CA 125 for ovarian cancer
rising CA 125 after first cycle with taxol+carboplatin?? any one has same?should I worry please answer me, before surgery,it was 4000,then after surgery it went down to 800, now after first cycle of paclitaxel+carboplatin it is 1300????
I appreciate any kind soul who can answer me frankly and advice me,thank you
Comments
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ca125
hi,
i noticed no one answered you...no one replied to me either
my mom is has a similar problem but do not despair at your numbers after jsut one cycle
my mom is going on cycle 6 and her ca125 is still above 35...same regimen carbo/tax.
it is stressful but you just have to let the meds work a little more. when the cells are killed they can release antigens and it takes time for the blood to catch up...sometimes they can go up initially i was told.
its easy to say dont worry....i worry everyday....its still too soon....try to be patient as possible...it will come dowm
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Medical and Trinity
Y'all hang on...this board has been running slow for several weeks. I'm from the Uterine board and agree with Pam. The CA 125 is just a general marker and is not even that to some people. The CA 125 can jump after or during a simple head cold, stomach ache, tooth ache...any inflamation in the body at all including just your body's own natural make up. It goes up and down when it darn well wants to! We live by those numbers, but as some will tell you here they had normal CA 125 and had stage 4, grade c and active tumers/nodes. I am sorry no one has replied...don't feel ignored. With Spring and Summer here a lot of people take their breaks from northern winter or a break from chemo/cancer when they get the chance. I invite you both over to the Uterine board where a lot of us(including me) have cancer that is amost identical to OC and is treated the same way! Best, Debrajo
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God bless all of us & give us courage to face the day!
Good Friday morning Medical, Pam, Trinity & Debrajo
I’ve had trouble with CSN and its SECURITY ERROR message for a month or so now. That’s ever since they “improved” the site. Ha! Improved…not hardly. Last night I had an urgent message I needed to get to another fella. He had sent me a private msg. and when I answered and tried to “submit” it, IT WOULD NOT GO! And yes, I sent another msg. to the “techs?” And if they read this, they will know that they have at least a dozen messages from me. I’m now putting HELP in my text, saying please find a tech that can fix this and then give him/her a raise! They’ve offered a couple of suggestions that did NOT work. Lately, I’m not even getting a reply. And if anyone monitoring this site is reading this particular letter, please try again. I’m not the only one having this problem, but mine is most often when I try to submit a letter with some particular web reference in it. It is oh so maddening when this happens. Our time is valuable, and when we take the time to answer someone and this site “kicks it out”, all I can do is scream! Believe me, I have much more to do than sit at my computer all day and play “solitaire!” We cancer patients don’t have a minute to waste!
Anyway, one message did not go last night, but another one did. I had doctor’s appointments yesterday myself, and did not sit down to peruse the site till late. I did send Trinity a letter. I don’t know about other ladies here, but many of them are probably overwhelmed with their diagnosis and not “feeling so hot”, and probably don’t feel like answering on any given day. I have unexplainable aches & pains and it goes along with having Stage IV cancer. And even this morning, I have an unexplainable pain in my left shoulder blade. And yes, I keep in constant touch with my oncologist, but he is not a “handyman” and can’t “fix” everything! So my CT scheduled for June 2 will tell me more. And yes, when you wake up with a new pain in a new place, you have to “fight the fear” to “misdiagnose” the problem. And so you wait. A lot of this cancer is about “loitering in God’s waiting room” if you ask me!
And no doubt the ladies read the posts here, and perhaps don’t feel like they have anything much to offer so they just read it and say a silent prayer. And really, there are a lot of questions and not very many answers once you’ve been diagnosed with Ovarian cancer. Some cancers are easier to treat than others. And with a Stage IV, hope for a cure is usually illusive, and only by the grace of God if there is one, because there is no known cure for Stage IV Ovarian Cancer. There are treatments that can temporarily lower the CA125 number but no specific FIX! Hate to say it, but as I told “Trinity” in her letter that I was able to post about 1:15 A.M., IT IS WHAT IT IS.
