I believe this is good news...but we will see. I am 55, in very good health, slim, eat right, exercise, don't smoke, but like the rest of us was targeted by OVC. From all I read, it's hard to figure out where I am at in terms of a long survival...In July, I had an enlarged lymph node - no spread of cancer other than the ovaries, uterus, with some abdomial fluid so had a total hysterecomy with omentium removed as well. Surgeon said he got 96% and the rest was just gravel, which chemo should take care of. I believe it was grade III, but he lowered it to a high II or very low III. Pprior to a the hysterecomy, at my highest the CT-125 number was at 1,300, but since and after three Taxol/carbo treatments, my number has fallen to 52! Three more treatments to go. Do you think I'll see single digits? I would be so thrilled. Reading has just made me so confused! Lastly, what happens when it's all over with - how many of you have changed your diets, and/or what have you done to try and prevent any reocurrance? I find limited resources on that part.
SUZ
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CT-125 Number - where the heck do I stand?
18 replies
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- By FavoriteAunt
- Posted October 7, 2009 at 9:32 am
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Congratulations! You've done very well and it sounds like you are on a path to a good remission. If your numbers have dropped so dramatically, why can't they go to single digits? You should be very happy and optimistic.
Regarding recurrence, I personally do not believe there is anything you can do to really prevent recurrence. Ovca is a disease that comes back, much as we hate hearing it. If there was such a formula, we'd all do it and have no worries. But, you can eat a good healthy diet, drink fluids, be active and enjoy your life. I really wish you the very best. Enjoy your accomplishment!
- By lifeisgrand
- Posted October 7, 2009 at 10:38 am
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This disease can drive you insane slowly but surely :)
Here's one thing I'm learning... do what you can to improve your quality of life and try to have a positive attitude, enjoy the small things and try not to worry about the things that you have no control over.... specifically the CA125. Downward movement is a good thing. You cannot compare to anyone but yourself. You need to complete the chemo and see where your baseline falls. That is what is normal for you. As long as it's not going up (and I don't mean by a few points) then you are headed in the right directions.
I would also suggest saving any supplements for after the chemo is done. You can improve the diet, drink plenty of fluids, get some exercise. All helps to strength you and make you feel better overall.
Good luck! and hope to see you around here.
- By SUZ909
- Posted October 7, 2009 at 11:06 am
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I can't seem to find any information on supplements - other than possibly Vit. D. What do you do, or what does your doctor suggest. I guess I haven't gotten that far yet.....What a long journey.
I'm hoping with two more treatments to go I will see much lower CT-125 numbers. The last test was done prior to treatment number 3.
- By zircons
- Posted October 7, 2009 at 3:47 pm
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I have not changed my diet. The remission time is different for all of us. Mine was three years. I never went down to single digits. I know some people who have been in remission for 13 and 50 years. Others I know, have never been in remission. I go every three months for an exam and CA125.
- By Patricia123
- Posted October 7, 2009 at 3:53 pm
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You are ontrack,,I have decided I will face whatever when it hits and otherwise just enjoy each day I feel good. I don't know what else to do other than that.
I have imagined that a doc would say to me "if you take this infusion or pill, once a week, and it will never return" and I would jump up and down and scream "sign me up"
Ithink a day is coming when we see big breakthrus,,I just pray it is soon in lthe next year or two so we can all see the benefit. There was a big one in Melanoma today,,why not us? Why not now?
Meanwhile you are doing great,,enjoy!
- By Mom82
- Posted October 8, 2009 at 10:00 am
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"how many of you have changed your diets, and/or what have you done to try and prevent any reocurrance? I find limited resources on that part."
There are a lot of resources on that part, start by reading:
"Anti Cancer - A new way of life" Dr. David Servan-Schreiber
and
"Life over Cancer" Dr. Keith Block
I believe that a drastic lifestyle change and diet can help. There are nutrients that help that can be simply integrated in your everyday meals. Green tea, turmeric, ginger, and many more. Eliminating all processed food, sodas, soft drinks, meat (unless organic, but even organic, limited amounts), choose the right fish (not farmed and thoes with high omega-3's). A lot of vegetables, some fruits like berries - especially blueberries - again only organic. NO SUGAR. Low glycemic foods only - no white pasta, rice, etc. Even whole wheat is high glycemic and to be avoided, etc..
In summary: eat only wholesome foods, period.
You are lucky to have a low grade cancer - maybe due to the fact that as you say you eat healthy already, but maybe there is more that you can do. Now is the time to do everything you can to avoid reocurrence.
Another avenue I would explore is contacting the Block Center in Chicago. Make an appointment and set up a program.
Good luck to you.
- By Mom82
- Posted October 8, 2009 at 10:05 am
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<<Regarding recurrence, I personally do not believe there is anything you can do to really prevent recurrence. Ovca is a disease that comes back, much as we hate hearing it.>>
Yes there is a lot that one can at least try and sometimes it works. Starts with lifestyle change and diet. It is certainly well worth trying and won't harm anyone.
- By opgirl
- Posted October 8, 2009 at 10:07 am
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I have found two books that I have found to be very helpful regarding diet and the foods that may help. "Anti Cancer, a new way of life" by David Servan-Schreiber, MD, Phd and "Foods to Fight Cancer" by Richard Beliveau, PhD. and Denis Gingras, PhD. Both excellent resources.
Also I have been taking B6 to help combat the neuropathy. It really seems to help.
My CA 125 is a constant source of stress with numbers going up and down. In reading many people reply about their numbers, it gives me comfort to know that everyone truly is different.
Love to talk about nutrition, foods and their benefits, not that I am an expert, it is just a subject that interests me.
