ca125, what do you think of this?

I think you can feel pretty good about that CA125 & Pet!
Everyone is different, but my oncologist told me that someone's CA125 can swing up or down 5 points on any given DAY. Each of the 2 times I had disease progression after a remission, my CA125 SPIKED (from 11 to 155 the first time; and from 34 to 130 the second time). I stayed on my current chemo regime for 7 rounds, although the 5th round my CA125 only dropped 1 point; then the 6th round it climbed 8 points; and the 7th round it climbed another 10 points. Then we stopped (3 weeks ago) and did a CT/PET and although my cancer hasn't spread, my 2 malignant lymph nodes were bigger and the SUV on one of them was a staggering 17!

Had the CT/PET shown that the chemo I was on was shrinking those nodes, we would have stayed on it just like you are doing, even though my CA125 is in the 80's now. So I know that my oncologist trusts CT/PETs over CA125 as an indicator. CT/PET is very accurate for tumors bigger than 10mm; but is unreliable for tumors smaller than that when it comes to false-positive. (My oncologist said that Pet scans are almost always accurate when they show NO cancer, as false negatives are VERY rare even in tiny tiny tumors. But in tumors smaller than 10mm you can get a false-positive sometimes.)

My oncologists trust PHYSICAL symptoms over CA125 and CT/PET, but I have never ever had any kind of physical symptom, before my diagnosis or since it. I wouldn't be comfortable waiting for a physical symptom to have treatment. But I would be comfortable trusting that CT/PET and staying on that same chemo regime if I had a CA125 in the normal range and a stable scan. (((Nancy))).

By the way, I am getting a 2nd opinion on Tuesday at Fox Chase in Philly and am anxious to be back in chemo or treatment of SOME kind. If there is a bold move (surgery or radiation) I could do now that would buy me a couple of years, I am ready to do that. & if Fox Chase tells me on Tuesday that there isn't anything dramatic I can do that could make a significant difference in OS, I hope to be at peace with going back on the chemo-after-chemo regime my local cancer center thinks is my best chance. But I am very anxious since I have active cancer and have been on a 4-week chemo break getting my Pet scan and then waiting to get this 2nd opinion.

lindaprocopio said:

I think you can feel pretty good about that CA125 & Pet!
Everyone is different, but my oncologist told me that someone's CA125 can swing up or down 5 points on any given DAY. Each of the 2 times I had disease progression after a remission, my CA125 SPIKED (from 11 to 155 the first time; and from 34 to 130 the second time). I stayed on my current chemo regime for 7 rounds, although the 5th round my CA125 only dropped 1 point; then the 6th round it climbed 8 points; and the 7th round it climbed another 10 points. Then we stopped (3 weeks ago) and did a CT/PET and although my cancer hasn't spread, my 2 malignant lymph nodes were bigger and the SUV on one of them was a staggering 17!

Had the CT/PET shown that the chemo I was on was shrinking those nodes, we would have stayed on it just like you are doing, even though my CA125 is in the 80's now. So I know that my oncologist trusts CT/PETs over CA125 as an indicator. CT/PET is very accurate for tumors bigger than 10mm; but is unreliable for tumors smaller than that when it comes to false-positive. (My oncologist said that Pet scans are almost always accurate when they show NO cancer, as false negatives are VERY rare even in tiny tiny tumors. But in tumors smaller than 10mm you can get a false-positive sometimes.)

My oncologists trust PHYSICAL symptoms over CA125 and CT/PET, but I have never ever had any kind of physical symptom, before my diagnosis or since it. I wouldn't be comfortable waiting for a physical symptom to have treatment. But I would be comfortable trusting that CT/PET and staying on that same chemo regime if I had a CA125 in the normal range and a stable scan. (((Nancy))).

