I finished my second line chemo (carboplatin/taxol) on 16 February and go today to see my oncologist about the results. I know my CA125 was still 177 by the end of the 5th chemo so I'm feeling slightly apprehensive about what I'm going to be told.
On my third chemo the taxol was reduced because of damage to my nerve endings. I also have a stoma which was done during my de-bulking surgery. This was being quite badly affected during the chemo, again this was put down to the taxol.
I have read that taxol only does 7% of good, yet is the main cause of damage to nerve ending, losing hair etc.
I have complete faith in my oncologist and feel she's giving me 100% in trying to keep me alive but like everybody else, the last 18 weeks have been pretty tough and I wonder if not having the taxol at all would be a risk worth taking.
So, I'd be interested to know for future chemos if anyone has decided not to have the taxol and just gone with the carboplatin and if their oncolgists were okay about their decision.
Cathy
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cathysal
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I have finished my second line chemo carb/taxol and I have problems with nerve endings, I don't regret having the taxol as I like to give ovca the best shot in answer to your question ... I don't think you will get a choice for taxol as my oncologist said they wouldn't give taxol for a third time as it would do too much damage they go on to something else. Try not to worry too much about the taxol being reduced as I had a reduction the first time but still went in remission for two and a half years, I am now in remission again even though I was told I only had about a year to live so I hope my remission is long.
Thanks for your reply. I didn't know that about them not giving it for a third time - I think I'm getting too much ahead of myself at the moment!!
That's great that you were in remission for two and a half years - I got eleven months after my first - and I wish you all the best for this time around, I hope you get the same or even longer in this lottery.
I had carbo/taxol twice, with a three year gap in remission. Both times the taxol dose had to be reduced because of nerve pain in my hands and feet but this did not appear to affect the good outcome. When, after another two years remission, I needed a third line treatment my Onc did not want to blast my nerves wiith Taxol again, so I had 6 x carboplatin only.
I did then have only about 9 months remission, but as I am now seven years along the road from first diagnosis I am not overly surprised that the remission time has been shorter. I am currently undergoing 4th line carboplatin only, with good results so far, but I do know the OC wont be going away and for the future my Onc says he will consider weekly taxol and maybe gemcitabine, but there are also other drugs which he feels will also be well worth trying. I plan to keep on trucking for years yet!
So yes, just carboplatin is certainly worth a try but your onc may well have other ideas for you. I am sure whatever she suggests will be in your very best interests so you can rest easy on that level.
Best of luck
Love Patsy x
Hi Cathy
when I said I was in remission for that long what I didn't say was that I had symptoms of it back for well over a year but my oncologist ignored it for a very long time I eventually got a ca-125 done through my GP it showed a risen count but my oncologist chose to ignore that, so I then had another blood test which started the ball rolling to have more treatment but it took at least six months from blood test to start treatment by then it was too late to go on any trial and was told that he would attempt to shrink it but it wouldn't go away and that I had about one year to live, anyway it has gone so I am now in remissiion but was reminded that it will come back. The outcome was far better than what they expected.."what a roller coaster"... onward and upwards.......
Thanks for your reply. It's always interesting to hear what other people have had. I had the scan and saw my oncologist yesterday and the tumours have shrunk and my CA125 is down to 141. Not brilliant, but better than I thought it was going to be. So it's now a case of 'listening to your body' again! My trouble is because of the stoma I have a lot of gurgling and grumbling around the stomach area all the time, so it's making the decision - is it the stoma or something more sinister! It's so great that you're seven years down the road - that really gives me hope that they'll be able to keep coming up with things to try.
Hi Gwyneth
Yes, it's a strange one isn't it living with this knowledge that we can't be cured but I try and take heart from the fact that so many people who come on here have survived for much longer than the 'statistics' say.
The best of luck to you both for the future. I just want to get back on my feet and get on with living until the next time! I'm going for a blood transfusion in a couple of days so hopefully that'll really perk up my energy levels. I might even feel like going out shopping again!
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