Ca125 up- Dr wants to keep the chemo going??

clynn13

How long do you continue the same chemo even when your ca125 is going up?? My onc. wants to continue with the same low dose avastin/taxol, even when the past 2 months my ca125 is up from 27 to 35 to 43. Dont you see a trend here? I had a cat last month which showed improvement from last years. There is a questionable "blip" on the scan that could be a tumor or not. I get conflicting stories on this because last year I was at a cancer hospital and the onc. said it was NOT cancer, and my onc. now says it may be. I am so confused at this point. I was telling my dr. that when my numbers go up that means a recurrance and he is telling me he is going by the scan. But last scan I had my ca125 was 380 now it is 43. It only makes sense to me that my scan would show improvement if my ca125 was 43 fromm 380. He just didnt get it when I pointed this out to him. He is not concerned by my numbers and even after we discussed a treatment change last month he still wants to keep going until my numbers go up to 100. WTF, that makes no sense to me. I have to will myself now to go to chemo because I think this is wrong. Gosh, this has been going on for almost 4 years, the same movie being played over and over again. Any thoughts on this would be helpful. Clynn

lindaprocopio

I feel your pain, but I agree with your doctor's strategy.
((((Clynn)))). No one can relate more strongly than I can (except maybe Nancy!) to the frustration of a rising CA125 even while in active treatment. But what great news that your SCANS didn't show disease progression! I have had a rising CA125 on the last 4 chemo drugs we tried, AND my CT/PET scans (given every 2 months because of the constant drug changes) always showed disease progression. So changing chemo drugs was always a 'no brainer'.

But I do see your doctor's side on this. Avastin/taxol is a PROVEN combo with one of highest statistical percentage chance of success, and I can see why your oncologist would be reluctant to walk away from it until he has evidence that it isn't working. They like to give you the GOOD stuff first and try and shoot you into remission. And that's because, as they work down the list of new things to try, unless your doctors have intentionally held back a 'big gun' for you, that statistical percentage of the average effectiveness goes down once you move away from carboplatin & taxol. What you switch to MAY work BETTER than what you're currently getting, but statistically the chance of that may be less.

I know you're not a statistic, and so all that stuff above doesn't address that your CA125 is going up and you feel ready to jump ship on your current chemo cocktail. (((Clynn))) But I'd ride it out another infusion and see if that CA125 continues to trend upward. Maybe it'll flatten out or drop. When do you have your next scan? Can you push to have that moved up and have it sooner?

clynn13

lindaprocopio said:

I feel your pain, but I agree with your doctor's strategy.
((((Clynn)))). No one can relate more strongly than I can (except maybe Nancy!) to the frustration of a rising CA125 even while in active treatment. But what great news that your SCANS didn't show disease progression! I have had a rising CA125 on the last 4 chemo drugs we tried, AND my CT/PET scans (given every 2 months because of the constant drug changes) always showed disease progression. So changing chemo drugs was always a 'no brainer'.

But I do see your doctor's side on this. Avastin/taxol is a PROVEN combo with one of highest statistical percentage chance of success, and I can see why your oncologist would be reluctant to walk away from it until he has evidence that it isn't working. They like to give you the GOOD stuff first and try and shoot you into remission. And that's because, as they work down the list of new things to try, unless your doctors have intentionally held back a 'big gun' for you, that statistical percentage of the average effectiveness goes down once you move away from carboplatin & taxol. What you switch to MAY work BETTER than what you're currently getting, but statistically the chance of that may be less.

I know you're not a statistic, and so all that stuff above doesn't address that your CA125 is going up and you feel ready to jump ship on your current chemo cocktail. (((Clynn))) But I'd ride it out another infusion and see if that CA125 continues to trend upward. Maybe it'll flatten out or drop. When do you have your next scan? Can you push to have that moved up and have it sooner?

You have given me such good advice
Thanks Linda, I was trying my drs. patience and I have results coming in this week for my ca1215. Lets see where that goes. As for a scan, I did not even want this last one becasuse I had no symptoms but since my markers went up 2 months in a row he ordered one. He was alarmed at the rise, yet pleased with the scan. So, I probaably wont get another one until he thinks I need one. I hope you get some great results with your chemo, I never knew what it was like to have everything you use not work. I will send some positive vibes your way. Clynn.

Mwee

I also agree
Dear Clynn,

I'm hearing that your ONC wants to give this course of treatment time to work. I've been on several courses of different chemos and my ONC usually wants to try at least 4 doses before evaluating whether or not to change. I also sometimes feel like I'm stuck in the same movie (Ground Hog's Day, I think), but maybe next round your numbers will reverse?
(((HUGS))) Maria

clynn13

Mwee said:

I also agree
Dear Clynn,

I'm hearing that your ONC wants to give this course of treatment time to work. I've been on several courses of different chemos and my ONC usually wants to try at least 4 doses before evaluating whether or not to change. I also sometimes feel like I'm stuck in the same movie (Ground Hog's Day, I think), but maybe next round your numbers will reverse?
(((HUGS))) Maria

I had this treatment for 10 months now
The numbers started to rise after the 8th month, so that is my main concern. I didnt metion that in my discussion. When I first recd this in July of last, my numbers went up for the first 3 weeks, then nosedived to a nadir of 27. I guess I will see what this weeks numbers show, I should have results on Wed. Thanks gals. Clynn

clynn13

Mwee said:

I also agree
Dear Clynn,

I'm hearing that your ONC wants to give this course of treatment time to work. I've been on several courses of different chemos and my ONC usually wants to try at least 4 doses before evaluating whether or not to change. I also sometimes feel like I'm stuck in the same movie (Ground Hog's Day, I think), but maybe next round your numbers will reverse?
(((HUGS))) Maria

I had this treatment for 10 months now
The numbers started to rise after the 8th month, so that is my main concern. I didnt metion that in my discussion. When I first recd this in July of last, my numbers went up for the first 3 weeks, then nosedived to a nadir of 27. I guess I will see what this weeks numbers show, I should have results on Wed. Thanks gals. Clynn

carolenk

clynn13 said:

I had this treatment for 10 months now
The numbers started to rise after the 8th month, so that is my main concern. I didnt metion that in my discussion. When I first recd this in July of last, my numbers went up for the first 3 weeks, then nosedived to a nadir of 27. I guess I will see what this weeks numbers show, I should have results on Wed. Thanks gals. Clynn

Avastin & CA-125
Dear Clynn

I have seen others post that Avastin puts the CA-125 on a roller coaster. You have to trust your doctor to put your mind at ease.

Maybe talking to a second opinion oncologist would make you feel better. In the Anticancer book, Dr. Servan-Schreiber writes that when the doctor is the patient, they get second & third opinions ALL THE TIME!

My personal opinion is that you are OK to stay the course. The scan is just a picture of your insides--something could be a calcified tumor but it is still a "nodule." Your insides will never look normal again anyway.

Please stay in touch.

Carolen