CA125 Levels and Relation to Remission/Survivability
My wife, Cindy, is still in remission after 7 cycles of maintenance Taxol Chemotherapy!
Her CA125 level has hovered between 1-3. This has prompted me to wonder if a low CA125 has any correlation to delayed disease progression and overall survivability.
Do any of you good ladies know of any correlated studies? Doctor discussions/consultations?
I saw this from the UK back in 2003/04:
http://annonc.oxfordjournals.org/content/16/1/47.full
But the number of ladies in the research seems low to have any definitive conclusion.
The article basically says time of remission can be associated with the nadir CA125 level after/during chemo. It also mentioned a CA125 level of 70 or below at the time of the third chemo cycle is another positive predictor to outcomes.
So far Cindy has met the positive thresholds:
At 3rd Neoadjuvant Chemo = 17
Nadir CA125 - 1
Comments
-
Great News.
I am happy for your wife and you about her CA-125 results. I am unable to answer your question, but I am anxious to hear what other members responses are to your question. I know Carlene (Hissy_Fitz) who is also an ovarian cancer survivor is a source for great information related to our disease. Continued blessings to you. Thank you for supporting your wife in this journey of life.0 -
I don't know of any studies,
I don't know of any studies, but my doctor says that any number below 10 is actually the same number. In other words, he sees no advantage in a CA125 of 2, as opposed to 9. I have "met" women online who recurred, even though their CA125 went as low as your wife's. And I know women who have never had OC, but whose CA125 tested at 12 or 15. That's their norm, and they have no reason to be concerned. Since we don't know what our pre-cancer baseline was, it's hard to say what the numbers mean now. This is one reason the CA125 is not a good diagnostic tool for OC. Also, the higher the number pre-treatment, the longer it will take for it to normalize. Mine started at 4,000 and surgery alone cut it in half, but some women are diagnosed at stage IV and their CA125 never went into the thousands. I guess what I'm tring to say is that a patient's CA125 is really only specific to her, and comparing it to anyone else's is not a very accurate guage of her prognosis.
I do recall a study that said women whose CA125 reaches a single digit nadir following first line chemo have longer remissions.
My CA125 was 53.9 two weeks after my 3rd treatment, but it was 245 just a month earlier (after my second treatment). I don't know what it was on the date of my 3rd treatment, as my doctor has it checked two weeks after chemo. (After my 4th treatment it was 19.)There must be something to the third treatment theory, though, because the vaccine trial I am in requires either a sub-optimal debulking, or an elevated CA125 following the third chemo. Their goal is to enroll patients who would not be expected to achieve spontaneous, ever-after remission.
The chances of a recurrence while Cindy is on Taxol is almost nil. I also did Taxol maintenance, and had very good results. I credit it with giving me a year of good health. I was diagnosed 9/17/2009 and my CA125 is still in the single digits. My numbers were lowere while I was on the Taxol, though they have not varied more than 2 points, either way, since I finished treatment in January.
I get another CA125 drawn tomorrow. I just had a CT scan this past week, and it was "perfect."
I try not to read too much into any of the studies. They can scare you to death, and they can break your heart. Frankly, I think it's a crap shoot. There is just no really accurate way to predict who will recur and who won't, who will last 10 or 15 years, and who will not last 5. Recurrence is the norm. That much is an established fact. I go from panic mode to prayer mode, to scientific mode (looking for the best treatment, the best doctor, clinical trials, etc). It's exhausting and probably not very productive in the end, but it's the way I am.
Recurrence is not the end of the road, although I agree that it would be nice not to have one. Right now I am doing what I can (which is ver little) to dodge the recurrence bullet. If/when a recurrence is confirmed, I will move on to whatever I can do that might prolong my life. There are many women who are leading very happy and productive lives, in spite of recurrent OC. The longest survivor I have "met" (online) is almost 20 years post-remission treatment. There are many more, I'm sure, but she is in her 70's and women that age don't tend to be computer saavy, so we don't hear from them as much.
