high ca-125

[alanpvegas]

Just saw mom's ca-125 online, it's in the 6000's from only 700 about a month ago :( :( :(   Anyone had it this high and had it go down?

[aj3]

Has anyone in remission had ca 125 gone up and then go back down so as not sign of reoccurence.  Mine went from 9 after chemo to 15.9 three months later. My Dr. had me switch to monthly tests - 15.2 andnd now 23.1.  Has anyone had this can of increase but then had it go down?  Also my Dr. assures me that under 35 is normal but on internet I read that for postmenopausal (which I am after surgery) normal is 6 to 15.


Thanks

[Helmar]

Sorry about the 'double dip' here... silly computer, or maybe chemo brained operator. :-)

[Helmar]

G'day Alan...Personally, if my Oncol. 'stuffed around' with me, as your Mum's seems to be doing, he would no longer be 'working for me'... and that's what they are being paid to do... work in getting the best possible treatment for the patient. I feel that your Mum has been 'short-changed' in her treatments, as to me, a trial is something that one goes for, when all other avenues have been exhausted, and as far as I can glean from what you've said... there are still other options for your Mum without going on a trial. As I've said on this Forum before, I'm not much for oral treatments, but they probably work o.k. for some, but when the CA.125 is going up, we don't really have time to try these things for too long. I've had single agents before too, but I'm always more comfortable having two going together... and this time, it's 3. :-)
I think a change is as good as a holiday, and if your Mum can change to another Oncol. with some maybe, fresh ideas, it could be just what's needed. I do think too Alan that there are probably some who think that because we have Ovarian cancer, we are on the way out anyhow, so they don't bother so much, but my Oncol. has always been in there, fighting for me, as he knows better. *laugh*... I think that's what we all need... someone who is going to do the best they can for us.
Let's know how it goes with your Mum's appointments.... Hugs...Helen...

[Helmar]

G'day Alan...Personally, if my Oncol. 'stuffed around' with me, as your Mum's seems to be doing, he would no longer be 'working for me'... and that's what they are being paid to do... work in getting the best possible treatment for the patient. I feel that your Mum has been 'short-changed' in her treatments, as to me, a trial is something that one goes for, when all other avenues have been exhausted, and as far as I can glean from what you've said... there are still other options for your Mum without going on a trial. As I've said on this Forum before, I'm not much for oral treatments, but they probably work o.k. for some, but when the CA.125 is going up, we don't really have time to try these things for too long. I've had single agents before too, but I'm always more comfortable having two going together... and this time, it's 3. :-)
I think a change is as good as a holiday, and if your Mum can change to another Oncol. with some maybe, fresh ideas, it could be just what's needed. I do think too Alan that there are probably some who think that because we have Ovarian cancer, we are on the way out anyhow, so they don't bother so much, but my Oncol. has always been in there, fighting for me, as he knows better. *laugh*... I think that's what we all need... someone who is going to do the best they can for us.
Let's know how it goes with your Mum's appointments.... Hugs...Helen...

[Helmar]

G'day again Alan...it seems your Mum has a lot to deal with at the moment, and I'm very sorry to hear that, as this disease alone is enough, without the extra issues to confront as well. I hope it works out well for her, and she doesn't have damage to her liver. I think it must be really tough on those ladies who are not able to eat/drink properly because of the nausea. I've not had any nausea with the chemos, so I think that has helped me tremendously too. With the chemos... I had Gemzar which was terrible on my blood, and didn't work that well, so my Oncol. put me on Topotecan... only two cycles, as he had this plan, and told me that he would give me just enough Topotecan to get the cancer cells to split, and then he gave me Taxotere/Carboplatin...7 cycles of that. That really did the job Alan, as with the Topotecan, my numbers jumped by the 100s and soon went to 7500. It was a bit scarey for me, but my Oncol. didn't seem too concerned. With the Taxotere/Carbo the numbers came down very rapidly, and worked really well for me. I've had two cycles of CMF... and after the first one my CA.125 went up by 20 and is now 310, which is very managable to me. I have my next blood test on 17th. and get results when I see my Oncol. on 18th. so hopefully the numbers will be down this time, but I'll let you know. Can your Mum take the Taxotere/Carbo? I find it's o.k. to take, with the only real side affect for me was extreme tiredness, but well worth it, to see those numbers coming down. I can only hope and pray that your Mum can get back on track, and start to feel much better. She's had a terrible time with it, hasn't she?I'm looking forward to hearing some good news soon from you re your Mum Alan. Hugs to you both...Helen...

[alanpvegas]

Thanks Helen!  I want to bring different options to this oncologist (of which we have to wait until next week to see of course).  If they are no good, she's going to drop this HMO insurance while she can and go back to original medicare with a medigap policy so she can see anyone.

I just can't believe the prior oncologist (after having her only on carboplatinum, then a clinicial trial, then one month of hexalen and then without even looking at ca-125) basically gave up on her.  Quite a contrast from hearing everyone on this board who's oncologists work to find the right combination!

[alanpvegas]

Thank you everyone for your replies!

Helen, I think her bowels are still an issue especially with the pain, we are going for an ultrasound on Thursday to investigate further.  And if that wasn't enough, the doctor found some elevated levels in her bloodwork to say that she may have some liver damage (from the chemo?), so we're waiting on that to see if it was a one time thing or what may be causing it....I still think the Hexalen oral chemo did a number on her.

We're off for the bone scan tomorrow, that sounds like a long ordeal but it's good to know where we stand on that one.

It gives me/us hope to know that even with such high numbers, we can get it down!  I know you are right about the ca-125 numbers, but it's always a shock to see it so high after being in the hundreds just a month prior.  What chemos did they give you that seemed to work?

[Helmar]

G'day Alan... Yes... my CA,.125 was 7500 in December last year....but it's now 310 as of last month. I'm due for another blood test next week so it could/should be down some more I hope. My Oncol. has stressed to me many times, not to take so much notice of the figures, but gauge more on  how I feel, and if in any pain or discomfort. Even with the 7500 I never had any pain or discomfort, was still feeling fine, eating well, and still active, so the numbers are only just that in many cases. How is your Mum doing...apart from the obvious high numbers? Is she feeling o.k.. not in any pain... still eating well. I think these are the important issues.
Wishing your Mum all the best...hugs to you and your Mum, Alan.....Helen...

[nyc lady]

Sorry to hear that your Mom's CA125 is going up instead of down.  I do not think that the actual number is indicative of the extent of the disease.  There are many women in Stage 4 that have CA125s close to the "normal" range.  

The thing is to find the meds that are going to send the numbers in the other direction.

My thoughts are with you,
Pam

[Steve H]

hi, its sounds high but the same thimg happened to my wife Vi, shot from 125 to 4500, tried yet another single agent, now hovering around 600. her dr want to use single agents first then go onto combos> so far all ok