Rise in CA 125
Guess I just felt like venting, thanks for listening.
Comments
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I will be praying for you
I will be praying for you
Anne0 -
My oncologist said CA125 could fluctuate as much as 5 pointsAnneBehymer said:I will be praying for you
I will be praying for you
Anne
My oncologist said CA125 could fluctuate as much as 5 points in any given DAY for the majority of people. With CA125, it's the RANGE and a sharp SPIKE that could matter, not just today's number. 14 is still a normal CA125 that a person without cancer could have. There is nothing good for you in anticipating trouble, only worry.
Try not to stress on the small numbers like this. My CA125 is currently over 11,0000 and I'm STABLE and on a chemo break and feeling good. The number doesn't scare me at all. Just a number. Please try not to let it rob you of the joy of every day. Every time you let cancer dominate your thoughts and actions, cancer wins. But if you can 'flip it the finger' and walk away from it to do something fun, YOU win. (((((hugs)))))0 -
I totally understand that
I totally understand that it's hard to not be concerned about that number. I struggle with that myself. But, my oncologist is one that actually hates running those because he feels they cause unnecessary stress. He said if he had his way about it he wouldn't run it until there were other symptoms that made him feel it merited it. One of my friends has a ca-125 that averages from about 40 to 45 all the time and they have never found cancer in her. They've kept an eye on her for the past 20 years because of this but other than the number there is no evidence of any disease. The lowest mine got was 20 and it stayed there for a few months but in June it went back up to 197 and as of yet they can't find anything.
Like I said, I totally understand the challenge of not letting that number grab a hold of you and constantly be on your mind. I pray you will have some peace of mind.0 -
Thank you everyone for your replieswfisaac said:I totally understand that
I totally understand that it's hard to not be concerned about that number. I struggle with that myself. But, my oncologist is one that actually hates running those because he feels they cause unnecessary stress. He said if he had his way about it he wouldn't run it until there were other symptoms that made him feel it merited it. One of my friends has a ca-125 that averages from about 40 to 45 all the time and they have never found cancer in her. They've kept an eye on her for the past 20 years because of this but other than the number there is no evidence of any disease. The lowest mine got was 20 and it stayed there for a few months but in June it went back up to 197 and as of yet they can't find anything.
Like I said, I totally understand the challenge of not letting that number grab a hold of you and constantly be on your mind. I pray you will have some peace of mind.
Thank you everyone for taking the time to write about the CA 125 test. It means alot to know that I'm not the only one that's on chemo and the CA 125 rises. I think that the test is done to often (once a month), and it does cause stress on a person. My gyn/onc said that the test should be done every 3 months and not monthly.
I'm going for a CT scan this month, so hopefully we'll see what's what. Thank you all again.0 -
HE4antcat said:Thank you everyone for your replies
Thank you everyone for taking the time to write about the CA 125 test. It means alot to know that I'm not the only one that's on chemo and the CA 125 rises. I think that the test is done to often (once a month), and it does cause stress on a person. My gyn/onc said that the test should be done every 3 months and not monthly.
I'm going for a CT scan this month, so hopefully we'll see what's what. Thank you all again.
Maybe your doctor would also run an HE4 with your CA-125. The HE4 will rise rapidly first, IF the CA-125 is going to rise. If the HE4 does not rise, then a rise in the CA-125 should not be an indication of more cancer activity.0 -
Go for a PET/CTTethys41 said:HE4
Maybe your doctor would also run an HE4 with your CA-125. The HE4 will rise rapidly first, IF the CA-125 is going to rise. If the HE4 does not rise, then a rise in the CA-125 should not be an indication of more cancer activity.
Dear Antcat
I wouldn't waste my time on a CT in your situation...ask for a PET/CT which shows active "hypermetabolic areas" of disease.
With peritoneal cancer where the malignant lesions are often so tiny & splattered all over the peritoneum, an MRI or CT isn't sensitive enough to pick up very small (less than a cm) areas of disease. The PET/CT will scan your bones, too.
Just an opinion.
Carolen0 -
Thanks Carolencarolenk said:Go for a PET/CT
Dear Antcat
I wouldn't waste my time on a CT in your situation...ask for a PET/CT which shows active "hypermetabolic areas" of disease.
