ca125, what do you think of this?

nancy591

background history: initial ca125 750 prior to surgery, 70 prior to chemo, dropped to 7 6wks after completing all chemotherapy.

Recurrence suspected due to ongoing bowel symptoms, ct clear but PET showed hypermetabolic area. ca125 was 12, biopsy 3wks to confirmed recurrence was positive, ca125 dropped to 10.

Started chemo 2months later, January '10 for first recurrence, ca125 had risen to 15. I've been on 2 different chemo drugs since restarting and my ca125 has jumped up and down. My last ca125 was 25 on 8/4/10.

I had a PETscan this wednesday, 9/1/10 and it showed stable disease, maybe slightly reduced lymph node, no increase in SUV to the other 3 lesions on my colon. It was decided to stay on my current treatment regimen. I go in for chemo 2 days later and they draw a ca125. My ca15 has risen 8 points to 33. I don't great crazy about the ca125 because I know it is not a good indicator for me. But of course, I'd love to see it going down. Do you think you'd be concerned about the rise? Is the pet/ct the ultimate decision maker on disease status?

lindaprocopio

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.

eward

LOVE your new photo, Nancy.
LOVE your new photo, Nancy. You and your children look positively gorgeous! What lake were you at?

The CA125 is such a stinker. My mom's was all the way up to at least 3800 with her first recurrence this spring. Doxil wasn't helping much, it seemed, so they recently switched her to Avastin/Methotrexate/Cytoxan. Her number came down and was at 1950ish three weeks ago and yesterday only went down 80 points. That stinky number has really bummed my mom out, because it didn't come down as fast as it did the the last 2 times it was checked. Her lymph nodes have shrunk and her fluid in her pleural cavity seems to be slowing, but those positive signs have almost been overshadowed by the NUMBER that didn't come down as much as we expected.

I sure hope your next CA is the same or less. I would say try to put the number out of your head as much as you can until the next test. Your number has jumped around and might not even be a reason for concern.
Hugs to you,
Eileen

Tina Brown

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

Lisa13Q

Hi Nanct
How is my other favorite New Yorker? PET is the ultimate decider....It is such a great picture of what is going on....CA_125 is crazy at times. A cold can make it rise. I am preying for stable disease right now for my Mom....I would say Congratulations on that. Clearly, your current treatment regimen is holding the beast back. My mother's CA-125 was totally normal and when they did the last CT/PET she had spots everywhere...including the liver....Thank God we did the PET, as had we relied on the CA Number, she would have been in big trouble...so the PET takes the cake. Hope you had a GREAT cruise. Will be a MSKCC this Tuesday.....Say a prayer for my Mom. She is terrified.

kayandok

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

BonnieR

Sounds Pretty Good
Dear Nancy, Stable disease is a great thing, especially from a pet/ct, congratulations. I do not focus on the ca125 as too many things can affect it, even the processing of it. They use the ca125 because it is all they have at this point. Celebrate Celebrate Celebrate.

Hugs ♥ Prayers Bonnie

saundra

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

clamryn

My doctor and CA125
Nancy, My doctor would definitely go by the PETscan. He has told me over and over again that he doesn't treat the numbers, he treats the patient. I don't think you should be concerned. By the way, you look beautiful in your new picture and your children are precious.

Linda

nancy591

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!

upsofloating

saundra said:

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

I just recently had a PET
I just recently had a PET and Medicare denied because diagnosis code was just generic 'uterine' cancer. I have papillary serous ca which acts/is treated like ov ca. At PET center I was told only certain cancers are approved by Medicare but I believe ovarian is now one of them. They managed to get me into a study that was being done to evaluate significance/value of PET scans for other cancers. --Annie

upsofloating

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

upsofloating said:

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

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!!!!

upsofloating

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.