CA 125 up from 21 to 41

norma2

maggie_wilson said:

norma
i'm so glad to hear the news that all is well. when i read that the methodology of the ca 125 was changed, i was quite certain that accounted for the rise. my doctor has said she looks at real spikes, and that didn't sound like a true spike to me. in any case, all's well that end's well. take good care of yourself, norma, and sweet dreams from hereon in.

sisterhood,
maggie

Thanks!!! Maggie!!!
I am hoping this finds you doing well. I am a professional worrier. Have brought it up to an olympic level. Have to use some coping techniques and reduce my anxiety by good old common sense. I did glean from my normally reticent doc that there is lots to do in case of a recurrence. That did bring me comfort. I like to have a plan "B" in place.
sisterhood and hugs, Norma

norma2

jazzy1 said:

Norma!
Wow that's some good news if you ask me. As Karen mentioned, take your docs advice and keep smiling and enjoying life!! Don't look back, only forward.

Hugs,
Jan

Jan and Karen and all of you who posted!!!
Thanks for the encouragement. You guys are the greatest. Hope we all have a wonderful Fall season.

Fayard

norma2 said:

UPDATE 8/26/2011
as of yesterday my CA 125 was 41 again. No sign of disease upon examination. Looks like the new testing at MD Anderson in Houston is more sensitve. So the 40's may be the new normal. Dr Levenbach was very positive and said "see ya in 3 months". Am 1-1/2 yrs since the end of treatment.
Best advice heard was "go out and enjoy life and quit worrying about the cancer". Going to take that advice.
Again thanks for all the well wishes. Praying for all of us. I think prayers are answered.

Great!
Norma,

I am so happy for you!

Fayard

maggie_wilson said:

norma
i'm so glad to hear the news that all is well. when i read that the methodology of the ca 125 was changed, i was quite certain that accounted for the rise. my doctor has said she looks at real spikes, and that didn't sound like a true spike to me. in any case, all's well that end's well. take good care of yourself, norma, and sweet dreams from hereon in.

sisterhood,
maggie

Maggie
Maggie,

How are you? I do not know if you have posted any updates in another discussion, but I have not read them all yet. However, I was wondering how you were doing and if your finish all the chemo treatments.

Best wishes, Fayard

maggie_wilson

lindaprocopio said:

When my CA125 hit 8500, "the number" lost its power.
I ache to see so many of my brave sisters held hostage by those damn fluctuating CA125 numbers, lying sleepless in their beds, worrying over something they cannot control. My last CA125 was around 2600, down from 8500 (8500!) June 1st right before they did the radioembolization of the right side of my liver. & tomorrow, before I get the left side of my liver radioembolized, they'll draw another CA125 so we have a new baseline going forward.

But I long ago stopped letting "the number" dominate my thoughts or torture me with "what ifs". A sharp spike in CA125 has always been an accurate indicator that I had disease progression. But IMAGINE a CA125 of 8500: wouldn't you think someone with a CA125 of 8500 was knocking on heaven's door? But almost 3 months later, I'm still going to football scrimmages and out to lunch and weeding my garden and hanging out with my hubby in the pool. LIVING. ALIVE.

Please don't forget to LIVE, all of you. Let cancer be an INTERRUPTION only in the rest of your busy vibrant lives. Don't be 'cancer girl' 100% of the time: worrying, researching, reading only cancer books, hesitating to enjoy a fabulous meal,...putting your life on hold for the 'someday' when you hope to put cancer behind you. Because many of us will never be able to turn our backs on cancer and never look back. So we better find a way to decrease cancer's power over us to spoil our sense of well-being and joy of life. Cancer may very well shorten your life, but you don't have to give it the days you have left!!