The most I can do is ask the Lord to give me the will to live, the physical strength to endure and the inner peace that only He can give to keep me living “above the circumstances.” It goes without saying for all of us, and Debrajo I appreciate your visiting this board, and helping out. You do a good job at that. I see your name often. All of us are pretty much in the same boat. And we’re all trying to help each other keep our heads above water. So keep checking on us. Thanks, and I will see once more if I can get my letter to post to Medical. And also by way of explanation for any newbies “or oldies”, there’s not necessarily any patient “assigned to the duty desk” when another patient writes in. All of us have varied schedules, but I do know that if everyone of us didn’t care, we wouldn’t even bother to sit down and say hello. We are “all in the same boat”, and some days the waves are higher than in others.
Much love and hope to all who “read” here and to all who “lurk” here. God help us all to live and love another day.
Loretta - Peritoneal Carcinomatosis/Ovarian Cancer Stage IV
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Just tried to post my 5-10 ltr to "Medical" & it failed 2GO!debrajo said:Medical and Trinity
Y'all hang on...this board has been running slow for several weeks. I'm from the Uterine board and agree with Pam. The CA 125 is just a general marker and is not even that to some people. The CA 125 can jump after or during a simple head cold, stomach ache, tooth ache...any inflamation in the body at all including just your body's own natural make up. It goes up and down when it darn well wants to! We live by those numbers, but as some will tell you here they had normal CA 125 and had stage 4, grade c and active tumers/nodes. I am sorry no one has replied...don't feel ignored. With Spring and Summer here a lot of people take their breaks from northern winter or a break from chemo/cancer when they get the chance. I invite you both over to the Uterine board where a lot of us(including me) have cancer that is amost identical to OC and is treated the same way! Best, Debrajo
Hey Debrajo,
Just tried to send my April 10th reply to Medical. It has web addresses in it and it would not submit! When they don't show, it is like wanting to visit someone but you don't know where they live! I think it's important to put the web address before I quote from their page.
Loretta
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Hey Miss Loretta!
Ty...and I knew you were having a heck of a lot of tec problems. You are a wealth of information and are so appreciated! I know I had looked at these boards and others back in the day and got little responce then, but after a Google search I came across Linda P.'s post about UPSC "Is anyone else out there"? and I checked and became a member of CSN that day! If I see a post go unanswered for more that a day, I jump in even if I don't know a thing about their problems because I don't want them to "go away"! Thank God for this group....all of them! Hope this site gets your post problems solved because I know you are out there trying to get through! Best, Debrajo
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CA125
The CA125 is a very fickle number. Many non-cancer related things can cause it to elevate, like a cold, infection or inflammation. Mine skyrocketed after my first chemo treatment, too. The test measures cancer cell proteins. The treatment has killed so many cancer cells your body can't get rid of the debris quickly enough, so the test number goes up. I'm betting you will see the number fall as time goes on. Just always remember, the CA125 is not the absolute definition of the extent of your disease. It's just one fickle clue for your doctor to use.
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Medical-Still can't post my reply 2U-Here's a portion of it
foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf
“UNDERSTANDING CA125 levels
“… CA 125 is a substance found in the blood called a glycoprotein (a sugar associated protein). It is commonly referred to as a “biomarker” — or “tumor marker” — because it provides information about the biological state of a disease (ovarian cancer) and is obtained by a blood sample from which a level can be measured.
But it is more accurately considered a “tumor associated protein” because elevated CA 125 levels do not always indicate ovarian cancer and levels can misrepresent a biological state.
For instance, CA 125 can be absent when disease is present, or levels can be high when no disease or no malignant disease exists.
In addition, two patients with the same level can have widely different disease burdens. As you’ll see or have personally experienced, this is certainly the case for ovarian cancer patients. Nevertheless, as a tool, serial changes in CA 125 levels, if elevated, can be fairly representative of disease status and frequently very helpful in the assessment of women with ovarian cancer…
Monitoring changes in the CA 125 value while on treatment can provide some of the earliest clues that your therapy is working. However, it’s important not to over-interpret the values.
For instance, some chemotherapy and biologic agents used in recurrent disease treatment, such as pegylated liposomal doxorubicin (Doxil) and topotecan (Hycamtin), require closer scrutiny as a significant number of patients may have a rise in their CA 125 values — as much as 30% — after their first cycle of chemotherapy, and yet still will go on to respond to these drugs upon continued administration.