Carlene0 -
Another caseHissy_Fitz said:I don't know of any studies,
I don't know of any studies, but my doctor says that any number below 10 is actually the same number. In other words, he sees no advantage in a CA125 of 2, as opposed to 9. I have "met" women online who recurred, even though their CA125 went as low as your wife's. And I know women who have never had OC, but whose CA125 tested at 12 or 15. That's their norm, and they have no reason to be concerned. Since we don't know what our pre-cancer baseline was, it's hard to say what the numbers mean now. This is one reason the CA125 is not a good diagnostic tool for OC. Also, the higher the number pre-treatment, the longer it will take for it to normalize. Mine started at 4,000 and surgery alone cut it in half, but some women are diagnosed at stage IV and their CA125 never went into the thousands. I guess what I'm tring to say is that a patient's CA125 is really only specific to her, and comparing it to anyone else's is not a very accurate guage of her prognosis.
I do recall a study that said women whose CA125 reaches a single digit nadir following first line chemo have longer remissions.
My CA125 was 53.9 two weeks after my 3rd treatment, but it was 245 just a month earlier (after my second treatment). I don't know what it was on the date of my 3rd treatment, as my doctor has it checked two weeks after chemo. (After my 4th treatment it was 19.)There must be something to the third treatment theory, though, because the vaccine trial I am in requires either a sub-optimal debulking, or an elevated CA125 following the third chemo. Their goal is to enroll patients who would not be expected to achieve spontaneous, ever-after remission.
The chances of a recurrence while Cindy is on Taxol is almost nil. I also did Taxol maintenance, and had very good results. I credit it with giving me a year of good health. I was diagnosed 9/17/2009 and my CA125 is still in the single digits. My numbers were lowere while I was on the Taxol, though they have not varied more than 2 points, either way, since I finished treatment in January.
I get another CA125 drawn tomorrow. I just had a CT scan this past week, and it was "perfect."
I try not to read too much into any of the studies. They can scare you to death, and they can break your heart. Frankly, I think it's a crap shoot. There is just no really accurate way to predict who will recur and who won't, who will last 10 or 15 years, and who will not last 5. Recurrence is the norm. That much is an established fact. I go from panic mode to prayer mode, to scientific mode (looking for the best treatment, the best doctor, clinical trials, etc). It's exhausting and probably not very productive in the end, but it's the way I am.
Recurrence is not the end of the road, although I agree that it would be nice not to have one. Right now I am doing what I can (which is ver little) to dodge the recurrence bullet. If/when a recurrence is confirmed, I will move on to whatever I can do that might prolong my life. There are many women who are leading very happy and productive lives, in spite of recurrent OC. The longest survivor I have "met" (online) is almost 20 years post-remission treatment. There are many more, I'm sure, but she is in her 70's and women that age don't tend to be computer saavy, so we don't hear from them as much.
Carlene
Congratulations on your wife's success!
I have been trying to make sense of all of this information on CA-125 for months.
The way the whole numbers game went for me was that my CA-125 peaked AFTER surgery (at 17.000) when I was under the influence of a big-time inflammatory response from the C. diff. infection that I acquired in the hospital. While I was recovering from the bowel resection, the tumor activity was also at an all-time high (tumors were all over the place in the pelvis/abdomen--some were about the size of my fist).
I had two rounds of carbo & four taxol treatments when the infection was diagnosed and treated. Had bad chemo reaction and stopped chemo.
Infection gone 3 weeks later; also palpable tumors gone & ascites gone.
Chemo break for 7 weeks; continued IV ascorbic acid twice/week with various nutritional supplements (too numerous to mention).
Three weeks after chemo (#2 carbo/#4 taxol), the CA-125 was 244 (on break).
Five weeks after chemo, the CA-125 = 70.9 (on break).
Seven weeks after chemo, the CA-125 = 23.9 (on break).
Chemo resumed using carbo alone--hair growing back.
After #3 carbo, CA-125 = 12.6
After #4 carbo, CA-125 = 6.5 & MRI shows no active cancer. Absolute neutrophils 1.11.
The low "absolute neutrophils" indicate immunosuppression. I have come to see the immunosuppression that goes with chemo as a somewhat therapeutic effect as the inflammatory response is suppressed with the rest of the immune system. A tricky balancing act to be sure.