When your CA125 creeps up, remember my CA125 of 8500, and that the number didn't kill me! Just a number. Just an interruption in the rest of your life. ((((hugs))))

linda,
just to let you know i'm thinking of you especially today as you have the left side of your liver radioembolized. may all go perfectly! it takes a lot to impress me, linda, but i have to say that your basically upbeat spirit most of the time is both truly impressive and inspirational. wish i were a neighbor of yours.......

i just completed my last cycle of chemo (5th rather than 6th); and feel good about that decision. also have some lab tests to take, including the infamous ca 125, though at this point, i'm not worried. i made an appointment with a doctor in s.f. who was recommended, who does high dose iv vitamin c, plus other alternative remedies, and he seems to try to make his fees affordable, since you can be sure my insurance isn't going to pay a dime for this. his diet recommendations are somewhat similar to what we've been talking about here, l.e., no surgar, but also no potatoes of any kind, no grains! and no fluid milk. yes, on good fats: butter, coconut oil, grass fed meats, organ meats, wild seafood, fermented raw dairy products, some fruit, bone both, cod liver oil, tumeric, coq10, etc. so, clearly different as well.

i have a number of questions to ask of him, mostly about diet, but overall, am glad to be seeing him. if you're interested in checking him out at all, you can find his web site if you google thomas cowan, md, san francisco, ca., and see what you think. he has quite a website, filled with articles he's written, and the studies on which he's based his articles. he's a very, very good read. for him, it's civilization that causes cancer, so he goes back to precivilization for his diet recommendations. interesting.

enough about me, mostly linda, i'm thinking of you today, and hoping, as always, for the best. in my book, you are the best!!! please keep us posted.

sisterhood and love,
maggie

maggie_wilson

Fayard said:

Maggie
Maggie,

How are you? I do not know if you have posted any updates in another discussion, but I have not read them all yet. However, I was wondering how you were doing and if your finish all the chemo treatments.

Best wishes, Fayard

fayard,
thanx for asking about me. i did post on this thread in a note to linda, how i was doing, but i think it could be easily missed. in any case, i finished my 5th round of chemo monday, and not doing a sixth, feel good about that decision, since this last gemzar treatment really knocked me on my butt. i just couldn't stand another month of this. as i said in my previous post, i have some lab tests yet to take, plus the ca 125, then don't have to see the chemo doctor for 3 months. sounds so good. will probably have an ultrasound to check out my kidney, since it was slightly enlarged before chemo, and pressing on my ureter.

i also said i'm going to see a doctor in s.f., thomas cowan, md, (you can google him if you're interested, has a lot of interesting articles and things to say) who does high dose vitramin c iv, which is my next step, plus he has some other remedies mentioned by some women on the ovarian board. his diet is different in some ways; he believes in good fat, like butter, coconut oil, grass fed beef, etc, so are some differences from the common wisdom here. i will ask a lot of questions re: diet, but otherwise i like what he has to say. and i'm glad to be doing something to improve my heath and build up my immune system,that is not also toxic!!

thanx again for asking about me. hope you're doing ok, yourself. keep us posted,

sisterhood and hugs,
maggire

soromer

norma2 said:

UPDATE 8/26/2011
as of yesterday my CA 125 was 41 again. No sign of disease upon examination. Looks like the new testing at MD Anderson in Houston is more sensitve. So the 40's may be the new normal. Dr Levenbach was very positive and said "see ya in 3 months". Am 1-1/2 yrs since the end of treatment.
Best advice heard was "go out and enjoy life and quit worrying about the cancer". Going to take that advice.
Again thanks for all the well wishes. Praying for all of us. I think prayers are answered.

Great to hear your positive report, Norma
I am very happy for you and wish you all the best in your continued recovery!

soromer

lindaprocopio said:

When my CA125 hit 8500, "the number" lost its power.
I ache to see so many of my brave sisters held hostage by those damn fluctuating CA125 numbers, lying sleepless in their beds, worrying over something they cannot control. My last CA125 was around 2600, down from 8500 (8500!) June 1st right before they did the radioembolization of the right side of my liver. & tomorrow, before I get the left side of my liver radioembolized, they'll draw another CA125 so we have a new baseline going forward.

But I long ago stopped letting "the number" dominate my thoughts or torture me with "what ifs". A sharp spike in CA125 has always been an accurate indicator that I had disease progression. But IMAGINE a CA125 of 8500: wouldn't you think someone with a CA125 of 8500 was knocking on heaven's door? But almost 3 months later, I'm still going to football scrimmages and out to lunch and weeding my garden and hanging out with my hubby in the pool. LIVING. ALIVE.

Please don't forget to LIVE, all of you. Let cancer be an INTERRUPTION only in the rest of your busy vibrant lives. Don't be 'cancer girl' 100% of the time: worrying, researching, reading only cancer books, hesitating to enjoy a fabulous meal,...putting your life on hold for the 'someday' when you hope to put cancer behind you. Because many of us will never be able to turn our backs on cancer and never look back. So we better find a way to decrease cancer's power over us to spoil our sense of well-being and joy of life. Cancer may very well shorten your life, but you don't have to give it the days you have left!!

