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Slow-Rising CA125

Susan5
  • By Susan5
  • Posted July 5, 2008 at 7:38 am · 28 replies
  • In Recurrence
  • Shared with the public
0 Recommendations

Anyone had experience with a slow rising CA125?
Last IP/IV chemo June06; ca125s been 6-8s for 2 yrs; all 6 week intervals; then 17 & 4wks later 21....
I'm a bit scared! Everything I read says if it begins to rise a recurrence is in the midst..
Anyone had it do this then come back down?
I know it fluctuates but mine's not done this for 2 yrs
I guess I just want to be prepared -the docs just don't want to say anything -just that the rise is small and still within range -although so many of the women in our group had full recurrences with lower #s.....
I wonder if this "in range to 35" really means anything!
Thanks
susan

Explore topics in this discussion:

Exercise Cancer Taxol Surgery Avastin Breast cancer Ovarian cancer Anxiety Pain Mental health

28 replies

chelle64

Hi Lucky,
I have a little bad and a little good news. My ct scan showed one node that was just at 2cm. It was the only thing on the scan. I will be having a pet on Friday to see if it light up. I will be having surgery on Dec. 10 to remove it. My ca 125 is 142, my doctor thinks my normal number is around 40-50. Anyway you look at it , it is up.
I still don't have any symtoms, I am just mentally exshausted as I am sure you are.
When can you get your pet scan? It picks up much smaller abnormalites than the ct. I am sure it will help the doctors. I wil be praying for you!
Love, Michelle

Luckyx4

Hi Susan
l'm fine getting ready for Christmas and trying not to think about what's going to happen next!!!! He! he! what a daft thing to say.
l'm going back to work over the next few weeks only a couple of days a week but that will help divert my thoughts for a while.
l know a lot of patients here in the UK who have had Gemcitabine / Carbo is that the same as you're having? lt's a good combination. We don't see much of Avastin as there are issues about the funding. l don't think it wil be long now though before it is available to all but it has to be give the ok by National institute of Clinical Excellence. ln a nut shell, this is a committee who gives the ok for drugs to be licensed to be used in th UK.
Well it's 02.49hrs here, just let the dogs out as they were platting their legs....so now back to sleep.
night night
god bless
Lucky

Carmeta

Having been diagnosed in September 2006, with a CA-125 of 219, which climbed over 260 after surgery and before my first chemo, my nadir after front line chemo was 18 (and that lasted only a month). Earlier this week it had fallen from 164 to 103 and I was ecstatic, but the CT showed progression of my tumors. Each chemo buys me about six months survival, and there are more drugs I can try if the Topotecan I start on November 24 doesn't stop the progression. Ladies, this disease can be treated, but if you were staged at III or IV, we have a statistical change of less than 25% of exceeding a five-year survival after diagnosis. In other words, no one is promising us a cure. Despite this I am happy and thankful for each day I feel healthy and appreciative of life as long as it lasts. I just ignore the little gremlins that are growing inside of me. The worst part, I know, is that my illness makes others sad and anxious, especially knowing that there will be unavoidable pain. But it would be dishonest to shield them from the truths of this disease that has earned the name "silent killer." Worrying about ca-125 is the least of it, sort of like being afraid of hair loss.

Susan5

Hi Lucky :
Thanks for asking --
I'm feeling fine except for a rising ca125 (was 127 this week) and 4 extra pounds and a little bloated belly.
I just got back from cycling class and am also still working and doing everything else I do....
I think my docs are scheduling a Pet Scan -will be the first one I've ever had - for sometime soon....
My doc wants me to go into a study he's doing; carbo and gemzar and 1/2 of us will also get avistan...
We'll see - I'm guessing I'll hear from the docs today or Monday...
How are you today???
Luv
susan

Luckyx4

lt's strange we are both experiencing the same. My first re-occurance my CA125 went to 169 and l was still getting negative scans. My doc said he thought l'd got a small gland or blood vessel between the muscles of my bowel which was still too small to be picked up by the scans!!!!!
l hope the doc hasn't got anything grot to say to you. One thing that's positive is that your PET scan was negative and that was only two months ago so if it is anything surely it's only going to be small and it can be treated quickly. l shall keep everything crossed for you and l've asked my angel to stay with you today.
God bless and let me know how you get on.
Lucky xx

linden

Hi, I was DX Jan 2008 with debulking and 8 rounds of carbo/tax. Completed 6/30/08 with CA125 at 30. 8/10/08 it had moved up to 50, three weeks later 62, then up to 66 in Sept. My Dr. put me on 20 mg tamoxifien, and after 1 month CA125 moved to 67, after 2nd month moved to 50. The hope was that it wouldn't go up. All Xrays and CT scans are clear. I am still on tamoxifien and will see Dr. first week of Dec. and if it stays in the same range, will continue with tamoxifien.
Prayers and hugs to all. Linden

Susan5

Hi Chelle:
I am happy that you feel so good!! But I know it's very frustrating and scary!
My ca125 was 96 two weeks ago; with still no symptoms & perfect CT Scans. Tomorrow I'll have results of last ca125 and I think the doc wants me to have my first Pet Scan (haven't had one of those yet)
This is such a strange disease ...
I think the hardest part is having patience and waiting for test results and the "what do we do now" bit....
It's kind of made me a little crazy too..
Please post a note Friday after you get your results from this Cat and Pet scan -I'd like to know how you are doing!!
I hope and pray that it's just your numbers going wacky....
Luv and peace to you
susan

Luckyx4

Hi Chelle
Thought l'd just see how your doing. Whats your marker doing now? Mine has risen to 108 but l still feel fine and still working. l don't think l will get any scans until January due to funding issues.
Did you go for any scans, if so how did you get on.
Lots of hugs
Lucky

chelle64

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

Luckyx4

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.

Nancy2627

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

joseph2

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.

Susan5

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

Jane4

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

Susan5

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

Jane4

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.

momanderson920

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!

Susan5

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

Susan5

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

Jane4

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!

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