Comparatively high CA125

[EchoUK]

Just wondered if anyone else hasn't managed to get their CA125 down to the generally accepted levels?
I had no symptoms until very near to diagnosis of Stage 3 OVCA
then sudden onset of ascites in large quantities which turned out to be malignant.
Diagnised June'06 started chemo July (Carboplatin alone after reaction to Taxol on second application)and had five treatments up until the end of October to remove ascites.Finished fist six chemos in January. Surgery end of January then four more chemo - last one on May 8th.

My CA125 was 6000 to start with and was down to 230 before the last chemo. I have a CT scan on Friday prior to meeting with oncologist mid-July.  
I have been lucky enough to feel really well and normal and have had no pain so far (fingers crossed - don't want to tempt fate)
Does anyone else on the forum continue off chemo with a high CA125?  

[Phlipper]

I am just post surgery. I had a ca-125 of 1300+ in March, 2007. I had 3 rounds of chemo and then surgery in June. Pre-op ca-125 was 8. Weird, huh?

I have to do a whole lot of chemo starting in a couple weeks. Yuk.
I wonder about that ca-125 test. It seems to be all over the place.

[EchoUK]

Hello Katems,

This isn't exactly a place one wishes to welcome anyone but we are all glad to find it - haven't found a UK site quite like it!
I have lived in six different parts of Herefordshire and am now in Shropshire.
Are you being treated in Hereford?

I had to drop Taxol having had a bad reaction as soon as they started the second application of Carbo/Taxol and carried on with Carbo alone - I have had ten rounds - six pre surgery and four after.  I felt so well pre-surgery I felt like telling them not to bother:-)
My oncologist didn't seem too concerned aboout the high CA125 so will have to see what the next meeting brings.

Hope your count goes down and you can have some good time off - keep in touch,

All the best to everyone,

Ruth xxx

PS It is supposed to stop raining at weekend but I wouldn't bet on it!!

[katems]

Hello everyone. I am new here but how glad I am to have found this site. You are all such helpful and supportive ladies.

EchoUk - I read your post with great interest. I also am from the Uk living in Herefordshire. My situation seems very similar to yours. I was diagnosed the beginning of January with stage3/4 ovarian cancer. Main symptoms were nausea and bloating.
First CT scan showed up tumours on both ovaries and uterus and thickening of the omentum plus other bits. CA125 was 7,200. Ascites was drained showing cancerous cells and chemo (carboplatin/taxol) started.
The plan was 3 chemos followed by debulking and 3 more chemos. I had a scan after the first three and again after six. The last scan still showed tumour so the oncologist put me down for 2 more sessions.
The CA125 has gone down steadily but after 5 chemos is still 692 and I doubt it will reach below the magic 35 when this chemo ends! I have a feeling that they might give me a rest and then try another type of chemo to try and get a remission. I go for no 8 on Monday so will ask. I don't think they do maintenance here in UK. It's scary being left without anything isn't it?

Best wishes for your scan and appointment.
Will it ever stop raining?????

[EchoUK]

Just wanted to say thankyou for all the replies.  Just goes to show that no-one has exactly the same pattern of disease or the same treatment or response to treatment.  It is still very much trial and error.
CT scan tomorrow and loads of that horrible liquid to drink first - tonight and in the morning.
It goes right through me - can't wait :-(    The worst part is waiting for the results isn't it?

Hugs to you all from a still wet and cool UK - last summer we roasted!

Ruth xx

[CFK]

I am going through my first recurrence - diagnosed Sept 2005, 3c. My CA125 went down to 22 at end of treatment (Feb 2006) then it was 19 in April 2006 - it was 212 at diagnosis. July 06 it was 65 then 3 months later 62. I felt really well and there were no symptoms to suggest recurrence. My Oncologist said that raised CA125 is not something to get too worried about if there are no other symptoms so it was a matter of 'wait and see'. It was only in Feb this year when level went to 100 that further action was taken. CT scan showed 2 enlarged lymph nodes and I was then put on Caelyx. I had a further scan this week to see how things are going - results next week (keeping my fingers crossed).I am like Helen and don't suffer from any physical symptoms or pain. I don't think maintenance therapy is carried out here (UK - Scotland) and I don't know if that's good or not. I tend to think that if you are given therapy all the time it weakens your system, which I don't think is a good idea if it is being given only because of raised CA125. I am glad that I didn't receive any further treatment straightaway because I felt that my body had more time to recover from the 1st course.
Anyway, these are just my thoughts - I hope things go well for you.
Best wishes, Cath

[EchoUK]

Thanks everyone for your answers and good wishes - hope you all ( and Leslee) are doing well too.