When your CA125 creeps up, remember my CA125 of 8500, and that the number didn't kill me! Just a number. Just an interruption in the rest of your life. ((((hugs))))

"an encounter with a diagnosis"
is the phrase my husband likes to use (not original to him, but he doesn't recall the source). Thanks, Linda, for your direct reminder here & ongoing example always to make the most of every day.

soromer

maggie_wilson said:

fayard,
thanx for asking about me. i did post on this thread in a note to linda, how i was doing, but i think it could be easily missed. in any case, i finished my 5th round of chemo monday, and not doing a sixth, feel good about that decision, since this last gemzar treatment really knocked me on my butt. i just couldn't stand another month of this. as i said in my previous post, i have some lab tests yet to take, plus the ca 125, then don't have to see the chemo doctor for 3 months. sounds so good. will probably have an ultrasound to check out my kidney, since it was slightly enlarged before chemo, and pressing on my ureter.

i also said i'm going to see a doctor in s.f., thomas cowan, md, (you can google him if you're interested, has a lot of interesting articles and things to say) who does high dose vitramin c iv, which is my next step, plus he has some other remedies mentioned by some women on the ovarian board. his diet is different in some ways; he believes in good fat, like butter, coconut oil, grass fed beef, etc, so are some differences from the common wisdom here. i will ask a lot of questions re: diet, but otherwise i like what he has to say. and i'm glad to be doing something to improve my heath and build up my immune system,that is not also toxic!!

thanx again for asking about me. hope you're doing ok, yourself. keep us posted,

sisterhood and hugs,
maggire

Best of luck with your new treatment plan, Maggie
It's so hard to figure out what is "best" for oneself. I will probably check out Cowan's site to see what he says. I hope that this treatment proves to be deeply healing for you.

sleem

norma2 said:

UPDATE 8/26/2011
as of yesterday my CA 125 was 41 again. No sign of disease upon examination. Looks like the new testing at MD Anderson in Houston is more sensitve. So the 40's may be the new normal. Dr Levenbach was very positive and said "see ya in 3 months". Am 1-1/2 yrs since the end of treatment.
Best advice heard was "go out and enjoy life and quit worrying about the cancer". Going to take that advice.
Again thanks for all the well wishes. Praying for all of us. I think prayers are answered.

6 months over: CA 125 this month
I haven't been on here in a while. We are going on and) 'doing' life. I wish I could say that this month's CA 125 at MD Anderson wasn't on mind or has been there since the methodology change jumped my CA 125 from 14 to 21. I know that sounds silly to worry, however it never had such a jump. I've previously stated my concerns on this thread. I did have a CA 125 at my local lab (w/my MDAnderson's doc's go-ahead. Quest Lab's uses different test thatn MDA. The scale on this CA 125 is over 21 in abnormal area. My test there was a result of 16 on this 21 scale. MdA is scale is '35' and with the new methodolog it was also '35' scale & w/new methodology it went to 21 from 14.
This Sept. 12th, I'll have my MDA test since 6 months back with new methodology. Speaking with my Dr., by phone, we discussed what another jump would mean & what our plan would be at that jump on this new methodlogy.

Norma, you and I are going through the same situation at MDA. I'm so glad for you that your Dr. said you are OK with 41 on this new scale.

Linda, you are a hero to me with all your information and attitude.. thank all of you to keep us thinking about each day and not a test. I do know that a baseline must be established with a change of manuafacturer of CA 125 to see what is our new "number's" over time. I don't think that my CA 125 will go backwards at this point. Usually, only chemo can do that. I'm not there at this pt.
I'll let all of you know what happens after my next visit.
Best wishes to all of you-sisters together in our common hope and support for each other.

PS I have also had posted on another thread some good links to CA 125 and its usuage. My doctors said this test is not meant for UPSC, but ovarian...however it is the only tool they have at this time... and they understand CA 125 has as many false positive, postive false accounts.
My CA 125 was 14 the first time when I was diagnosed with UPSC. So,,, it really is a crazy situation.