Some patients even had a CA 125 rise after their second or even third cycle, and still had a favorable treatment outcome. Similarly, bevacizumab, a targeted biologic agent, may cause elevated CA 125 values despite having a positive treatment effect. So, CA 125 values can and do fluctuate.
Major treatment decisions, such as changing or discontinuing treatment, depend on multiple factors that you and your physician will consider. The trend in your CA 125 values is only one of these factors...
A Final Note We urge women diagnosed with ovarian cancer to try to keep in mind that the CA 125 test is only one indication of how well the treatment is working. Gynecologic oncologists, obstetrician-gynecologists with an additional three to four years of training in the comprehensive treatment of women with gynecologic cancers, are specifically knowledgeable about how to interpret what a CA 125 test result means in the treatment of ovarian cancer. For information on how to find a gynecologic oncologist, and general information about ovarian and other women’s cancers, please visit foundationforwomenscancer.org…”
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Medical-Still trying to paste another part of my ltr 2 U
(My note this Sat. nite – May 21, 2016 - Below is a copy of a letter with multiple references which has been consistently BLOCKED for some unexplainable reason, although the CSN techs have been working on it, or should I say trying to fix the problem. Some days my letters will post immediately. Other days, they are consistently blocked, no matter how many times I try to answer someone. So this letter was first written when you wrote back on May 10th. You may have found out all you need to know by now, but I’ve included web link addresses telling more about the CA-125 count. So I will now try to post this tonight. I’ve written some posts today and they all posted immediately. )
Dear “Medical”
Hello again—we’ve spoken before. http://csn.cancer.org/node/301933
What was your final decision on the PET scan question that you spoke about in the link above? As I understood it, your primary care doctor wanted to have a PET. The oncologist didn’t want to, and said he wanted to wait until after treatments and then do a PET scan. This is such a dramatic rise after only one treatment, it seems that at some point, your mom could have that PET scan to determine the level of cancer activity throughout her body. My oncologist always orders a “Chest, Abdomen & Pelvis” PET/CT w/contrast” scan if he thinks the CT scan isn’t giving him a good indication of what he’s dealing with.
Actually, I’ve had 2 different chemo sessions of Carbo/Taxol. A PET/CT was ordered prior to my first chemo 6 session. There were 6 sessions of Carboplatin/Taxol—each one to be 3 weeks apart. I had a CT in the middle of the cycle to monitor the effectiveness or lack thereof. Then another CT was conducted at the end.
So you’re telling us that your mom has had only one treatment and her CA125 count is increasing dramatically. So I looked around on the web for some explanation of the rise and fall and importance of the CA125 tumor marker for Ovarian Cancer patients. I found a few and they all seemed to say pretty much the same thing. You can find that info below my name. In one article it did say that at first the CA125 count may rise, but by the end of the treatment cycles, the actual CA125 count could be reduced quite a bit. I don’t know if that fits your mom’s problem or not. Now I can only suggest that if Mom never had the PET scan, why not ask the oncologist to schedule a PET/CT scan midway through this series of chemo treatments? It shows “live activity” throughout the body. My oncologist tests midway through for effectiveness of treatments so that he can change the combination and try something else if nothing is working. Being at a loss as to what to tell you, that’s all I can suggest.
Trying to determine the meaning of a rising CA125 level on my own is an exercise in futility. I am monitored once a month. My count was never in the thousands even when my diagnosis had been established as Stage IV Ovarian Cancer. It did drop significantly after my Cytoreductive Surgery (CRS) in July of 2013. Since that time I have had another 6 sessions of Carboplatin/Taxol that ended 09/25/15. In December 2015, the count was down to 8. But in the last 6 months it has risen dramatically. It is now 202 as of 2 weeks ago. Continually scheduling more chemo sessions is not the answer, that I know. Each one takes a little more out of me. My second session didn’t have as much of a dramatic effect as did the first. But I thank God it showed a slight reduction in tumor sizes rather than an increase and no “new ones.” Yes I still have tumors. Even now, some days I just have some unexplained pain for a period of time and then it goes away. And when it happens, I ask the Lord to not let me worry about it constantly. That’s always the battle—fighting the fear factor. The Cytoreductive surgery in my case was never intended to be curative, but rather performed to remove “non-essential” organs to which the cancer could spread. If I had not had that surgery, I would not be alive today.
