Long time in remission and getting scarier. Anyone with experience of slow increasing CA125's?
my oncologist wasn't worried about my CA125 climbing slowly, which it was while I was still having the last of my first round of chemo. Just said that the chemo was not as effective. He's more concerned now that the numbers are jumping up in higher numbers. I am due to have a CT scan to see what's going in inside before we look at starting my next chemo.
Small increases don't worry them so much. And CA125 can vary for a number of reasons, not just because of the cancer, so try not to worry just yet :)
Sad to say my mothers CA125 went up. The doctot did not really see the point to doing the catscan. He just told her that this cancer is a pain in the butt and every now and again you have to give it a hard knock in the butt. She can't go back on carbo/taxol which worked amazing because she had bad reaction during the infusion which landed her in the er. So now we try doxil.
I think it's a good thing they can track the cancer to some extent. But i really wish this cancer would let you have a longer remission. Mom did about 9 months. Guess that follows all the statistics.
mine went from 11 to 18 to 30 to 40 then we did scans and it came back.
that all took place within about 8 weeks.
they usually say if it starts to double or triple it can be concerning but
obviously it can also mean nothing.
My CA125 jumps about! It was 1800 at diagnosis but went down to 31 after completing chemo.
Over the past six months it has gone from 31 to 9 to 30 to 8. Clearly it wants to fluctuate between these numbers as there appears to be a pattern emerging but I didn't know it could! Not sure if that's just me and would certainly like to hear if anyone else's does this but it is a slow rise and decrease, with no ongoing treatment.
May I ask how long you've been in remission and what is it you fear? I've heard that re-occurance can happen in the first two years after treatment but I see so many positive survivors here I find that hard to believe. In fact I know other cancer survivors ( not peritoneal) overcoming or certainly managing the disease admirably.
Personally, I do fear re-occurance as strangely, I feel the second time would be more of a "shock"...I guess I would know what's coming!
Still, I try to remain positive,
Hi! This is my first post although I've been following it for several months. I also have had my numbers bounce around. The first time in 2009 I went from CA 125 marker of 382 to after debulking down to 80. After first chemo treatment down to 40 and next one to 12 and then 5. Stayed there for 13 months and it went from 4.9 to 12 and then 16 overnight. Two weeks later hit 40 and started 6 rounds of carbo/taxol again. Immediately dropped to 6.3 until week after last treatment when it jumped to 12.6 The following week it went back down to 6.3 without anymore treatments. Doc said I'm good to go until my CT scan in January and we'll see. Please don't worry but keep your check ups. My CT's this last time didn't show anything.
I know it's scary and I too would like to hear from those who have made the 5 year mark. If you're out there we'd love to hear from you. I go on with my life, but panic everytime they check the CA markers.
Hello and thank you so much for the reply...
It's encouraging to see your numbers going all over the place...if you get my meaning of course! That's the thing with this forum; it does give us the opportunity to converse and compare with others that are going through the same. For me, that brings much comfort...
Thank you for your interesting comments and thoughts,
I have a friend who is 4 years in remission and has never had a re-occurance. So it is possible. Your numbers are amazing :) My numbers have always been very high and I am really lucky if they go into double figures.
I would like to know what chemo she was on and what stage is she?
Well, that's encouraging that someone is staying in remisson for 4 years, yes! I went to have my CT and blood work-up last week and came home a litte discouraged as my numbers took a leap from 6.1 in November to 13.4 Back for another test in 3 weeks. My CT did not show anything again, which I'm thrilled to know, but I do honestly worry about my numbers going up. Doc likes to start chemo immediately if it hits over 35. Hopefully, something else managable is driving the numbers and they come back down.
I'm sorry your numbers stay so high. Are you in active chemo treatment now? Last time my numbers when up was due to infection from a urinary track issue. Are you fighting infection in your system somewhere?
Best of luck to you and I'll keep you in my prayers.
Hi , is it true that a track infection can cause abnormal CA 125 levels? like in the 200's??
I had been in remission for 6 months with CA levels less than 10. 1.5 months ago it was around 8 and now it has spiked up to 250
I have no other symptoms my scans seem to be ok , i don't even feel like having cancer! still my CA levels are high. I just hope its some sort of infection cause I do feel a bit uncomfortable only when I have to urinate apart from that all's well .
My CT is due next week hoping for the best.