Peace to all of us and get out and enjoy.

norma2

sleem said:

6 months over: CA 125 this month
I haven't been on here in a while. We are going on and) 'doing' life. I wish I could say that this month's CA 125 at MD Anderson wasn't on mind or has been there since the methodology change jumped my CA 125 from 14 to 21. I know that sounds silly to worry, however it never had such a jump. I've previously stated my concerns on this thread. I did have a CA 125 at my local lab (w/my MDAnderson's doc's go-ahead. Quest Lab's uses different test thatn MDA. The scale on this CA 125 is over 21 in abnormal area. My test there was a result of 16 on this 21 scale. MdA is scale is '35' and with the new methodolog it was also '35' scale & w/new methodology it went to 21 from 14.
This Sept. 12th, I'll have my MDA test since 6 months back with new methodology. Speaking with my Dr., by phone, we discussed what another jump would mean & what our plan would be at that jump on this new methodlogy.

Norma, you and I are going through the same situation at MDA. I'm so glad for you that your Dr. said you are OK with 41 on this new scale.

Linda, you are a hero to me with all your information and attitude.. thank all of you to keep us thinking about each day and not a test. I do know that a baseline must be established with a change of manuafacturer of CA 125 to see what is our new "number's" over time. I don't think that my CA 125 will go backwards at this point. Usually, only chemo can do that. I'm not there at this pt.
I'll let all of you know what happens after my next visit.
Best wishes to all of you-sisters together in our common hope and support for each other.

PS I have also had posted on another thread some good links to CA 125 and its usuage. My doctors said this test is not meant for UPSC, but ovarian...however it is the only tool they have at this time... and they understand CA 125 has as many false positive, postive false accounts.
My CA 125 was 14 the first time when I was diagnosed with UPSC. So,,, it really is a crazy situation.

Peace to all of us and get out and enjoy.

Thanks for the responses!!!
Thanks you for the wonderful support!!
When I read the responses it makes me feel better to know we are all in this together.

Sleem...glad your CA 125 was well into the normal range. From what I have read the CA 125 numbers vary for many different reasons. Dr. Levenbach assured me on my visit the other day that things were going well. I quizzed him on the "what if???". His response was there are lots of things that can be done. I feel assured that I will be here for a while. The nasty little number for CA 125 is just a number. Like Linda said so well.

Next time you go to MDA check out the resturant in the Rotary House. Lunch there is wonderful!!!!

The Uterine Cancer Group meets once a month on Wed. I have been to several of those and they are great. Very helpful. Met Dr Lu who has done quite a bit of research on treating endometrial cancer recurrences. She and Dr Bast (the doctor I believe who was the first to promote the CA 125 test) have a new paper published recently. I will have to look up the info and post it for others to read.


Lets keep on living life and not worry about this too much. Thanks for the response. Norma

daisy366

norma2 said:

Thanks for the responses!!!
Thanks you for the wonderful support!!
When I read the responses it makes me feel better to know we are all in this together.

Sleem...glad your CA 125 was well into the normal range. From what I have read the CA 125 numbers vary for many different reasons. Dr. Levenbach assured me on my visit the other day that things were going well. I quizzed him on the "what if???". His response was there are lots of things that can be done. I feel assured that I will be here for a while. The nasty little number for CA 125 is just a number. Like Linda said so well.

Next time you go to MDA check out the resturant in the Rotary House. Lunch there is wonderful!!!!

The Uterine Cancer Group meets once a month on Wed. I have been to several of those and they are great. Very helpful. Met Dr Lu who has done quite a bit of research on treating endometrial cancer recurrences. She and Dr Bast (the doctor I believe who was the first to promote the CA 125 test) have a new paper published recently. I will have to look up the info and post it for others to read.


Lets keep on living life and not worry about this too much. Thanks for the response. Norma

confused about different ca125 tests
I don't understand the comment that Quest and MDAnderson have different test results for ca125. Isn't this standardized so results are consistent?

norma2

daisy366 said:

confused about different ca125 tests
I don't understand the comment that Quest and MDAnderson have different test results for ca125. Isn't this standardized so results are consistent?