The CA-125 is not only a reflection of cancer activity but also of inflammatory activity--both are problematic. As cancer promotes itself thru inflammatory mediators, I am thinking that an anti-inflammatory diet should be mandatory not optional for all of us.0 -
The numbers bothers me too.
The numbers bothers me too. My numbers have never fallen below 34 and now after my second round of chemo has finished my numbers are 122 and my oncologist is very pleased with that result. My numbers also do not relate to my CT scan where all major organs like liver, lungs, brain, kidney, pancreas etc are clear. No bone lesions, all lymph node clear. So, I wonder what is making the numbers high??
My oncologist said the CT scan is a much better indicator for our disease than the numbers
Tina0 -
ca125
Pre surgery I was 720, post 70. After 3 rounds carbo/taxol I was down to 11. After 5 rounds I was down to 8. I had my illeostomy reversed after 5 rounds and that surgery included a 'second look' as well as IP port placement. All the biopsy from that surgery were clear. I went on to receive 3 additional rounds of IP cisplat/ IV taxol. My post treatment ca125 was 7. I had a recurrence 7 to 8 months post treatment with a ca125 of 10. The area was 13mm in length on my colon and discovered via PET scan as the CT portion of that scan was clear.
GOOD LUCK!0 -
Good to hear from you, Nancy591nancy591 said:ca125
Pre surgery I was 720, post 70. After 3 rounds carbo/taxol I was down to 11. After 5 rounds I was down to 8. I had my illeostomy reversed after 5 rounds and that surgery included a 'second look' as well as IP port placement. All the biopsy from that surgery were clear. I went on to receive 3 additional rounds of IP cisplat/ IV taxol. My post treatment ca125 was 7. I had a recurrence 7 to 8 months post treatment with a ca125 of 10. The area was 13mm in length on my colon and discovered via PET scan as the CT portion of that scan was clear.
GOOD LUCK!
Nancy: How can the oncologist be sure that you don't have something else going on in your colon? Is there any point in having a colonoscopy done?
It's nice to see you again. Happy Easter!0 -
late 2009LaundryQueen said:Good to hear from you, Nancy591
Nancy: How can the oncologist be sure that you don't have something else going on in your colon? Is there any point in having a colonoscopy done?
It's nice to see you again. Happy Easter!
This was late 2009. I did have a colonoscopy done. Confirmed to be recurrent ovca. Started Doxil in Jan 2010. Been on chemo ever since with little to no success.0 -
Nancy....what was it thatnancy591 said:ca125
Pre surgery I was 720, post 70. After 3 rounds carbo/taxol I was down to 11. After 5 rounds I was down to 8. I had my illeostomy reversed after 5 rounds and that surgery included a 'second look' as well as IP port placement. All the biopsy from that surgery were clear. I went on to receive 3 additional rounds of IP cisplat/ IV taxol. My post treatment ca125 was 7. I had a recurrence 7 to 8 months post treatment with a ca125 of 10. The area was 13mm in length on my colon and discovered via PET scan as the CT portion of that scan was clear.
GOOD LUCK!
Nancy....what was it that prompted your doctor to order a PET scan? Was it because your CA125 had risen from 7 to 10?
Carlene0 -
bowelHissy_Fitz said:Nancy....what was it that
Nancy....what was it that prompted your doctor to order a PET scan? Was it because your CA125 had risen from 7 to 10?
