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Here I just celebrated my 1 yr remission and now my CA125 is slowly rising. Hope I didn't celebrate it too quickly. For those of you who have had a recurrence, how big of a jump in your numbers did you have in the beginning? My numbers are low, but a rise nonetheless. Beginning of April-11, end of April-14, now 17. I know those of you with huge numbers could probably slap me upside the head. Let the worrying begin......I'm "skeered."
Cancer Surgery Irritable bowel syndrome Avastin Breast cancer Anxiety Primary peritoneal carcinoma Pain Depression Stress
It all depends on what YOUR CA125 is like. Some ladies can be in the normal range and still be experiencing a recurrence. Your Oncologist and you have to find out how YOUR number range for you! Mine run low, even with recurrences. A low, noral area CA125 does not mean anything for me. What we watch for is the continual rise. Be smart, and do not compare your numbers to other ladies. Just because someone is in the normal range with their CA125, it does not mean a recurrence is NOT going on. We can get ideas on how other ladies do in this area.....but that does not mean it is the same for each of us. I am praying for wisdom for you oncologist, if you are in a recurrence.....I pray they do what is neccessary to intervene. God Bless and ((HUGS))
My mom's CA-125 double in one month from 4,500 to 9,982.
I hate to be the nay sayer but though your levels are low, they are an indication that "something" is going on. My mom's original CA 125 was 125. After surgery and chemo it was 9. Its stayed below the 35 mark for 3 years and then slowly started to climb. If you CA125 starts to move slowly up for two tests in a row, it is not a lab anomally. DON'T PANIC BUT, get your doctor to run other tests. Get scans, get xrays, get a SECOND OPINION. We made the mistake of riding it out and a year later my mom was on chemo again. She has tried 10-12 different agents over the last 5 years and has been told no more chemo. She is going to die unless we get a miracle. And ladies, my mom is not accepting of death, she is kicking and screaming which is the ONLY reason why I think she is still here right now. She will not give up at the young age of 63. I am trying to get her in a PARP Study. But clinical trials are a maze if you doctor does not help.
I hate to be all doom and gloom but please take a breath, dont panic, but pursue all options when your CA125 starts to rise. Better to be safe than sorry.
Yes, I am laughing but I also understand your concern.
I wish I would have been more concerned when my
number were rising but I Onc told me not to worry.
I have a new Onc. now.
Mine rose to 78 than to 139, 178, 434, 1120, until he
finally said the C is back. I think 17 is still concidered
normal (up to 35). Are you supporting your body with
some alternative (supplements)? Now is the time to
do the research and help your body. I wish my Onc.
would have told me the C is back when it reached
434 I would have started the alternative than, by the
time it got to 1120, I went on Poly MVA, felt really good
on it but the markers were rising to 1680 (this is due
to the die-off of the cancer cells caused by the Poly MVA) which I did not know. Had I started the PMVA
when the count was 434, I am sure now the die-off
spike would have been minimal and by November,
when I started the new round of chemo, the count
would have been down to normal.
Please support your body now that you are still in
charge. A good book to read is Bill Henderson's
CANCER FREE. He lists a lot of Protocols that really
work. Sure if you wait like I did and the markers go
up that high, first your will start to feel ill and worried
and any alternative will not work fast enough for you
to stick with it. But with only 17 your are in total
control.
Best of luck and success.
Vaya-condios.
STOP WORRYING. Mine went from 60 to 69 to 258 to 465
mine went from 12 to 34 (doubling :-( In May,
34 to 37 in July (in my opinion not a bad jump even if out of the "normal" range)
and I go back August 14 for another check and a test for the BRCA 1 & BRCA 2 gene August 3.
If it spikes again, I will have a scan and then be put on tx again.
Hi ladies,
My only comment is that we can't let the numbers panic us. It's so obvious that with some of us it's very relevant and with others, it isn't. When I hear of numbers in the thousands, it blows my mind because I was stage IIIC with 75. When I was in remission, it remained under 10. However, back in January, it doubled to 22 so I was sure it had returned by my CT scan was clear. We believe it was due to a viral infection I couldn't shake. Unfortunately, now I had a rise into the 50's but my doctor wasn't extremely considered because I'm suffering with severe irritable bowel syndrome due to the fact that one of my daughters (33) has breast cancer, just finished chemo and is having surgery on the 23rd. Another CT was done and they saw two small "things", not necessarily classifying them as a recurrence but I'm back on a combination treatment of Avastin and cytoxin just in case. I had been on Avastin alone for about a year after a year of the combination. Basically, I've been on Avastin since June '07. In any case to end what I intended to be a short response, don't panic about your numbers because so many other things can cause a rise but contine to be vigilent with your followup. All easy to say but very hard to do sometimes. I too have my really scary, pity party days. Good luck to all and God bless.