Wish I knew more...
Mary Ann, wish I understood more about these tests and could answer your question. Bottom line is whether the numbers increase or decrease. So a steady number is a good thing. At least that is my take on it. Maybe others may have some insight.
Hope all is well with you. Norma

Gracegoi

norma2 said:

Wish I knew more...
Mary Ann, wish I understood more about these tests and could answer your question. Bottom line is whether the numbers increase or decrease. So a steady number is a good thing. At least that is my take on it. Maybe others may have some insight.
Hope all is well with you. Norma

to add to the confusion
I'm waiting my second CA125 test. I just googled ca125 for UPSC and found a 2010 abstract hypothising a rise by 5 or 10 in the lower range may indicate reoccurance.

Great!

I don't see how having a CT scan would show any disease progression at such a low number.

Wish I had not found this abstract.

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=48243

daisy366

Gracegoi said:

to add to the confusion
I'm waiting my second CA125 test. I just googled ca125 for UPSC and found a 2010 abstract hypothising a rise by 5 or 10 in the lower range may indicate reoccurance.

Great!

I don't see how having a CT scan would show any disease progression at such a low number.

Wish I had not found this abstract.

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=48243

Grace
I've been in this club for over 3 years, so for whatever this is worth - please don't fret over this article. 5-10 is usually a small rise, tests can vary slightly because nothing is so accurate (there is always a margin of error), docs look at trends rather than single tests. And important word in the abstract is "may".

I encourage you to do yourself a favor stop worrying (wasted energy). Take some deep breaths and enjoy the lovely days of late summer. I, like you will have my blood work done soon. there's nothing you or I can do till we are told the results (but unless my numbers are bad, I will not be told my number - my choice).

My best to you. Mary Ann

JoAnnDK

daisy366 said:

Grace
I've been in this club for over 3 years, so for whatever this is worth - please don't fret over this article. 5-10 is usually a small rise, tests can vary slightly because nothing is so accurate (there is always a margin of error), docs look at trends rather than single tests. And important word in the abstract is "may".

I encourage you to do yourself a favor stop worrying (wasted energy). Take some deep breaths and enjoy the lovely days of late summer. I, like you will have my blood work done soon. there's nothing you or I can do till we are told the results (but unless my numbers are bad, I will not be told my number - my choice).

My best to you. Mary Ann

CA 125 significance unclear
Grace, please focus on this sentence: "The clinical significance of CA-125 as a tumor marker in UPSC is unclear." I posted a very recent article about this last week, taken from one of the oncology group's reports. Of course, now that I want to find it, I cannot.

Fayard

maggie_wilson said:

fayard,
thanx for asking about me. i did post on this thread in a note to linda, how i was doing, but i think it could be easily missed. in any case, i finished my 5th round of chemo monday, and not doing a sixth, feel good about that decision, since this last gemzar treatment really knocked me on my butt. i just couldn't stand another month of this. as i said in my previous post, i have some lab tests yet to take, plus the ca 125, then don't have to see the chemo doctor for 3 months. sounds so good. will probably have an ultrasound to check out my kidney, since it was slightly enlarged before chemo, and pressing on my ureter.

i also said i'm going to see a doctor in s.f., thomas cowan, md, (you can google him if you're interested, has a lot of interesting articles and things to say) who does high dose vitramin c iv, which is my next step, plus he has some other remedies mentioned by some women on the ovarian board. his diet is different in some ways; he believes in good fat, like butter, coconut oil, grass fed beef, etc, so are some differences from the common wisdom here. i will ask a lot of questions re: diet, but otherwise i like what he has to say. and i'm glad to be doing something to improve my heath and build up my immune system,that is not also toxic!!

thanx again for asking about me. hope you're doing ok, yourself. keep us posted,

sisterhood and hugs,
maggire

Maggie
I am just reading your posting. I am back working, and I do not have as much time to check the site. By now, you should be feeling a lot better and, your blood counts should have gotten up.

I finished my treatment in July. I am feeling better every day; however, I started to have joint paint everywhere. I saw my onco about 2 weeks ago, and he told me to give it a 5 to 6 more weeks. I am feeling a little less pain now, and I am hopping it will go away completely as time passes.

I also got my port taken out about 3 weeks ago. I still have the stitches!
My hair is growing so fast, and so are my eyebrows and eyelashes.Although it just a bunch of fuzzy hair for now, I am glad it is growing.

I am definitely going to Google your doctor; however, I do not each any kind of meat except for fish.
My next appointment is beginning of November.

Hugs, Fayard