Take care.
- By loveoneanother
- Posted October 8, 2009 at 10:53 am
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Hi,SUZ909 I had ca125 at the highes 3286 before surgery and after a year of chemo and remission for a couple of months it went down to 7. but now i have reaccurance and the number has went up to 211 but after 2 more chemo treatments it has gone down to 52 so the numbers are different for everyone, but like some of the ladies say the cancer can come back and most likely will when it is ovarian. But like most of us we go foward and live the best way we can. I personally dont care about the whole cancer thing most days it is not even on my mind. I do most everything I did before except at a slower pace. It dosen't have me yet. I think your on the right track with exercize and eating right. Keep it up live life to the fullest. God bless you Paula
- By SUZ909
- Posted October 8, 2009 at 12:17 pm
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Wow! You had scary high numbers in the beginning! But then down to a 7 - amazing, just amazing and wonderful. It would seem to me that your oncologist has caught the problem once again. As long as problems can be limited, we'll be fine (I think!). The more I read, it seems that if the number stay fairly low then we're in a good place. I find most days I don't focus on my situation, but when I am not feeling my best, the stress of it all creeps in. I'm a true believer in positive thinking, but boy oh boy, does a simple test result set you in reverse of where you were~
Suz
- By quacker
- Posted October 8, 2009 at 11:34 pm
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Another excellent book is "Beating Cancer with Nutrition" by Patrick Quillin. I didn't change my diet after the first course of chemo and the cancer came back very quickly. I have radically changed my eating habits, and just about everything else, and the cancer seems to be stable. I am resistant now to all chemotherapies.
- By momanderson920
- Posted October 9, 2009 at 7:38 am
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At the rate you are going, I think you could see single digits but I think anything under 35 is considered normal.
- By Sukey
- Posted October 9, 2009 at 12:10 pm
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I was stage IV and after 5 taxol/carbo treatments my number went to single digits and stayed there for 5 + years. Everyone's markers react uniquely to their physiology but my hunch is you're in for a long remission. Enjoy life. Every day is a gift
- By smac5
- Posted October 9, 2009 at 2:51 pm
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I've just has my second clear scan, and my CA125 has never been in single digits, even while I'm now on Avastin. My docs say everyone different, and studies show that they should no longer treat a rise in the number in and of itself--they have seen people yo-yo up to 50 and back down without chemo or any signs of growths. Good to know, as I'm bound to get nervous every time it gets checked.
- By SUZ909
- Posted October 10, 2009 at 9:28 am
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Dear All:
Thank you so much for all your encouraging words. It is so nice not to feel alone in the journey. I just had my kidney stent removed yesterday and feel 90% better - what a drain that was on my body, add that to recovering from chemo. Talked to my onoc. and he is aiming for single digits, which I'm happy that he is so proactive. Right now, the new deal is the tingling in the hands and feet. He said he could change the chemo (Taxol/Carbo) to something less toxic, but really wants to stay the course as the numbers have dropped so. Do any of you have this experience? I don't want the feeling to become permanent, which is a possibility according to him.....
Always something, isn't there? Have a wonderful Saturday - Rainy and cold here in Chicago!
- By docpat
- Posted October 13, 2009 at 3:58 pm
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It is hard to say if you will see single digits. I never did. My CA125 prior to surgery was 1600. I reached 22 after the 3rd chemo but went back up to 75 and now is down to 32. I also would love to see single digits but doubt if I ever will. I had my last chemo in Nov 2008.
No one seems to know for sure what causes the CA125 to be elevated, but it is either inflamtion, infection, or cancer.
Hang in there and good luck.
- By Milashka
- Posted October 24, 2009 at 6:09 pm
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I had serous papillary adenocarcinoma. During chemo a dietician came around to counsel us on healthy lifestyle. I asked her is there anything I shouldn't eat, she said, I can eat anything I like but obviously stay away from fat and sugar. Cancer feeds on sugar, but can't do much with protein, so you want to up your protein and all sugar (including fruit juices, at least some).
She also said that only with the serous papillary variety one should not eat any dairy. Ha! She didn't know that's what I had. So I cut out pretty much all dairy - I used to consume massive quantities of cheese, yoghurt, ice cream, etc prior to diagnosis and maybe that's why it grew so fast. I was feeding it. Ice cream of course is a three-strike no-no: fat, sugar, dairy.
I have done a lot of research and the things considered not so great, that you should try to cut out or eat in moderation (I don't think on slice of pie will bring the cancer back, just don't make a habit of it) are:
Peanuts, pineapple, dairy products, sweets/sugar, high fat.
Re supplements, I asked my oncologist and he said not to go overboard, but he recommended at least one daily good multivitamin, and he really wants me to take it. He cautioned against too many supplements as they may interfere with the effectiveness of chemo.
I am a chocoholic so I was not able to entirely omit chocolate from my diet, but I was conscious of how much I consumed and always counteracted it with a good meal good protein. I take a potent multivitamin and have been taking selenium for the last few months, which is supposed to be helpful.
- By Milashka
- Posted October 24, 2009 at 6:14 pm
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BTW my CA 125 numbers were 980 pre-op, 263 post-op, 63 after the first chemo, 19 after the second chemo, and from then on between 9 (only once) and 13 for three full years. This year in January the number was 11, 14 in April, 16 in July, and 26 in October. They will check it again in two months and I am preparing for a recurrence down the road.
There are women who never fall into the single digits. For me, my range was 9-13. Even at 16 my onc considered it my normal range (9-19) and was not at all worried. 26 is out of my range and 10-point increase that he takes seriously.
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