Rapid CA125 Rise

Hi there everyone. I am feeling a little annoyed at the moment and hopefully some nice kind soul on here can set me right ! Today we went to the hospital for Christines three month review since finishing chemotherapy in May. There was Christine, myself and our "kids " there (they are 31 & 34 !). Christine was diagnosed with stage 4 Ovarian/peritoneal Cancer last October and although she found the chemotherapy (taxo/Carbo) draining, at the moment she feels fine - we have been out and about with the Grandkids and felt all was well.

When we got there today she asked how Chris felt and then told us her CA125 had gone up from 24 on her last test in June to 88. We were obviously MOST concerned - but all she told us to do was have two blood tests - each two weeks apart and then come back in six weeks.

She DID ask Chris how she felt - but when she said fine she just said, well if you get any problems, like the tummy swelling, tell us - if not we will see you in six weeks time !! I was a bit gobsmacked to be honest. I thought that much rise in CA125 was disasterous ! - she just said, see you in six weeks. No maybe I am a bit OTT, does CA125 go up and down by that much - or do we have a crisis here ??

Any help from all you buddies would be appreciated.

Love to all as always, Roger.

By lifeisgrand
Posted August 18, 2009 at 8:37 am
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Don't you just hate being blind-sided with news like that? I'm sorry that it came so unexpectedly. I am a bit behind you in this process, just coming to the end of my initial chemo but I am sure others will have more to share from their own experiences. It is my understanding that a "series" of CA-125 showing increases is the way to measure for recurrence and not a "single" lab value. If it were me, I would also be totally freaked out now. That's only natural. But if she is feeling well then try to enjoy the next six weeks the best you can, do your very best to eat well and get as healthy as possible in the event that more chemo is on the way. In the meantime the doctor did say if she has any problems to get in earlier. I have read recently there is often a 5 to 6 month difference between when the CA-125 begins rising to when you actually see evidence of disease on imaging studies and that beginning chemo based on the CA-125 alone did not help improve the prognosis. Will keep Christine in my prayers.

By cdbart
Posted August 18, 2009 at 9:14 am
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Even an infection can cause a change in C A 125 number. A PET scan should any cell hot spots or activity. Did they suggest one? Do your research and then tell the docotors what you and your wife would like to have done. You have to live every day.....you are the one waiting.

By Executive
Posted August 18, 2009 at 9:26 am
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Thanks to you both for replies so far. Yes I have also heard that there is no point in a new chemo regimin just on CA125 - Its just that all this is so very difficult - but guess you know that....................Roger

By momanderson920
Posted August 18, 2009 at 10:02 am
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One thing I have learned in all this is to be assertive. If you and your wife think getting tested sooner would give you peace of mind...don't ask, tell the doctor you want her tested sooner. Is she currently on chemo or off? If she is off, they now are preferring to wait until it reaches higher numbers before going back on chemo. I am in that situation with a most recent CA125 of 222 but unchanged CT scan.

By GEPI
Posted August 18, 2009 at 11:23 am
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Hello,

I am in a similar position with rising CA soon after the chemo ended and though the CT scan appeared clear the pet scan revealed activity. I have recently been in the UK for a 2nd opinion (Royal Marsden) and I have also been told to wait and get re-tested in 6-8 weeks and that normally they need two consecutive CA rises. In my case the rising CA (re-confirmed in UK) and the PET scan as well as closer reading of CT scan leads to a conclusion that there is residual disease which means Platinum refractory/resistant, more chemo etc. I have been also told in the UK that since I feel well I need not start chemo immediately (not too early / not too late) I shall be seeing my doctor here in Greece at the end of the month and shall see what he says. Generally it seems that quality of life is what they aim for.

So be assertive and request more testing if it makes you feel good (I got a PET scan because I had brought it up some months ago), but I am afraid there is no peace of mind with this disease. Try and enjoy your time together.