Carlene
no, I was having bowel spasms that mimic bowel obstruction. I was having these episodes monthly for about 4 months in a row. I went to the ER each time and they would do an xray and no obstruction was ever seen. Excess gas in the colon was really all that was seen. On a routine visit to my surgeon I mentioned it and she said if it happened again she would want a PET/CT. I did have another event so I got the PETscan. Ironically the episodes had stopped after that last one in October 2009 and I never had another one since. In hindsight I don't believe the episodes were related to that little area on my colon. My one oncologist believes I would have went undetected at least until my 1yr mark...but ...who knows.0 -
Quick drop in CA125Hissy_Fitz said:I don't know of any studies,
I don't know of any studies, but my doctor says that any number below 10 is actually the same number. In other words, he sees no advantage in a CA125 of 2, as opposed to 9. I have "met" women online who recurred, even though their CA125 went as low as your wife's. And I know women who have never had OC, but whose CA125 tested at 12 or 15. That's their norm, and they have no reason to be concerned. Since we don't know what our pre-cancer baseline was, it's hard to say what the numbers mean now. This is one reason the CA125 is not a good diagnostic tool for OC. Also, the higher the number pre-treatment, the longer it will take for it to normalize. Mine started at 4,000 and surgery alone cut it in half, but some women are diagnosed at stage IV and their CA125 never went into the thousands. I guess what I'm tring to say is that a patient's CA125 is really only specific to her, and comparing it to anyone else's is not a very accurate guage of her prognosis.
I do recall a study that said women whose CA125 reaches a single digit nadir following first line chemo have longer remissions.
My CA125 was 53.9 two weeks after my 3rd treatment, but it was 245 just a month earlier (after my second treatment). I don't know what it was on the date of my 3rd treatment, as my doctor has it checked two weeks after chemo. (After my 4th treatment it was 19.)There must be something to the third treatment theory, though, because the vaccine trial I am in requires either a sub-optimal debulking, or an elevated CA125 following the third chemo. Their goal is to enroll patients who would not be expected to achieve spontaneous, ever-after remission.
The chances of a recurrence while Cindy is on Taxol is almost nil. I also did Taxol maintenance, and had very good results. I credit it with giving me a year of good health. I was diagnosed 9/17/2009 and my CA125 is still in the single digits. My numbers were lowere while I was on the Taxol, though they have not varied more than 2 points, either way, since I finished treatment in January.
I get another CA125 drawn tomorrow. I just had a CT scan this past week, and it was "perfect."
I try not to read too much into any of the studies. They can scare you to death, and they can break your heart. Frankly, I think it's a crap shoot. There is just no really accurate way to predict who will recur and who won't, who will last 10 or 15 years, and who will not last 5. Recurrence is the norm. That much is an established fact. I go from panic mode to prayer mode, to scientific mode (looking for the best treatment, the best doctor, clinical trials, etc). It's exhausting and probably not very productive in the end, but it's the way I am.
Recurrence is not the end of the road, although I agree that it would be nice not to have one. Right now I am doing what I can (which is ver little) to dodge the recurrence bullet. If/when a recurrence is confirmed, I will move on to whatever I can do that might prolong my life. There are many women who are leading very happy and productive lives, in spite of recurrent OC. The longest survivor I have "met" (online) is almost 20 years post-remission treatment. There are many more, I'm sure, but she is in her 70's and women that age don't tend to be computer saavy, so we don't hear from them as much.
Carlene
My 3C ovarian cancer was discovered mid February at the end of a colonoscopy, when a tumor perforated my colon. I was told the cancer was "all over my abdomen." I was given an illeostomy and started chemo 5 days after I was out of the hospital. My initial CA125 was 1587. After the first round it was 818. After the second, down to 137. I've completed round 3, and my oncologist expects me to be into the normal range. Like others I wonder if this means I am going into remission quickly. I hope so! I'm having the debulking operation, I believe, after my 4th round of chemo, maybe before. Where does cancer GO when it's dying from the chemo? How much harm is done to the digestive system? How can we nourish ourselves properly when the chemo seems to prohibit anything remotely resembling normal digestion? Having one's small intestine emptying into a bag at the waist makes one acutely aware of digestive abnormalities!0 -
Carolyn....when cancercarolyn45 said:Quick drop in CA125
My 3C ovarian cancer was discovered mid February at the end of a colonoscopy, when a tumor perforated my colon. I was told the cancer was "all over my abdomen." I was given an illeostomy and started chemo 5 days after I was out of the hospital. My initial CA125 was 1587. After the first round it was 818. After the second, down to 137. I've completed round 3, and my oncologist expects me to be into the normal range. Like others I wonder if this means I am going into remission quickly. I hope so! I'm having the debulking operation, I believe, after my 4th round of chemo, maybe before. Where does cancer GO when it's dying from the chemo? How much harm is done to the digestive system? How can we nourish ourselves properly when the chemo seems to prohibit anything remotely resembling normal digestion? Having one's small intestine emptying into a bag at the waist makes one acutely aware of digestive abnormalities!
