That didn't last long

I'm thinking of you and this latest path that's opened in front of you. I agree with the others -- don't let anyone tell you now long you have. There is SO much variability and so many factors that all anyone can give is the statistical mean, not a particlarly helpful number. When I first met my new gyn onc, I told her I didn't want her to tell me how much time I have unless she believes I'm down to a few months, because I feel having a specific "expiration date" is unhelpful to mental health. She laughed and said, "We're going to get along really well -- I NEVER suggest time left or average survival because there's just too much variability for it to be relevant to an individual patient." Maybe her wisdom will be useful to you.

evolo58 said:

I think my gyno-onco described things well.

ANY chemo has about a 20% chance of working. This is why doctors very often combine two treatments ... to up the odds.

Carbo-Taxol generally works the best for many, but for many women, it doesn't do the job. This does not mean you're doomed. There are other chemo treatments to try ... Doxil, Gemzar, Abraxane, etc. The percentages are about the same for each. It's a matter of finding the best odds for YOU. (My old gyno-onco also said the same thing, so that makes two gyno-oncos.) 

In addition to chemo, if you haven't had radiation yet, that is still on the table. There are also surgical options.

Lastly, clinicial trials or "other" treatments do NOT always mean those are your last resort. Sometimes, a particular drug or treatment shows great promise for your particular situation from the onset, which is why it's really important to get genomic testing done on that tumor. 

Progression/recurrence is worrying. Of course it is. That nasty piece of work isn't going to give up easily. Being resistant to a chemo is worrisome, since that generally means you have one or more fewer options. But it doesn't mean to start adopting that vulture. Yet. 

And my current gyno-onco is the same way, Tamlen. That's how I knew she is a keeper. 

EDIT ... Forgot something. BOTH my gyno-oncos ... the first one (Dr. Gloomy) and the second one said not to be too alarmed if CA-125s are much higher than first-line. A higher percentage is not an accurate measure of the extent of the situation, though it does mean something is wrong. Mine was REALLY weird. It shot to 770 after a bout with the Bowels from Hell (I suspect IBS, IBD or diverticular issues), then went down to 510 within a six-week period of no treatment whatsoever. 510 is still too high, and my original CA-125 reading in 2017 was 127, but when even Dr. Gloomy told me to NOT be too freaked out, I resolve not to be! I'm too freaked out dealing with this trash can fire of a progression as it is. 

just prior to surgery. So the tumors I had did not change that number hardly at all. After surgery it went down to 9.9. not a good marker for me, a false negative. That is a bit scary. 

Tamlen said:

Big hug, DM_K

I'm thinking of you and this latest path that's opened in front of you. I agree with the others -- don't let anyone tell you now long you have. There is SO much variability and so many factors that all anyone can give is the statistical mean, not a particlarly helpful number. When I first met my new gyn onc, I told her I didn't want her to tell me how much time I have unless she believes I'm down to a few months, because I feel having a specific "expiration date" is unhelpful to mental health. She laughed and said, "We're going to get along really well -- I NEVER suggest time left or average survival because there's just too much variability for it to be relevant to an individual patient." Maybe her wisdom will be useful to you.

ANY chemo has about a 20% chance of working. This is why doctors very often combine two treatments ... to up the odds.

Carbo-Taxol generally works the best for many, but for many women, it doesn't do the job. This does not mean you're doomed. There are other chemo treatments to try ... Doxil, Gemzar, Abraxane, etc. The percentages are about the same for each. It's a matter of finding the best odds for YOU. (My old gyno-onco also said the same thing, so that makes two gyno-oncos.) 

In addition to chemo, if you haven't had radiation yet, that is still on the table. There are also surgical options.

Lastly, clinicial trials or "other" treatments do NOT always mean those are your last resort. Sometimes, a particular drug or treatment shows great promise for your particular situation from the onset, which is why it's really important to get genomic testing done on that tumor. 

Progression/recurrence is worrying. Of course it is. That nasty piece of work isn't going to give up easily. Being resistant to a chemo is worrisome, since that generally means you have one or more fewer options. But it doesn't mean to start adopting that vulture. Yet. 

And my current gyno-onco is the same way, Tamlen. That's how I knew she is a keeper. 

EDIT ... Forgot something. BOTH my gyno-oncos ... the first one (Dr. Gloomy) and the second one said not to be too alarmed if CA-125s are much higher than first-line. A higher percentage is not an accurate measure of the extent of the situation, though it does mean something is wrong. Mine was REALLY weird. It shot to 770 after a bout with the Bowels from Hell (I suspect IBS, IBD or diverticular issues), then went down to 510 within a six-week period of no treatment whatsoever. 510 is still too high, and my original CA-125 reading in 2017 was 127, but when even Dr. Gloomy told me to NOT be too freaked out, I resolve not to be! I'm too freaked out dealing with this trash can fire of a progression as it is.