With peritoneal cancer where the malignant lesions are often so tiny & splattered all over the peritoneum, an MRI or CT isn't sensitive enough to pick up very small (less than a cm) areas of disease. The PET/CT will scan your bones, too.
Just an opinion.
Carolen
Thanks Carolen, I'm going to do that when I see my gyn/onc this week. As far as my med onc I've mentioned it to him and for whatever reason they don't do these scans where they are. I don't understand why, it's supposed to be an excellent test. So, I've given up trying to ask him to do it and will deal with my gyn/onc. I know it's an expensive test, I've had it done before and I know it's probably a lot of work for doctors as they have to justify it. But, thanks again.0 -
Thanks Tethys41Tethys41 said:HE4
Maybe your doctor would also run an HE4 with your CA-125. The HE4 will rise rapidly first, IF the CA-125 is going to rise. If the HE4 does not rise, then a rise in the CA-125 should not be an indication of more cancer activity.
I asked the med oncologist to do this test, he says "it's not necessary, and we don't do that here." I'm now going to ask my gyn/onc to do it when I see him this week and I'm going to ask him to rerun the CA 125. I've had the HE 4 done in the past. It's really upsetting when you deal with a medical oncologist and as a patient ask to have something done and they don't want to do it. I don't understand why some doctors are like that. I think some doctors resent the fact that patients become involved in their treatment decisions.0 -
I hope to be in your shoes one day !
When I read the line "I've been in chemo five years" I thought wow that could be me one day ! I totally understand your being nervous about the ca125 numbers mine are rising slowly but steadily it's hard not to worry about them . You are still in the battle so you and your drs are doing something right.
Linda is right try not to let the cancer take away anymore joy from your life than neccesary. You can't forget about the cancer but you can put it in the back of your mind while you get on with enjoying your life.
ASk your dr if it was his wife or mother would he want a pet/ct scan ? Sometimes drs just need a little push to think differently.
Thanks for your post it has given me hope
Colleen0 -
My only concern with PETs is their false readings at <1 cm.</b>Cafewoman53 said:I hope to be in your shoes one day !
When I read the line "I've been in chemo five years" I thought wow that could be me one day ! I totally understand your being nervous about the ca125 numbers mine are rising slowly but steadily it's hard not to worry about them . You are still in the battle so you and your drs are doing something right.
Linda is right try not to let the cancer take away anymore joy from your life than neccesary. You can't forget about the cancer but you can put it in the back of your mind while you get on with enjoying your life.
ASk your dr if it was his wife or mother would he want a pet/ct scan ? Sometimes drs just need a little push to think differently.
Thanks for your post it has given me hope
Colleen
Pet scans are remarkable accurate (something like 97% accurate) in lighting up tumors 1 cm or larger. But the accuracy of a PET scan, when confirmed by needle biopsy, goes down significantly, when the tumors that light up (or not) are smaller than that. So with PPC, where the cancer is seeded in tiny tumors, you may not be able to trust the results anyway. That may be a part of your oncologist's thinking. (That PET-scan accuracy study was posted here somewhere.)
I had just CT scans until I had my 1st recurrence. Then they started using CT/PET fusion scans to measure disease progression and the effectiveness of the chemo du jour. Now that I've done radioembolism on my liver mets, I was told it would be at least 5 months before a PET scan of my liver would have any validity, since it would light up like a fire ball, cancer or not, on a PET right now. So sometimes the decision between a CT or a PET scan lies in the treatments you've been getting and the area where your cancer is.0 -
Medical oncologistantcat said:Thanks Tethys41
I asked the med oncologist to do this test, he says "it's not necessary, and we don't do that here." I'm now going to ask my gyn/onc to do it when I see him this week and I'm going to ask him to rerun the CA 125. I've had the HE 4 done in the past. It's really upsetting when you deal with a medical oncologist and as a patient ask to have something done and they don't want to do it. I don't understand why some doctors are like that. I think some doctors resent the fact that patients become involved in their treatment decisions.