Good luck
GEPI

By Executive
Posted August 18, 2009 at 12:20 pm
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Hi Gepi - thanks for your reply - You are so right about the lack of peace of mind - that's the worst thing really. We are going to see what the first of the two bloods show and then make a decision how far to "push" for another route.........Roger

By Executive
Posted August 18, 2009 at 12:24 pm
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Hi momanderson - Christine finished chemotherapy in May after six - and then had a scan which was very encouraging. She feels great and that was the problem with the "kick in the teeth" yesterday - so unexpected. We are going to see what the first blood test in a fortnight shows and then decide what to do.
Thanks so much for your reply and concern - and I wish you well with your own readings. Can you tell me, did they suddenley rise over six weeks as Christines or did they take longer. And what level did they get down to. Christines lowest was 18 in April & then 24 (they said that was not really a rise - just a different machine !)......................Roger

By Executive
Posted August 19, 2009 at 5:30 am
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Hi momanderson (love the name tag !!) - Well since starting this I have found out all about how inflammation can affect the readings - and also as you say it is symtoms that really dictate this with scan results etc - so I hope you are feeling good as Christine is and continue to do so........Roger x

By Patricia123
Posted August 19, 2009 at 7:11 am
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The rising Ca, if it is rising and you will know that after the next test, predates the Ca recurring by months. Some ladies say a long time before they see anything on scan.

So the delay won't hurt anything. If you can have a good time waiting and not be so worried it spoils everything, I would wait. But I know that I would be wild and want to start the next chemo so I would call and ask for a pet scan or a ct/pet.

This is tough. No picnic at all for any of us and sometimes I think husbands bear the worst of it.

By sbender3
Posted August 19, 2009 at 1:50 pm
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my ca 125 has bounced around this past year and a half high as 138, low 43, has been high as 128 and down to 72 for the past 9 weeks. had a cat scan today, first one since sept 2008, change shows progression of ov ca, even though ca125 is going down, go figure. doc has told me since the beginning, is just a number. i feel fine, have had to have fluid drained 26 or so times over the past year and a half. i am now going to go on avastin. been on carbo once every 3 weeks, then 4 them 5, then 4, etc. it got fluid back under control, but fluid has never gone away. doc said, avastin can make it go away, plus, the areas of concern are near spleen and liver, not in pelvic region, which is good. lungs fine, etc. so i know how hard it is, but that studip ca125 is just a number. my doc told me he had a ptient with a ca125 of 44, and he had to do surgery, and found it in her lungs. stage 4. going by how you feel, and what he feels during an exam, and cat scans, etc, if all we got. god is in control...god bless, sherry

By JanP
Posted August 19, 2009 at 5:26 pm
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Hi Roger'
I repleid to this post much earlier but see now I must have pressed the wrong button.Sorry.

I said I had sent you a long reply on Cancer Buddies Network.

Iwaited more than 12 months as my CA doubled up from 20 to first 97 and then continued to double to about 880 before any thing showed on Scan.

If possible keep enjoying life while Chris still feels well.

And go to Royal marsden for 2nd opinion.

JanP

By llj
Posted August 19, 2009 at 6:46 pm
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Hi,
My chemo ended Oct. 4 2008. May 2009 my CA-125 started to rise. It doubled from 12 to 27, then in one month went up to 34 in July. We watched because maybe it was stress that caused it to double (can do that along with infections and inflammation). But, by the time school was over and I had no more stress, it was still climbing. In August it was 45. But the definitive thing for me was that the PET scan showed activity.
My doctor had me see his teacher/mentor, who is at Moffitt Cancer Center, for a second opinion in August. I won't see my own doctor until Sept. 9. Meanwhile I am on Tamoxifen. I figure if my doctor isn't dragging me in over night, then I am not going to worry.

I think a key thing in your wife's case is that she said she feels fine. Same here; I felt fine. I wasn't symptomatic, so there was no rush to start treatment. He only ordered the PET scan when I complained about a pain where my ovary used to be.

I still feel pretty decent, and I've read there's no rush to start tx as soon as the CA-125 starts to climb.

My friend has ovca on her pelvic floor and without chemo, her CA-125 has gone as high as 300, I think, and then back down to 170+, and back up now to 200. Because she is feeling good and the cancer is just "sitting" there, she's not going after any chemo. Just maintaining an alkaline diet and focusing on eliminating stress.

Hopefully, your wife's CA-125 will go back down. I understand it is not unusual for it to fluctuate.