And while we’re on the subject of CA125 counts—I always have a CA125 blood test the week prior to my visit with him. That way he can monitor the CA125 fluctuation factor. We either agree to “just watch it” or have another CT scan to “see if anything new is happening.” So now I have another CT scan scheduled for June 2nd. Yet “a still small voice inside” says, “Loretta you can waste precious moments of every day between now and then obsessing over the “what-ifs” of a rising CA125, or put it on the back burner of your mind and not let it rob you of the joy of life today.
So I have come to the conclusion that life is too short, and moments too few, to spend my days “worrying about things over which I have NO control.” Look, we’re talking Stage IV here. Life truly is “faster than a weaver’s shuttle.” Once I went inside one of the little historic shops in Williamsburg, VA where a lady dressed in Colonial dress was weaving fabric like they did in olden days. So I’ll put in a plug for history lovers to visit my neighboring town of Williamsburg, VA.
That weaver slung that shuttle across the loom like a pitcher throws a fast ball. And that’s how fast my life is going these days. So how do I want to spend the good days that I have at this moment? With every new day that dawns I have to start all over again. I have two choices—worry over things I can’t control and didn’t do anything to bring it on, or say—“That’s life” and the Lord knows all about it. And when I arrive in Heaven, I would like to tell “Eve” a thing or two. But then again there won’t be any “cat fights” there, so I’ll just have to suck it up and forgive her for starting it all--and enjoy eternity with no more tears, pain, sorrow, suffering and cancer. So when I take the “long look” everything will be okay in the end. So for the “time being”, with God’s help, I hope to “make the best of a bad situation.” Pardon me for rambling on but that comes under the heading of advice as how best to cope in a place we never expected to be.
May God bless you, your Mom & your family as you cope with this cancer. I know you’re doing the best you can to find help and comfort for Mom.
Loretta
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Medical - 3rd portion of my ltr
Here are some places where you can find more information and understanding about the importance of our CA-125 counts.
mayoclinic.org/tests-procedures/ca-125-test/basics/results/prc-20009524
“Tests and Procedures - CA 125 test - Definition - Why it's done - How you prepare - What you can expect - Results
It will tell you why it is done, how to prepare, and what you can expect plus what the results mean. It reads:
“Results of the CA 125 test are measured in units per milliliter (U/mL). The normal value is less than 35 U/mL.
If your CA 125 level is higher than normal, you may have a benign condition, or the test result could mean that you have ovarian, endometrial, peritoneal or fallopian tube cancer. Your doctor may recommend other tests and procedures to determine your diagnosis.
If you've been diagnosed with ovarian, endometrial, peritoneal or fallopian tube cancer, a decreasing CA 125 level often indicates that the cancer is responding to treatment. A rising CA 125 level may indicate a return or continued growth of the cancer…”
Here is a second source:
medicinenet.com/ca_125/page2.htm
“What does an elevated CA 125 level indicate, and how is the CA 125 test used?
It is not possible to interpret the meaning of an abnormally high CA 125 without additional information about the particular patient being evaluated. The reason is that blood levels of this protein can be increased in many different benign and malignant conditions, and an elevated level does not mean that cancer is present. CA 125 is used most often to monitor patients with a known cancer (malignancy) or as one of several tests in the workup of a patient suspected of having a tumor.
The most common use of the test is the monitoring of people with a known cancer that elevates CA 125 level, such as cancer of the ovary. Around 75% to 85% of women with epithelial cancer of the ovary will have an elevated CA 125 level. In the patient who is known to have a malignancy, such as ovarian cancer, the CA 125 level can be monitored periodically.
A decreasing level generally indicates that therapy, including chemotherapy, has been effective, while an increasing level indicates tumor recurrence. Because of normal test variation, small changes are usually not considered significant. A doubling or halving of the previous value would be important.
In the patient who is being evaluated for a pelvic mass, a CA 125 level greater than 65 is associated with malignancy in approximately 90% of cases. However, without a demonstrable mass, the association is much weaker…”
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Medical - Rest simply will not post without security error msg
Hey there - Just can't get the last reference to post. But you've got enough from all of us now.
Loretta
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