Linda
OMG! that sounds like my story. I have had 2 liver lesions 1cm each for 2 years now, stayed the same and the doctors always ignored them until now. I am getting more ultra sounds. how did they find these lesions, how long have they been there, how big are they? and how do they know that they are cancer?
Well, my doc wanted to check out my rising CA 125 numbers so I had a CT scan last week and finally got the results yesterday. No change from the previous scan which was June 2008 and showed no disease. They will continue to test the CA 125 monthly. The concern is the fact that my scores doubled in a month. So...for now a little peace until next month when the anxiety starts again. I'm trying to get a handle on the worry. Friends tell me just to stop worrying but they don't know what it's like. In any case, I slept well last night. Janet
Hi- I had a recurrence 4 months after completing my initial 6 taxol/carboplatin treatments following surgery. My CA125 only went down to 35 and stayed there for a few months. Then in one month it shot up to 195 and a week later it was 289. The CAT scan revealed only a small amount of visible disease in the peritoneal cavity near the original tumor site. I started on Doxil and am looking at treatment #4 in two days. They won't check the CA125 or do a CAT scan until August since the Doxil is such a slow release drug. Talk about being in limbo. Worse than that I have been having pain in my lower left abdomen and my rectum. Not enough to put me out of commission but just enough to say,"Hello! I'm here!".
My CA125 never went below 22 (after 3rd chemo). It gradually went up to 35 and then doubled to 74. At that point, my Dr became concerned and I had a PET scan. It was negative and then my CA125 came down to 45. It is now 29 (7 months post chemo).
My Dr says with cancer, it will never go up and then down! Three things can cause it to go up: Infection, Inflamation, and cancer.
Hang tight! But keep an eye on it and let your Dr know how you feel!
Teal hugs!
northernhope, so yours went from 18 to 67 in a month?
for me the CA125 going up was a factor showing recurrance of cancer. Mine went from 18 to 30 then 32 then 47 then it was 67 right before surgery the end of May. This all took a little over a month to take place. I did have all the other signs to when my numbers went over 35. I am lucky that none of my drs waited to long to schedule surgery and chemo. My CA125 was only 67 before surgery. My recurrance was right at 6 months for my last chemo. This really bumbed me out. I was just getting used to having hair and getting stronger and feeling normal again. But i survied the first round and am staying postive about this secound round. I was under a great amount of stress before my recurrance and feel this may have played a part in the cancer coming back. I hope the best for you. Please keep a close watch on every thing your body is telling you.
Paintergal,
One bit of information that might lessen one worry. Most of the time, the chemos that are used fro a recurrence do not cause hair loss. I took Doxil, and it caused none. I am now on Topotecan. It has caused a little thinning, but not enough that anyone but me notices it. Some of the chemos are less frequent than the first line ones, also. For instance, the Doxil was only once every 28 days, so job would be pretty doable.
Sending some good thoughts your way. I know the waiting is hard.
Nanamom, I hope your scans reveal good news.
The not knowing is tough. At least when you know, you can start doing something.
BTW, the night time waking is a classic symptom of depression. I would say to not hesitate to talk to your doctor about an antidepressant if it continues. I would be a mess without mine. I still feel legitimate sadness, but at least I am sleeping through the night and not crying at every sappy commercial on TV.
(I'm the first reply up top.) The good news is that my doctor's investigating things right away. I'm having ab, chest and pelvis CTs in about two hours. Very scary to be back at this again after doing great for a year. I do have some low pelvic pain now, too. The worst for me is that I'm waking up every night and can't get back to sleep for hours. I think it's harder not knowing than finally dealing with it. I keep trying to think positively - it might be nothing but even if it is something at least we're getting right at it.
my appt is on the 14th of July,but Im dreading it already. I just had my blood drawn for a ca125 and im concerned. Its been rising gradually from 31 to 46 to 56, and now im having pain in my right hip. Im trying not to jump to conclusions because, I do run and I hope that maybe I just overdid the running. I hope I dont need to go back on chemo. I was getting used to having hair,eyebrows and eyelashes again, and Im presently looking for a better job.
