CA-125 Up
Buckets of Teal Hugs and Prayers,
Terry
Comments
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Same boat
Dear Terry, It seems we are in the same boat. I had 20 months of chemo and really wanted a rest. That is why I was given the option of the anti estrogen pill. I have been on it since Oct. 2008 and have really enjoyed the rest. It has brought my rising CA15 from 84 to 50 and my oncologist is pleased and willing to keep it there as long as the CT scans are not showing anything. Wait until the results of the scan. I know you are disappointed as I felt the same way when the Taxol maintenance dose quit on me. There is a statistical degree of error in the CA125 of 3-5 points to keep in mind too. Hang in there with me. Take a deep breath. It may not be as dark as you think today.
A big special hug for a special lady, Saundra0 -
Just came from my oncologist, and something he said...
I just came from an appointment with my chemo oncologist, trying to schedule my 6th and hopefully final round of carboplatin/pacitaxol, a challenge since I have had to delay treatment my last 2 rounds because my platelets keep tanking. But my oncologist did say something today that you may take comfort in: We were talking about my follow-up maintenance after I finish my radiation, and he said they use 3 things to monitor whether the cancer has come back. 1.) CA-125; 2.) Ct-scan; & 3.) pelvic exam). He said that, although he believes that CA-125 is a fairly reliable marker for me, of the 3 things they watch, CA-125 is the least important or telling. He said that a rising CA-125 may trigger additional testing for me, but in and of itself, wouldn't plunge me back into chemo. So try not to worry until after your CT-scan. Easier said than done, I know. ((((Terry))))0 -
CA-125
Terry,
My daughter, who does not have OVCA ,her CA125 is 40 and ct scans are clear....so do not put to much stock in your CA125 ....wait to see Ct scan...there are so many reason your CA125 could fluxuate(sp) It is good to vent and I am glad you have "US" to do so.
I will say an extra prayer....let us know about your Ct scan on 3/04
((Hugs))
Joan0 -
Numbers
Thanks , Linda thanks for the encouraging words. Saundra I'm going to ask my gyn/onc about estrogen pills.Thanks Joan for the extra prayers.I know I get carried away with these numbers, they can make me go crazy.I keep praying that everyday that there is a cure fo us and thank God I'm here to enjoy every minute I get to be with my family. My husband and I will be married 6 years in July.I'm 58 and have 2 daughters that I'm very close too.I also have a 19 year old grandson.Now my husband has 11 grandchilren all under the age of 8.We babysit whenever I'm up to it.I just want to be around for a long time.I just get very depressed. I live in Pennsylvania and it's cold here, I need some sun. We have a camper and were planning on going out west this summer but I don't see that happening.My gyn/onc has been treating me by my number so far because my exams are normal and the last ct-scan was clear.Sorry for all the ranting.Thanks for being there for me.
Hugs and Prayers, Terry0 -
UTIs?ladyjogger31 said:Numbers
Thanks , Linda thanks for the encouraging words. Saundra I'm going to ask my gyn/onc about estrogen pills.Thanks Joan for the extra prayers.I know I get carried away with these numbers, they can make me go crazy.I keep praying that everyday that there is a cure fo us and thank God I'm here to enjoy every minute I get to be with my family. My husband and I will be married 6 years in July.I'm 58 and have 2 daughters that I'm very close too.I also have a 19 year old grandson.Now my husband has 11 grandchilren all under the age of 8.We babysit whenever I'm up to it.I just want to be around for a long time.I just get very depressed. I live in Pennsylvania and it's cold here, I need some sun. We have a camper and were planning on going out west this summer but I don't see that happening.My gyn/onc has been treating me by my number so far because my exams are normal and the last ct-scan was clear.Sorry for all the ranting.Thanks for being there for me.
Hugs and Prayers, Terry
Hi Terry,
I live in PA, too, and I could really use more sun, too!
You said you've had 3 UTIs recently? Has anyone suggested that may be causing havoc with your CA-125? Any infection/inflammation can. My oncologist said that arthritis (inflammation) can affect it, and I notice they've put a question on the information sheet at the oncologist's office asking if you have any dental problems on the day you're there. I forgot to ask them the last time I was there what the significance of that is; I suspected a problem I was having with a tooth root was what kept my CA-125 from going much lower than 17 for most of the five years after my surgery/chemo.
Ask about ANTI-estrogen pills. I've been taking Tamoxifen for almost a year now, and my last reading was 46, down from 284 in June last year.
Maybe you can head to the Jersey shore or someplace warm (and not too far) when summer comes. We're having a little warm up, and I know all of the animals are anxious for spring, too!
