker was at first in the 60's and then it went
down to 27. I was so happy with 27 and so was my dr.
He said I was responding well to the chemo. I looked good and felt good. As much as can be expected while getting
chemo every 3 weeks. But yesterday my dr told me my
tumor marker went up to 43. But he wasn't alarmed
because he said I am getting chemo next week and
that will probably make it go down again. He didn't
present it as a negative at all.

It just goes to show how individual the tumor marker
is and how it means different things to different people
and different doctors. I am so glad to be alive each day
as it comes. I look at each day as a gift. I feel I wouldn't
be alive today if I hadn't been getting chemo.

Of course I also believe that I get alot of help from God.
I feel he carries me often because I will be really anxious
about the chemo and then I'll have it and the anxiety
is gone. It is a miracle. God bless all of you.
Sincerely, Nancy

• Reply

• By Luckyx4
• Posted October 13, 2008 at 7:11 pm
• Report post

Well this is the first time l've ever joined a group like this but l hope l can give some hope and encouragement to other ladies.
l'm lucky and live in the uk. l have had Cancer 4 times but l'm extremly fit good looking and feel like a million dollars.
My first cancer was breast cancer with axillary node involvement. l had a radical mastectomy followed by six courses of chemo and 28 years later l'm still here.
My second cancer was Ovarian cancer stage 3C in 2002. l had the usual operation where 'everything was removed' followed by six courses of chemo and my CA 125 remained at 14 for four and a half years. Then it started to rise and reached 169 before l had another four courses of chemo. The marker droped to 20 and remained there until june 2008 and started to rise again at the moment it's 94.
The interesting thing about these reoccurances is that l have had no symptoms and no evidence of re-occuring disease has been seen on any Ultra sound, CT Scan, PET Scans or other tumour marker blood tests. l have recently had a Laparoscopy and biopsies and they were negative!!!!! why then is the CA125 going higher and higher isn't it fasinating. l feel l've had everything poked, pulled, measured or a needle stuck in it. l still feel so well but like yourselves have been brain washed into thinking cancer must be treated early but what can the poor doctors do with me. They call me the woman of mystery.....l must admit l like that he! he!
So has anyone experienced this? l would love to hear your comments.

• Reply

• By chelle64
• Posted November 18, 2008 at 6:12 pm
• Report post

Hi Lucky,
I was dx in 9-07 with 111c. I had IV and IP treatments, the last was 3-08. My ca125 was 55 after all treatments but evenually came down to 3o for one month. I had laporoscopy when I had my ip port removed and all biopsies came back negative. My onc/gyn said I was not going to have a normal ca125. My normal may be 55. It went to from 30 to 69 in two months. Two months ago I had a clear ct and a CLEAR PET with a 69. Today I got back results of 142 for my ca125. My Dr. has ordered a ct and a pet. I feel great but unfortunately I'm not sure that has a lot to do with it. I meet with my doctor friday to go over the ct I will take Thurs. I am truly dumbfounded. Please write back.
Chelle

• Reply

Add to the discussion