Lynda

By Executive
Posted August 19, 2009 at 7:28 pm
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HI EVERYONE ON HERE - YOU ARE ALL SO VERY HELPFUL TO US BOTH - YOUR REPLIES ARE TRULY UPLIFTING AND SHOW HOW TOGETHER WE ALL ARE BY TALKING TO EACH OTHER.
WE TRULY APPRECIATE EVERY REPLY AND THEY REALLY HELP TO LIFT THIS DARK CLOUD.
GOD BLESS YOU ALL ....Roger & Christine xx

By FavoriteAunt
Posted August 20, 2009 at 8:56 am
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If the CA125 has been an accurate marker, it usually does not go up and down by that much without a reason. I share your concern. When it starts doubling it needs to be monitored closely. They really should do a CT scan in the meantime to see if anything shows up. I can see doing one more blood test, but doing 2 and then waiting for 6 weeks beyond that seems like a long time. I'd push for a scan and see what that shows.

Hope you get some good answers. All the best to both of you.

By Executive
Posted August 21, 2009 at 7:39 am
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Hi Favourite Aunt - Thanks for your thoughts - Now the interesting thing is that Chris has also had a dull ache in her pelvic region that came on over the last few days - so we went to the doctors this morning and he checked her over and said she has an infection behind the bladder which has caused inflammation. Now although I agree that the CA125 needs to be checked further, I have spoken with two medical helplines for Ovarian cancer (McMillian & Ovacome) - Strangely BOTH said that inflammation can cause a distorted CA125 reading of over 100 points. I said to the doctor this morning that if it has not cleared up in a week we would want a scan and he agreed - and also that ties in with the date of the first bloodtest which we have booked for Tuesday week ( we have a bank holiday in the U.K. on the Monday). So we have two lines of attack - and then we will also have two results to compare. I totally agree with you about not leaving it the full six weeks - and I will be "on the ball" once the antibiotics course is finished. Glad to say Christines feels absoluitely fine as well which must be good. Thanks so much for your thoughts (and that goes for all who are replying to me) - you are all great - thanks.

Guess O.C.N. A for you must stand for: Only Contains Nice Aunties !! ...Roger x

By Seooy
Posted August 23, 2009 at 2:15 pm
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Following my initial treatment, my ca 125 was 27 (within normal range), but six weeks later it was 48, nothing on a CT scan. By late june the 125 was a little higher so i had a pet scan; showed no "hot spots". By august my 125 was 128 and a late august ct scan showed new cancer. Began treatment after the ct scan showing the cancer. As I understand it, studies have shown that chemo need not start just due to ca125 rise but when actual cancer is seen on a scan. So, please make sure she gets a scan sooner rather than later.
I felt fine too as the cancer returned. I've never really had symptoms the cancer was discovered when i had a cyst removed.

By Executive
Posted August 24, 2009 at 3:33 pm
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Hi Seooy - Thank you so much for taking the trouble to reply here. Well that seems to tie in with a lot of views - and I guess the oncologist is about right. The next blood test is this Monday and then a fortnight later - Then we go back to the hospital for both results. The Oncologist - Jill - has indeed said that she would them suggest a scan if the results still show the CA125 on the up. She has also just written to us (with a copy to our local doctor) saying the same thing. I think that will be the main decider as you say - to look at the scan results. Chris DID have a "funny feeling" as I wrote in my post on here as a reply to Favourite Aunt - and the doctor said she had a lot of inflammation - which I know can also affect the CA125 results. Christine continues to feel fine - we were away in our motorhome (RV) at the weekend with the Grandkids and tomorrow we are off to a steam railway for the day - so I guess we shall just see what the tests reaveal. All the best with you own treatment (what are they giving you second time around ? - always useful to know what our Hospital is likely to suggest - and how is you CA125 now - and your general wellbeing ? All regards.................Roger x

By Seooy
Posted August 24, 2009 at 4:40 pm
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Hi Executive, I feel well and having treatment now almost a year. I get tired and that is about it; i am lucky to have few symptoms and I tollerate chemo well. I am currently on topotecan (brand name hycamtin).

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