Sue0 -
CA 125 gowing up
Hi, I'm new. My operation for stage 111c ovarian cancer was in April 2007. I had a resection (10 inches of colon) Radical hysterectomy ,5 months of chemo., debulking,neutropenia, 12 blood transfusions, 6 paresentis, 3 platelet transfusions and I have been NED ever since September 2007. I have gained back 47 pounds and my hair. My Ca 125 has remained steady around 6. Well, until today. My doctor called and said it was 24.9. I'm really scared. It tripled in 3 months. He said to wait a month and recheck maybe inflammation of some sort. I also have anemia (first time in a long time) and a high ANA titer(for autoimmune disease). I had just started to get back into life and now this. Does anyone have any knowlege of this causing an elevated CA 125? I'm 55 and also have 3 grandchildren whom I want to see grow. I live in Florida, not all that it is cracked up to be. But I am lucky to have sunshine when depressed.0 -
Don't let the CA-125 get to you!Timber said:CA 125 gowing up
Hi, I'm new. My operation for stage 111c ovarian cancer was in April 2007. I had a resection (10 inches of colon) Radical hysterectomy ,5 months of chemo., debulking,neutropenia, 12 blood transfusions, 6 paresentis, 3 platelet transfusions and I have been NED ever since September 2007. I have gained back 47 pounds and my hair. My Ca 125 has remained steady around 6. Well, until today. My doctor called and said it was 24.9. I'm really scared. It tripled in 3 months. He said to wait a month and recheck maybe inflammation of some sort. I also have anemia (first time in a long time) and a high ANA titer(for autoimmune disease). I had just started to get back into life and now this. Does anyone have any knowlege of this causing an elevated CA 125? I'm 55 and also have 3 grandchildren whom I want to see grow. I live in Florida, not all that it is cracked up to be. But I am lucky to have sunshine when depressed.
Hi Timber,
If you read through a lot of these posts, you'll come to see how insignificant CA-125 readings can be. Mine started going up after my five year surgery anniversary, and my oncologist prescribed tamoxifen for me to try to lower my estrogen levels. It seems to be working for me, but I guess the cancer has to be estrogen receptive for it to work.
At any rate, don't let the number get to you. If you feel well, concentrate on that, and let the docs worry about the numbers! I had two inconclusive CAT scans last year, and one PET scan that was, too, and my CA-125 capped out at 284 in June last year.
I hope this helps!
Sue0 -
CA 125 going upgroundeffect said:Don't let the CA-125 get to you!
Hi Timber,
If you read through a lot of these posts, you'll come to see how insignificant CA-125 readings can be. Mine started going up after my five year surgery anniversary, and my oncologist prescribed tamoxifen for me to try to lower my estrogen levels. It seems to be working for me, but I guess the cancer has to be estrogen receptive for it to work.
At any rate, don't let the number get to you. If you feel well, concentrate on that, and let the docs worry about the numbers! I had two inconclusive CAT scans last year, and one PET scan that was, too, and my CA-125 capped out at 284 in June last year.
I hope this helps!
Sue
Hi Sue,
Thanks for the encouraging advice. How long have you been a survivor? It sounds like over 5 years which is supposed to be the magic number. I am trying to get there. Every time I get these CA 125 tests my life seems to stop. I have resisted any kind of antidepressant but this really pushed me over the edge this time. The farther I get from surgery the harder it gets to deal with ever having to go through chemo again. But , I would rather live so I will do what it takes. Thank you again Sue. I'll let you know how it turns out. Oh by the way, my son used to live in Norristown PA. Is that near you?
Kathy0 -
Hang in there
Terry, I so understand how you feel. When my numbers started to climb, I tried so hard not to think about it, but it did get me down. And never-ending UTI's are annoying. I had that after my surgery in 07. It took me awhile to figure out it wasn't post-op pain. My prayers for you today that the numbers will go down, and your focus on God' love for you can fill you with peace.
Warm hugs,
kathleen:)0 -
Hang In there with mekayandok said:Hang in there
Terry, I so understand how you feel. When my numbers started to climb, I tried so hard not to think about it, but it did get me down. And never-ending UTI's are annoying. I had that after my surgery in 07. It took me awhile to figure out it wasn't post-op pain. My prayers for you today that the numbers will go down, and your focus on God' love for you can fill you with peace.
Warm hugs,
kathleen:)
My count was 18000. wow I took carbo from May to Dec and it worked well then my count went up and I took 2 month break and now its 18000. So now I am on Etoposide. I was hoping to get this down below 100 we shall see what the etopiside does. I hope your chemo brings it down and stablizes. It is frustrating though, you do well then bang again.
Prayers and Hugs
Sandy0 -
CA-125green50 said:Hang In there with me
My count was 18000. wow I took carbo from May to Dec and it worked well then my count went up and I took 2 month break and now its 18000. So now I am on Etoposide. I was hoping to get this down below 100 we shall see what the etopiside does. I hope your chemo brings it down and stablizes. It is frustrating though, you do well then bang again.
Prayers and Hugs
Sandy
Hi Sandy,
Are you saying your CA-125 is at 18,000 now? I've never heard of anyones being that high. Mine was 13,000 BEFORE surgery. What stage are you? I'm a 3c had surgery (debulking)8 treatments of carbo/taxol and now Monday will be my 6th treatment of Doxil.
