That didn't last long

Tamlen

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.

Forherself

DM_K said:

I wanted my abdomen tapped so

I wanted my abdomen tapped so bad to get relief when I was there a week ago and cried when they said there wasn't enough.  I'm just learning to live with it right now until I start chemo again.  I asked about surgery after I was told this distention could also be tumor related.  My gyn onc said that surgery isn't an option right now, chemo therapy is the next step. 

Well that does make sense.

I am sorry you have to deal with this, like all of us here.  I believe in prayer, so I wil pray that your discomfort vanishes.   And that the chemo works for you.  

BluebirdOne

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. 

my CA125 said 17

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. 

barnyardgal

My doctor didn't want to give

My doctor didn't want to give me odds for 5 year survival but she eventually, reluctantly, did. I just wanted to know what I was dealing with. In breast cancer, it is common to do 4 rounds of adriamyacin and 4 rounds of taxol/carbo. Adriamyacin is not platinum based. As I was allergic to Taxol and desensitization didn't work I got 7 rounds of adriamyacin and carboplatin. The negative of the adriamyacin is that it is more toxic, especially for the heart, so there is a lifetime limit.  It used to be used for endometrial cancer but due to potential heart issues and as not everyone got through the treatment as it made people more nauseous, etc. taxol became more commonly used. The newer doxil is treated so it doesn't cause heart problems, and it is easier to get thru than adriamyacin. There also isn't a lifetime limit. The newer doxil is not for front line treatment. But if someone is younger, and clearly platinum resistant, and just recently finished treatment I wonder why they wouldn't try the adriamyacin instead as they do in breast cancer. 

DM_K

barnyardgal said:

My doctor didn't want to give

My doctor didn't want to give me odds for 5 year survival but she eventually, reluctantly, did. I just wanted to know what I was dealing with. In breast cancer, it is common to do 4 rounds of adriamyacin and 4 rounds of taxol/carbo. Adriamyacin is not platinum based. As I was allergic to Taxol and desensitization didn't work I got 7 rounds of adriamyacin and carboplatin. The negative of the adriamyacin is that it is more toxic, especially for the heart, so there is a lifetime limit.  It used to be used for endometrial cancer but due to potential heart issues and as not everyone got through the treatment as it made people more nauseous, etc. taxol became more commonly used. The newer doxil is treated so it doesn't cause heart problems, and it is easier to get thru than adriamyacin. There also isn't a lifetime limit. The newer doxil is not for front line treatment. But if someone is younger, and clearly platinum resistant, and just recently finished treatment I wonder why they wouldn't try the adriamyacin instead as they do in breast cancer. 

My gyn onc did mention

My gyn onc did mention adriamyacin as an option.  Apparently we are going to go with clinical trials if I qualify.  He recommends that route first.  I don't know if adriamyacin is going to be part of a clinical trial combo but he definately mentioned it.  

DM_K

Thank you Ladies for the

Thank you Ladies for the encouraging words and thoughtful prayers.  You all are the best!

DM_K

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. 

Thank you evolo for the

Thank you evolo for the wonderful infomation, I never heard of some of those chemo drugs.  I did have 30 zaps of radiation and 2 bachytherapies.

evolo58

BluebirdOne said:

my CA125 said 17

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. 

I read

NOT official, and I haven't been able to verify, but up to 25% of CA-125s can have false positives or false negatives. 

It that is true, wow. Just wow. 

If that is not the case, though, I've certainly read of false negatives and false positives in CA-125s here and elsewhere. It's an alarmingly high percentage, even if it's lower than 25.

evolo58

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.

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. 

BluebirdOne

evolo58 said:

I read

NOT official, and I haven't been able to verify, but up to 25% of CA-125s can have false positives or false negatives. 

It that is true, wow. Just wow. 

If that is not the case, though, I've certainly read of false negatives and false positives in CA-125s here and elsewhere. It's an alarmingly high percentage, even if it's lower than 25.

It is a more accurate marker in Ovarian Cancer

from what I understand, but it seems for us the numbers are all over the place. I know that I was a 1a, UPSC but I had a nasty large uterine tumor that did not invade deeply but filled the cavity, and cancer in a large polyp. So now I worry that the CA125 did not increase above the mid normal range despite the two growths. My team hasnt tested for CA125 since before surgery. My internist did the test in August, none done since. I am not too concerned, but aware that the test may not work for me.