Hi Tina I live in Australia and ave been searching for positive outcomes for my husband I came across your posts so I registered straight away. My beautiful husband had part of his bowel removed last year they found the tumour by accident he had chemo this year his number went down to 3.4 it was 55. Its now at 12. My husband had a blockage in his bowel and while he was opened they found a few spots so chemo will begin again on Friday. They cant operate or he cant have radiation Im absolutely beside my self I find it hard to eat or sleep. My husband sleeps alot, has acid build up and vomits alot he has lost 15 kgs in the last 2 months is there any info u can give me what will help him as soon as i read ur posts I was encouraged
Scared and frightened
I am sorry to read about what your husband has been going through. The good news is that his numbers are so very low :) The chemo will certainly do its job with the few spots that they found on his bowel so don't worry about that.
I could never never have surgery or radiation, but the chemo I have been on is powerful stuff and knocks the cancer cells out.
Sleep is good as his body is under attack from the cancer at the moment, so he needs as much rest as he can get. As for the acid - that is probably due to stress or nerves as he may be worrying about things. I had this too along with heartburn. My doctor prescribed some really good tablets called Lanzoprazole (in the UK) The vomitting may be something that has happened because of the bowel blockage. I had a partial blockage back in May. It caused inflammation throughout my small intestines which made me vomit too.
Surgery on the bowel seems to take ages to recover from so try not to worry as it sounds like his body is still recovering from this surgery. It took me a long time for my bowel to get back to normal after my "partial blockage" - I think it may have been about 8 - 10 weeks.
Let me know how he gets on, Tina xxxx
I’m brand-new to this discussion, but I am so eager to learn more from other patients. I appreciate hearing about your experiences. My oncologist told me this wk that my CA 125 is down again, to 803 from 1015 2 wks ago, 1655 a month ago, 2397 6 wks ago & 2738 at its peak upon my diagnosis of PPC in July. I was so alarmed when I heard the original number, but he has told me that it’s more important to see the CA 125 values decrease over time with chemotherapy than to worry about the original value. I’m gratified to see the numbers going down, & I hope for good news for others.
As most of us know the CA125 is not a very accurate test. It can be affected by infection or surgery or even lab technique. It is however, the about the only test I can use to monitor my cancer as CT's and PET scans are not accurate for me either. The highest I have ever been has been about 150. After my first round of chemo, I had a 9 month remission. Every month the CA125 went up about 1 point a month. At about 9 months it started to double and increase much faster. Most people dont have to worry about small increases. It could be anything and mean nothing. With that said, I must admit I am very vigilant with every little point that goes up. I have been told I am fine when I wasnt and it makes me nervous. I do have physical symptoms such as sever constipation, abdominal pain, and loss of weight and I know I have a problem. We just monitor my symptoms and ca125.
@Best Friend. I dont remember if I told you but I too had an anaphylactic reaction to Carbo and I am given it in the hospital with pre-meds and given over 19 hours and have had no problems and my Ca125 is down to 17 after 2 doses this time. I have now had it 4 times this way and plan on 3 more. The doctors told me it could almost always be given that way. ASk your doctors about it.
My wife was diagnosed with stage 1 Ovarian cancer in 2007. We were trying to have kids and were very lucky that they found it so early. She had a full hysterectomy and chemo. She has been a champion through it all. After chemo was over her CA125s have always been around 6 or 7 and have NEVER increased. We were ready to celebrate as she was going in for her 5 year tests and scans. Her CA 125 jumped to a 10.5. We just found out about an hour ago. This was very scary to hear after 5 years of no increases. They did say that the CT scans did not revele anything to be concerned about but we are still nervous about this increase. Has anybody else had this happen and what did you do? Her doctors in Tennessee were AWESOME! We moved to Oklahoma 2 years ago and her doctor here is overworked and simply does not give the care or communicate like her doctor in TN so we are nervous that she is not getting good care. He is the only GO on her insurance plan so we are stuck with him.
I have been in remission since August 2012. My CA 125 test were 1200 when I was diagnoised. I had 9 rounds of chemo and they wanted them to be 35 while I was getting the last 3 treatments. then my scan in August came back clear. My CA 125 test was 47. I went to have the test done again the last of November plus a CT scan and they were 68 but the scan was still clear at least what is visible to the eye. I just went again for another CA 125 in Jan. and they had gone up to 116. The dr. wanted me to have another CT scan which once again was clear. He doesn't know why they are up and is keeping a close eye on me. It definitely worries me and I can understand you being concerned about it for I am concerned about mine climbing and they are not knowing why. I hope this helps.