Sending you positive thoughts your way and hope that the etopiside takes your numbers way down.
Hugs, Prayers and Love,
Terry0 -
Comparing numbersladyjogger31 said:CA-125
Hi Sandy,
Are you saying your CA-125 is at 18,000 now? I've never heard of anyones being that high. Mine was 13,000 BEFORE surgery. What stage are you? I'm a 3c had surgery (debulking)8 treatments of carbo/taxol and now Monday will be my 6th treatment of Doxil.
Sending you positive thoughts your way and hope that the etopiside takes your numbers way down.
Hugs, Prayers and Love,
Terry
Mine was 1,800 before surgery for stage 3c. That just shows you the numbers are just relative to the person. It's a good thing doctors don't base everything on that test. They look at CT scans and physical examinations as well. I'd hate to think if my numbers went up alot and then I had to take drugs I didn't need if, in fact, my cancer hadn't returned. Someone on this site recently mentioned that their cancer came back yet the CA-125 was only 40. I know it's supposed to be 35 or lower but you'd think 40 would be ok. But if I started getting the familiar signs like bloating, pain, indigestion, urinary problems, etc., I'd be concerned no matter what my CA-125 test was at!0 -
Yes 18000 nowDreamdove said:Comparing numbers
Mine was 1,800 before surgery for stage 3c. That just shows you the numbers are just relative to the person. It's a good thing doctors don't base everything on that test. They look at CT scans and physical examinations as well. I'd hate to think if my numbers went up alot and then I had to take drugs I didn't need if, in fact, my cancer hadn't returned. Someone on this site recently mentioned that their cancer came back yet the CA-125 was only 40. I know it's supposed to be 35 or lower but you'd think 40 would be ok. But if I started getting the familiar signs like bloating, pain, indigestion, urinary problems, etc., I'd be concerned no matter what my CA-125 test was at!
Some women have high CA125 counts and small tumors and some have large tumors small counts and some have small of both. As the dr explained to me he goes by the count going down with chemo. I believe mine was 84 before surgery and I was stage 3. But Dreamdove is right everyone is different The Ca125 is the cancer cells raising and not the numbers but the count going down is what they look at and I have had CT scans showing small tumors size of end of your finger except the one at spleen is two fingers big but I consider it still small. As long as it comes down and CTs show them small thats what counts for me. My dr has a patient who has 25000 CA125 Count and small tumors. I will feel lucky if I can get mine below 100. Some women stablize at 50s and 80s even tho 35 is so called normal.
Prayers and Hugs
Sandy0 -
CA 125green50 said:Yes 18000 now
Some women have high CA125 counts and small tumors and some have large tumors small counts and some have small of both. As the dr explained to me he goes by the count going down with chemo. I believe mine was 84 before surgery and I was stage 3. But Dreamdove is right everyone is different The Ca125 is the cancer cells raising and not the numbers but the count going down is what they look at and I have had CT scans showing small tumors size of end of your finger except the one at spleen is two fingers big but I consider it still small. As long as it comes down and CTs show them small thats what counts for me. My dr has a patient who has 25000 CA125 Count and small tumors. I will feel lucky if I can get mine below 100. Some women stablize at 50s and 80s even tho 35 is so called normal.
Prayers and Hugs
Sandy
Isn't it crazy how we all have different number? High or low - it DOES NOT matter because whatever it is it's OUR number and they freak us out. Mine was recently 1.2 - yes, 1.2 - and then my doctor said she thought it was a fluke and so what do I do? Start to worry that maybe it's 12 or 21 and they typed in the number wrong so I'm having it redrawn on the 6th.
My oncologist said if your number goes down with surgery and chemo then it is what you most rely on - as soon as it starts to rise, the closer I'll be monitored. She doesn't believe in the CT scans because the scans, presumably, will NOT show a tumor that is smaller than 2 cm in size - so they could be there but we won't know it any way and it's a waste of money.
Of course the pelvic exam is always important and they know your body inside and out, literally, so can tell when something is going on that way also.
Terry I hope you are having some peace of mind until you have your CT done on the 4th. We are all out here praying for you. I do find it amazing though that so many of the warriors are suffering recurrences at the same time - just another reason that this support group is so vital. We all need it.
Take care everyone and know I'm thinking of all of you. Hugs!!
Kris0 -
Anti estrogen
Terry, it is ANTI-estrogen...removes all estrogen from your body. It works on about 1/3rd of us like it does with breast cancer. I am sure that the cancer must feed on estrogen for it to work. It is holding my CA125 at around 50, brought it down from 84. It is expensive...about $10 a pill. The CT scans I get are two pronged. One with contrast dye in the veins, and one with the barium drink and enema. I was told that it will not show anything under one half a centimeter. Different scanners may have different intensity....I don't know. ♡ Saundra0
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