My experience with my medical oncologist is that she is trying to stay in good graces with the insurance company. Therefore, she doesn't order PET scans. She is using the HE4 test with me and a few other patients. I think it is because she had never heard of it before; I introduced her to it. So, I think she is experiementing with it to see if it works for her patients. It is true that some oncologists resent patients who take an active role in their treatment and contradict the doctor's advice. My medical oncologist is like that. But we have an unspoken agreement. We don't talk about it anymore. I have a nurse practitioner I work with who orders any tests I want that the oncologist won't order.0 -
rise in ca 125lindaprocopio said:My only concern with PETs is their false readings at <1 cm.</b>
Pet scans are remarkable accurate (something like 97% accurate) in lighting up tumors 1 cm or larger. But the accuracy of a PET scan, when confirmed by needle biopsy, goes down significantly, when the tumors that light up (or not) are smaller than that. So with PPC, where the cancer is seeded in tiny tumors, you may not be able to trust the results anyway. That may be a part of your oncologist's thinking. (That PET-scan accuracy study was posted here somewhere.)
I had just CT scans until I had my 1st recurrence. Then they started using CT/PET fusion scans to measure disease progression and the effectiveness of the chemo du jour. Now that I've done radioembolism on my liver mets, I was told it would be at least 5 months before a PET scan of my liver would have any validity, since it would light up like a fire ball, cancer or not, on a PET right now. So sometimes the decision between a CT or a PET scan lies in the treatments you've been getting and the area where your cancer is.
my ca 125 was in the 50s, for a few months after my onc doc stopped chemo...
my last chemo was 11/1/10
the last 3 ca125 tests have shown a rise, and the last one, taken on 8/23/11 was 170...
the next lab draw will be around 9/20/11
i 'confessed' to the onc doc RN, that i have not taken Arimidex everyday, mostly
because of the gastro problems it gives me... i already have a funky intestinal fortitude,
and am so very sensitive to many foods, chemicals, additives...etc
the onc doc switched me to tamoxifen, about a month ago, but i had a reaction to
it... im going to call it a classical allergic reaction, because i cant tolerate citrus,
and tamoxifen citrate is the official name of tamoxifen... i already have to be careful
each and everyday, or i will get a migraine...
if i have to take a post chemo med,seems like its going to have to be arimidex...
i really wonder if the post chemo meds really work, but only if you take everyday
i hate to feel such doom, but thats how i am feeling right now0 -
Other optionsdreamer007 said:rise in ca 125
my ca 125 was in the 50s, for a few months after my onc doc stopped chemo...
my last chemo was 11/1/10
the last 3 ca125 tests have shown a rise, and the last one, taken on 8/23/11 was 170...
the next lab draw will be around 9/20/11
i 'confessed' to the onc doc RN, that i have not taken Arimidex everyday, mostly
because of the gastro problems it gives me... i already have a funky intestinal fortitude,
and am so very sensitive to many foods, chemicals, additives...etc
the onc doc switched me to tamoxifen, about a month ago, but i had a reaction to
it... im going to call it a classical allergic reaction, because i cant tolerate citrus,
and tamoxifen citrate is the official name of tamoxifen... i already have to be careful
each and everyday, or i will get a migraine...
if i have to take a post chemo med,seems like its going to have to be arimidex...
i really wonder if the post chemo meds really work, but only if you take everyday
i hate to feel such doom, but thats how i am feeling right now
Dreamer,
Are you doing any integrative things to address the cancer? Have you read the book "Anti-cancer?" There are many things you can do outside of chemo and drugs to keep this disease in check. Did you know they did a study in women taking tamoxifen for breast cancer prevention and found that 5 hours of aerobic exercise per week is equally as effective as tamoxifen? Chemo and drugs are only one way to address this disease, and they compromise the immune system, the very system we rely on to keep this disease away. How can we expect to prevent recurrance if we knock down our immune system with chemo and don't take any measures to support it afterwards? I know a woman who was eating a lot of sugar after her initial chemo treatmetns to put weight on she lost during treatment. Fairly soon, she had a recurrance. After her second chemos, she made some changes in her diet and a few other changes. Although she is showing some slight indication of tumor recurrance on her CT scan, her CA-125 is low and she feels fine, and she has had a longer remission than the first time.0 -
rise in ca 125Tethys41 said:Other options
Dreamer,
Are you doing any integrative things to address the cancer? Have you read the book "Anti-cancer?" There are many things you can do outside of chemo and drugs to keep this disease in check. Did you know they did a study in women taking tamoxifen for breast cancer prevention and found that 5 hours of aerobic exercise per week is equally as effective as tamoxifen? Chemo and drugs are only one way to address this disease, and they compromise the immune system, the very system we rely on to keep this disease away. How can we expect to prevent recurrance if we knock down our immune system with chemo and don't take any measures to support it afterwards? I know a woman who was eating a lot of sugar after her initial chemo treatmetns to put weight on she lost during treatment. Fairly soon, she had a recurrance. After her second chemos, she made some changes in her diet and a few other changes. Although she is showing some slight indication of tumor recurrance on her CT scan, her CA-125 is low and she feels fine, and she has had a longer remission than the first time.
