The CA 125 is a good tool, and once again it has proved that the body can tell you it is not well. My suspicions have been confirmed and my count is up to 226 , so CT scan booked for 2 weeks time, and then off to see what is happening and what he can give me... suggesting an oral drug, 10 days every 3 weeks. anyone had it? Here's hoping we can catch it before it blows me up with fluid this year!
We had a good weekend away despite the rain, and seeing all the queen scouts from round the world at their parade was an eye opener. Here's hoping I can get some more experiences done......
Well we hoped you were wrong, but as you say, you know your own body. Good to hear that you are well enough to get out and about though. The oral drug I know of is Etoposide. Could it be that?
Sorry you were right, but we know our bodies so well when we live with this **##* disease. Hope all goes well with the new treatment and that you are able to continue enjoying some treats. Thinking of you and sending a big hug ((((XXXX))))
Yes I agree the ca125 can be a very good marker.I'm on my 4th round of chemo and my ca125 is always up when I don't feel right. Not had any oral chemo as yet so can't help there I'm afraid. Hope your treatment goes well, glad you are still out and about.
Sorry for your news, but you sound as if you were prepared for the news, the same with me I expected a recurrence as well, just started new chemo but didn't ask if onc if he hopes to get me into remission or not ! I feel well, glad you do to, this b****y thing messes with your brain. hope all goes well. Love Sue x
I am on my 5th cycle of oral eptoposide,as a 2nd line treatment.I take it twice a day for 10 days & then have a break for 11. Prior to this I had 6 weekly infusions of cisplatin.
I had been warned prior to taking it that it can be pretty severe but I am luckily tolerating the eptoposide well, just a bit of tirdness & my hair has fallen out again,no nausea or any other real side effects of note. I am managing to work part time.
My oncologist told me last week that if I continue to tolerate it so well ,the plan will be for 9 cycles in total,which apparently is the max you can have.
My lastest scan has shown that the two lesions in my liver have disappeared & the disease in my lymph nodes is decreasing in size.
My ca125 is down to 24.
Best of luck with it,I hope you tolerate it as well.
Helen
X
Hello
Sorry to hear you've got this news but hope your treatment goes well.
What a b****r! Still, as you say, you were expecting it! Good luck withbthe oral chemo! I hope it works and the plus side must be the ability to administer it yourself! No drips, tubes, sitting still, hospital wards etc!
I've just finihed my fifth cycle of oral Etoposide. The plan was to have six cycles then scan. My CA125 has reduced from 229 to 59. I had a scan after the first two cycles and the bits on my peritoneum had reduced.
The downsides have been losing my hair again but was able to get a new wig which I really like and constipation which seems to be the norm with all chemos.
I have to take mine twelve hours apart on an empty stomach that means two hours after food or one hour before. I have found the best times for me have been eleven in the morning and the same at night.
I still have to sit around in the hospital after seeing the onc. waiting for the tablets to come from the pharmacy.Missed my bus last time so an extra hours wait:>( but at least it gives you the freedom to come and go on the bus which I couldn't have done after other chemos.
Best of luck with it.
Love Marilyn
Hi Viv
Unfortunately we do know are bodies and when things aren't right. Sorry about your news. Always disappointing not getting the news you want. At least (oh no those words again!! Sorry) your 125 has not gone up to the 1000 again like mine! Tho mine is better than this time last year even with the rise. I have had oral treosulphan but did not respond at all. The etoposide sounds interesting.
Glad you are out and about enjoying life. We are on a lovely caravan site just west of Exeter at the moment and having a good time walking( not too far) and went to a lovely 16 sided ghouse today. lots of sunshine so far
Think we'll be doing this next part of the cancer road together by the sound of timings.
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Trying to understand CA125
CA125 levels 
Ca125
Good CA 125, three months off - hurray
CA125 Question