Carolyn....when cancer responds to chemo, I don't think it "goes" anywhere. The solid tumors shrink and hopefully disappear, just like any surface abnormality, like a boil, for instance. Cancer begins as a single cell that mutates and begins to multiply like mad. Chemotherapy kills fast-growing cells, and as the cells die, I suspect they are simply and harmlessly reabsorbed into the body.
Chemo is harder on some people than on others. I had a very easy time of it, after the first couple of treatments. My digestion functioned quite well, except for a tendency toward constipation, so I can't really answer your questions regarding nutrition.
My grandson has had two colostomies - the first when he was just 2 days old. I understand what you mean about that whole issue.
I didn't know until I read his surgical notes that my doctor had considered doing an irreversible colostomy at the time of my de-bulking surgery. That was a real eye-opener, to say the least.
Carlene0 -
Where does cancer go?carolyn45 said:Quick drop in CA125
My 3C ovarian cancer was discovered mid February at the end of a colonoscopy, when a tumor perforated my colon. I was told the cancer was "all over my abdomen." I was given an illeostomy and started chemo 5 days after I was out of the hospital. My initial CA125 was 1587. After the first round it was 818. After the second, down to 137. I've completed round 3, and my oncologist expects me to be into the normal range. Like others I wonder if this means I am going into remission quickly. I hope so! I'm having the debulking operation, I believe, after my 4th round of chemo, maybe before. Where does cancer GO when it's dying from the chemo? How much harm is done to the digestive system? How can we nourish ourselves properly when the chemo seems to prohibit anything remotely resembling normal digestion? Having one's small intestine emptying into a bag at the waist makes one acutely aware of digestive abnormalities!
Carolyn: Like any other toxin in your body, when cancer dies, it is "eaten up" (by phagocytosis) by white blood cells, carried through the lymphatic vessels to the heart, then mixed with blood and taken to the liver where it circulates twice. The liver has to use various mechanisms to de-toxify the dead cells (and chemo) before converting the "junk" into bile (no wonder bile tastes so bitter).
The bile travels through bile ducts in the liver and is held in the gall bladder where it is concentrated and waits until you eat something with fat/oil. Then the gall bladder dumps the bile into the first part of the small intesting where it emulsifies the fat/oil so that you can digest it along with all of the fat-soluble vitamins/nutrients.
The liver/kidneys fare so much better when we are well-hydrated during this process.
There is an apt expression: "The solution to pollution is dilution."
You and others who are dealing with an ileostomy do need to seriously consider how to stay hydrated and how to maximize on the fat-soluble nutrition/assimilation during the process of healing. It sounds like you are already thinking in this direction--I hope you can find someone locally to help you.0 -
That sounds just like me.Tina Brown said:The numbers bothers me too.
The numbers bothers me too. My numbers have never fallen below 34 and now after my second round of chemo has finished my numbers are 122 and my oncologist is very pleased with that result. My numbers also do not relate to my CT scan where all major organs like liver, lungs, brain, kidney, pancreas etc are clear. No bone lesions, all lymph node clear. So, I wonder what is making the numbers high??
My oncologist said the CT scan is a much better indicator for our disease than the numbers
Tina
That sounds just like me. My scans remain clear but my CA-125 just won't behave. The lowest it has been is 21, and that just lasted a couple of months. It managed to get down to 180 after 5 treatments of gemzar, then started back up again. I just started Doxil on Friday. It's up to 704 now. I really feel good, but I just can't seem to get that CA-125 under control. My oncologist also told me that the most important thing is how you feel and the scans. So, I'm still hopeful!
Beth0 -
Numbers
I too cannot say what my "normal" CA125 would be. My sister's is 17 and no cancer. My daughter's is 4 and no cancer.
Since no people are created alike then it would be hard to really know what is really normal. ☺
Great news on your wife's remission.
Living for Eternity anyways,
Libby ☺0
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