Yes, i am aware of diet and exercise being beneficial to health...that is nothing new,
unless a person has been sitting around the tv, eating cheeseburgers, and junk food
for their dietary habits, and not paying attention
About 30+ years ago, i became a "student" of nutrition, and supplements because
of the cancer that runs in my family, and for controlling my weight, feeling good in general
I was diagnosed about 10 years ago with diverticulosis, but had been having a lot
of problems with food sensitivities, and candida for a decade before that...
found a wonderful doctor, who i learned
much from, about eastern/western "medicine" and still live with what i learned from him...
i combine meds with herbal supplements, and usually do ok... i am doing everything i can
to not have any kind of surgery on my intestines, so have eaten chemical free foods
for many many years... i rarely eat out at fast food or restaurants... i usually do long walks,
try to find some hills for exercise... cant swim in chlorine, so natural water is how i can
swim
what i was getting at, in the previous post is that my onc doctor has a protocol, he is the one
taking care of my cancer problem... if i already eat very healthy, do exercise on a regular
basis, but not taking the post chemo meds, and my level keeps rising,
then he is going to say its
rising due to not taking the meds consistently, or that they just do not work for me...
in that case, i would have to do more chemo, which really takes a toll on me because
of my allergies and bad intestinal fortitude
most of my life, i have been very healthy, and i am sure that eating well and getting
outside to get a good cardio workout helped a lot...
i have a sister who died from ovca in 1998...she didnt watch her diet like i did, and when
she got diagnosed changed her dietary habits drastically, learned positive imaging
a more holistic approach, but never even got to remission
there is no sure thing that works for everyone, and from what i have learned during this
cancer ordeal is that "everyone has a cure"
there is a biological basis to disease and that is not going to change0 -
Cancer stem cell theorydreamer007 said:rise in ca 125
Yes, i am aware of diet and exercise being beneficial to health...that is nothing new,
unless a person has been sitting around the tv, eating cheeseburgers, and junk food
for their dietary habits, and not paying attention
About 30+ years ago, i became a "student" of nutrition, and supplements because
of the cancer that runs in my family, and for controlling my weight, feeling good in general
I was diagnosed about 10 years ago with diverticulosis, but had been having a lot
of problems with food sensitivities, and candida for a decade before that...
found a wonderful doctor, who i learned
much from, about eastern/western "medicine" and still live with what i learned from him...
i combine meds with herbal supplements, and usually do ok... i am doing everything i can
to not have any kind of surgery on my intestines, so have eaten chemical free foods
for many many years... i rarely eat out at fast food or restaurants... i usually do long walks,
try to find some hills for exercise... cant swim in chlorine, so natural water is how i can
swim
what i was getting at, in the previous post is that my onc doctor has a protocol, he is the one
taking care of my cancer problem... if i already eat very healthy, do exercise on a regular
basis, but not taking the post chemo meds, and my level keeps rising,
then he is going to say its
rising due to not taking the meds consistently, or that they just do not work for me...
in that case, i would have to do more chemo, which really takes a toll on me because
of my allergies and bad intestinal fortitude
most of my life, i have been very healthy, and i am sure that eating well and getting
outside to get a good cardio workout helped a lot...
i have a sister who died from ovca in 1998...she didnt watch her diet like i did, and when
she got diagnosed changed her dietary habits drastically, learned positive imaging
a more holistic approach, but never even got to remission
there is no sure thing that works for everyone, and from what i have learned during this
cancer ordeal is that "everyone has a cure"
there is a biological basis to disease and that is not going to change
I decided to put this into a new thread.0
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