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What chemo for 1st recurrence ?

Havehope2
Posts: 22
Joined: Mar 2011

I had 6x IP/IV cisplatin/taxol and had a 16-18 months of NED (CA125 started to rise from 8 to 24 in Dec 2012, CT scan clean; March 15 CA125 - 39 CT scan shows tiny ( less than 5mm) nodules in upper abdomen. I wanted to do 6x carbo with 18 weekly Taxol, but my onc suggested 6x carbo/gmzar x12. I am 48 and took cisplatin hard but taxol easy. No neuropathy. I was stage 3B, with no cancer left after surgery. At DX CA125 was 3,600 and started chemo with CA125 at 24. Cannot have Doxil (had it with BC back in 2008).

Anybody can tell me how much remission they have/had with their treatments for 1st recurrence ( any treatment).

Thanks.

123Miley's picture
123Miley
Posts: 91
Joined: Jan 2013

Well I have not had much remission since my first recurrence in Sept of 2011 - BUT - there are a lot of good options and you can also find ladies that have had years of remission after a recurrence with a variety of different drugs.  

I was diagnosed at a 3C.  For my first recurrence we retreated with carbo/taxol.  The carbo got pretty hard on me after so much and so after this last go round is pretty much off the table for me.  I was on it the first time for nearly a year - and then was NED for nearly 4 years.  But second time, it combined with the taxol only bought me about 6 months before my marker started rising again.  So it was time for something else anyway.  One of the things I have learned is that after being treated with a platinum drug (carbo and cisplatin) what is left over or comes back is possibly resistant to the drug and so a different agent might be more effective.   I started on Doxil in January and things are looking good so far.  My CA125 got as high as 190 and after 3 treatments is down to 146.  I will take that.  My onc and I did talk about taxol again.  It is still an option but decided to go with a less drastic option for now.  I can always try the taxol again later - by it self or with something else.  You said you could not take Doxil any more - but there are a lot of different options.  I have seen gemzar mentioned a lot on here.  Another common one is topotecan.  Some have had success with a Taxol/Avastin combo.  I try to be as informed as I can but at the end of the day - pretty much follow my doctors recommendations.  

The crazy and frustrating thing with this stuff is some drugs work really for some and not so good for others.  My doctor is a highly respected and skilled surgeon / oncologist and sometimes when we are making decisions I feel like even HE is throwing darts! LOL  But as ambiguous as it sometimes seems I know he is making the suggestions that are the best fit for me and my case based on his experience.  

Looks like you also had breast cancer - ?  Wow I am sorry.  My older sister is a 10 year breast cancer survivor.  We had the genetic test done and we were both negative - what are the odds?  Two sisters - one with breast and one with ovarian cancer and no genetic link.  As much progress as has been made I am convinced there is still a lot they don't know.  

It sounds like you are doing well and are on the right track.  Good luck and hang in there!

Havehope2
Posts: 22
Joined: Mar 2011

I agree, the doctors know something but not too much.  My onc explained to me today that since I had Taxol twice she will want to keep that for later. She thinks since the cancer has not seen Gemzar yet I might get a better change for a longer remission with a new drug (first dart!). I am still thinking. I have until April 4 until I start chemo. Also I didn't know that I can do carbo as long as my body can take it, and then have a break and take it again since it worked the first time for 16 months. Also she said that down the line, she will give me Doxil, too if necessary, but not now. 

I wish you and your sister only NED years. 

Havehope2
Posts: 22
Joined: Mar 2011

Thank you.

Havehope2
Posts: 22
Joined: Mar 2011

Thank you.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I am in my first recurrence, after being NED for two years.  I was exquisitely sensitive to the Carbo/Taxol I got for first line treatment, so this time around, we did Carbo,  but the results were not that great.  Next was Gemzar.  Had to reduce the dose, then just give up on it altogether because it was killing me.  I was getting transfusions every other week and still couldn't keep my hemoglobin above 8.5.  Finally, we tried Doxil.  I tolerated it very well, but it didn't help at all.

I am scheduled to stat weekly Taxol, plus an experimental drug on Monday.  I got the last spot in a clinical trial at the University of Oklahoma.

Just an FYI....my CA125 was 4,000 when I was diagnosed and after debulking and first line treatment, it went as low as 4.  For the next two years it was 6 or 7, then settled in at 12 and stayed there for months.  I had a confirmed recurrence (via PET/CT scans) last April, and my CA125 was still 12.  It just recently jumped to 20.  Don't let those numbers mess with your mind.  You can have "high" readings and be perfectly fine, or "low" readings and not be fine at all. 

Carlene

 

 

Havehope2
Posts: 22
Joined: Mar 2011

I used to follow your trips to NYC when you were in the vaccine trial. I am also going to MSKCC, but different onc. I wanted to do carbo/taxol weekly but mo onc convinced me to start with carbo/gemzar to keep the taxol for later and also to give my cancer "a surprise" drug. I hope it will give me another remission. 

Good luck with your trial. I wish you a long remission.

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