Helen - did you have any maintenance chemo like Simply Star mentioned?
I spoke to my oncologist when I saw him last and he said they don't do it - I don't know whether he meant at that hospital or in this country (UK) and will ask at the next meeting.

Also did you have ascites - this was my only symptom but I had a lot of it - and if you have it did it come back after chemo?

Sorry about all the questions!

Hugs to all from the wet,wet,wet UK!!

Ruth xxx

PS There is a funny big yellow thing in the sky making a lot of light - wonder what it is - expect it will go away soon and the lovely rain come back!!

[Helmar]

Hi Ruth.... good to hear from you, and no.. I've never been on 'maintenance' either. It's just been the straight 6 (but had 7 Taxotere/Carbo this time) treatments, then pretty much on to another. I haven't really had a break from this stuff, and especially in the past 6 months when the CA.125 was so high, we had to do something to get that down, although strange as it seems, I never felt ill, or had any pain with it, even with those numbers being so high. I can't comment on ascites, as I've never had that problem. A friend of mine in Melbourne did, and she told me how terribly uncomfortable it was... she always felt like 9 months pregnant. I still have some swelling in my ankles and wrists from the Taxotere, but my Oncol. said it could take many weeks for that to go completely. I did mention maintenace chemo to my Oncol. at one time, but I didn't really get a reply, as he was so busy trying to think of something at the time, to reduce my numbers, but I will bring this up with him again soon, as hopefully my numbers could be down some more this time, then perhaps a maintenance programme could be useful to keep it at bay for a while. I have blood tests on the 18th. to see how my present chemo is going. The CA.,125 went up by 20 for the first cycle, but sometimes this happens with a new chemo, so it should be interesting to see how it's doing now.
Ruth, don't worry about the questions.. I'm only too happy to be of some help to anyone here, so questions don't bother me.
I hope you are doing well though. This is one lousy position to be in. I can't win the Lotto here, even having the same numbers for 30 years, but I was 'lucky' enough to be the one in 100 women in this country to get ovca. *laugh*..
I saw on our news that you've had floods in parts of the U.K... and we have too. It's been drought conditions here for many months, and now people are being evacuated from their homes because of the floods. Amazing weather world wide, it seems. I hope your Summer is better. We're into Winter now, but it's quite mild where I live... no snow. :-)
Sending you warm Aussie hugs....Helen...

[Helmar]

Hello... My CA.125 was 7500 in December,but as of last week, it was 310. I've been on chemo for just on 3 years now, and manage it quite well. After my operation in Feb'04 and 6 rounds of Tax/Carbo my CA.125 was down to 12. and I was off chemo for about 9 months. The lowest it's been since has been 50. I've been lucky in retaining my good appetite all throughout the chemos.. and like you, I don't have any pain or discomfort, and according to my Oncol. being pain free is a good indication that things aren't too bad.
I wish you all the best, and it seems that we can't gauge too much on the numbers alone.
Hugs to you from Down here...Helen...

[SimplyStar]

looking back on my daughters progress, I wish she would have been put on a maintence chemo after her surgery and first line chemo,  she felt well enough also to follow through,  but it was not ordered, so 2 recurs later  we are still searching for the right drugs.  Her surgery was 1 year ago today,  with your high Ca125, if it were me I would ask about the maintence  at least until your Ca125 comes into normal range. Just my opinion hun, good luck.  Marty

[rmarie]

I would like to help, but I have a normal CA 125 even with my recurrance.  Don't know which is worse