I have recently found out that many times the number will jump depending on what lab the test gets sent to. You can't compare numbers from different labs. When my first recurrance was diagnosed my ca125 was only 20 but that was at Sloan, I am treated locally and they use a different lab and the number was around 40. It is so easy for the doctors to say...it's still within the margin of error, don't worry. However, I worry anyway. Keep an eye on it and try not to "dread" the next test. If it goes up more you should insist on getting a pet scan to see if there is any activity. The sooner you catch something the better and the more informed you are the better you can fight. I guess my advice is stay informed, but don't let worry consume you, you need all your strength to fight.
Mine started rising slowly at about 12 months from 5 to 7 to 9 to 11 and then it doubled from 14 to 28 or 29 and doctor ordered CT scan showed "shadow". MRI 3 weeks later showed some "masses" on my liver. CA 125 was 52 at that time. Started gemzar, carbo and avastin (placebo?) trial and it is down to 5 and CT scan showed all clear after 3 treatments. Just finished 4th and have 2 to go.
I hope your's is not recurrence but if it turns out to be - there are a lot of treatments out there!
Good Luck!
JoAnne
Ladies,
It would help if we knew the standard error of measurement for the CA125 (or maybe it wouldn't).
For example, one of the cognitive tests we use in education has a SEM (standard error measurement) of 3. That means the same child might score a 127, a 130 and a 124 on the same test. I do know when I went from 16 to 18 my oncologist told me if they ran the exact same sample through, they could come up with those numbers. Another thing to look at is whether the same lab is running the test. Slight variations in testing could result in slightly different scores. Also, there are two scales of measurement, although I don't know what they are.
I'd think if the same doctor is administering the test, you might get the SEM, but wouldn't have two different scales used. I'd ask, though.
Finally, I'm betting the yeast infection is playing with the scores.
Hang in there. Let us know what happens. We're praying.
Blessings.
This black cloud that hangs over our heads is horrible to live with. When I have tried to explain it to my family, they just don't get it at all. Thank God we have each other to talk about it too...it is such a relief to know that there are people out there that can relate to our anxieties. Ultimately I have the most faith in the physical tests like CT, MRI, and PET that give a window into what is going on inside. I continue to see ladies post that they did have CA125s that jumped around and it was not cancer so that is a bit of hopeful information. Hang in there, Shonna. I know the fear with this thing is paralyzing at times. CindyXXXOOO
Don't panic yet - you're still in the normal range. If it keeps going up in quantum leaps, then you have trouble and your doctor will order a scan. The only number range that matters (average or very high) is your own because it's unique to your body, so don't compare to others.
My CA125 has always been very accurate for me. For my first recurrence - which came after a 6 year remission and with NO pain at all - I went from 11 to 40 at my 6 month checkup (given my long remission I had started 6 month checkups). It quickly went to 59 and 107. if I hadn't been checked and just waited for pain to show up, who knows what state I would have been in?
For my second recurrence (which happened 10 months after remission from that first one) I went from 5 to 15 with 3 months. Yes, that is normal, but I know my body, and I was afraid it would keep going. Sure enough, it did. I started having pain and 3 months later it was 84 and then 116.
I just finished 8 rounds of Doxil. My reading after 4 treatments was 12 (very good); after 5 treatments it was 13. Still good, but I started to wonder even though it was just one point. Sure enough, after 7 chemos it was 47. So no remission, and now I start a new chemo in about week.
You have to go by your own body. My reading has been accurate for 8 1/2 years, so I'm lucky. I get scans when my doctor is suspicious and to confirm elevated CA125's, and to monitor treatment progress. He does not do them for routine checkups when I'm in remission and is careful about the amount of radiation I am exposed to. My doctor is wonderful - careful, very responsive, aware of everything about my condition and listens to what I tell him. Can't ask for more than that.
So, try to take it slow and see how things go. Yes, there is always a chance for recurrence, but try really hard not to live your life in fear of it. Do I worry - yes I do - but over the years I've learned to try to balance the fear with living a "normal" life. I know you can do it. I've read your other posts and you are a strong lady. I'm hoping the levels stay good and your remission lasts much longer. All the best.
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