By the way, I am getting a 2nd opinion on Tuesday at Fox Chase in Philly and am anxious to be back in chemo or treatment of SOME kind. If there is a bold move (surgery or radiation) I could do now that would buy me a couple of years, I am ready to do that. & if Fox Chase tells me on Tuesday that there isn't anything dramatic I can do that could make a significant difference in OS, I hope to be at peace with going back on the chemo-after-chemo regime my local cancer center thinks is my best chance. But I am very anxious since I have active cancer and have been on a 4-week chemo break getting my Pet scan and then waiting to get this 2nd opinion.

CA 125??
Hiya
My CA125 went up the last time I had a check up & is now 71. I had a parital response to the chemo (6 rounds of carbo/taxol) and I am due to get a CT scan on Tuesday. Its funny how you just know the cancer is coming back. I felt so well before but since I found out about the numbers I have been thinking "Have I got ascites?" my tummy is bloated when I go to bed. But in the morning it is back to normal. Now I have this tightness and soreness in my chest area (I had fluid around my lungs before I was diagnosed) Am I imagining it? I know the imagination is a powerful thing.

It is awful weighing up the CA125 & the scans and then waiting for the results.

I've been reading about this vaccine..........I wonder if they will invent something for us????? I hope so.

Much love Tina xx

Hi Nancy,
what current regimen are you going to stay on? What is your medical team's read on all this? I think with so little disease, if you could find the right chemo, you could zap those babies. Have you done dose dense taxol yet?

I hope you had a wonderful cruise! Loved the pix!

katlhleen

PET
Does anyone know if Medicare will pay for a PET scan? I have never had one nor be offered one, even when nothing shows up on the CT scan. I have an idea it is Medicare payment but don't know. Otherwise, I am going to be satisfied with CT's and a CA1125 of something less than 300 showing the current chemo is holding the cell growth back. I am finding the cisplatin + gemzar very easy to tolerate so far. CA125 is 61. Saundra

nancy591 said:

thank you all
Thank you all for your words of encouragement. I found out on Saturday the ca125 had risen so I haven't had a chance to speak with the doc about it. You guys are right though, the scan is the ultimate decider.

I am on Gemzar 2 weeks on, 2 weeks off. I've had 4 cycles. Will rescan in another 3 or 4 cycles.

Thanks for the picture compliments too. Picture was taken on our cruise to the Bahamas. The vacation was lovely!!! I hated to come back to reality. First day of school is tomorrow. BOOOOO!!! I wish I could keep them home with me forever! My youngest is starting Kindergarten. This is the first year they will be riding the school bus....if they get on!

Love the pic as well! Such a
Love the pic as well! Such a beautiful family :-)

I had a rise in CA 125 (although I had just had a significant upper respiratory virus) and will be back on Gemzar, however my PET was clear. Gyn-onc had wanted to do a couple of 'insurance' rounds beyond what he felt was 'remission' and I took a vacation break. It's been 2 months since my last dose but PET was just a week ago. Of note, though, is the low dose of Gemzar was working for me, only 600/m2 and usually only getting 2 of 3 planned doses/month.
Hope your little ones are excited about the new school year and the bus-riding adventure. I just became a 'grand'ma but it feels like being a mom all over again.

Thinking good thoughts and sending positive vibes your way. --Annie

nancy591 said:

dose
I've been wondering what a typical dose was since Kathleen mentioned doses in a previous post. I orginally started out at 800 but was dropped to 600 when my RBC dropped when combined with the carbo. When the carbo was dropped they only raised me to 650 for the remaining 2 cycles. I asked to be bumped up to my original dose since I am no longer on the carbo. Hopefully it will help knock it back. Gemzar alone gave you a clear pet???

Good luck with the new Grandchild!!!!

According to my gyn-onc,
According to my gyn-onc, standard Gemzar dosage is 1000mg/m2 each week for three of four weeks. He originally started me at the lower 800 because I had already had blood count issues on Doxil. When I only got 2 doses first month he lowered to 600 to see if I could get in three doses. Again I only made it for 2, but by then ca125 was dropping so we agreed to continue with the 600, try for 3 but accept 2 doses and see what happened. He says he routinely uses it as a single agent and didn't see any point in overly attacking my already suppressed bone marrow. So I'm back now for a couple months of the same format.