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huge CA125 rise!!

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I just got my ca125 results from 12/22, after completing the clincial trial. I rose from 192 to 662 in one month. WOW. my ca125 was 720 when I was initally diagnosed. Not sure what these means but it can't be good. The ct scan I had done at the same time didn't show much progression. Maybe I just have a higher concentration of the protein in my blood. Well, what more is there to say? I am going through most of the chemo drugs used for ovca.

I started Avastin/Cytoxan on Friday. A new ca125 was drawn too. Still hoping SOMETHING will work. Geez.

kayandok
Posts: 1223
Joined: Jun 2008

This has to be some kind of mistake. Just seems unreal, and with hardly any symptoms. I hope the new result is better, and the avastin/cytoxan kicks in asap.
Hugs and prayers,
kathleen

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

i'm not sure but doesn't avastin make your ca numbers out of wack? i hope that is the case for you. hang in there !
Colleen

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

I was readind the other posts maybe it has to do with the ca125 problems they were having with the labs . Try not to panic yet, I know easier said than done.
Colleen

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

This was taken at the completion of a clinical trial BEFORE Avastin.

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

No Avastin doesn't affect the CA125 numbers at all. I was on it for six infusions and my numbers went steadily down. Too bad they didn't stay down. :-(

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Dearest Nancy,

No way. There has to be some mistake. I heard there were some major issues with the CA-125 tests last week. Perhaps that's involved. You also said once that the CA-125 was not a good test for you...perhaps that's involved as well. I would trust the CT scans. They are what indicates whats happening. If you show no progression, than there isn't progression. I think that's the most important. What does Dr. S say?

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

All ca125 testing was delayed due to reagent problems. My blood sample from 12/22 was stored to be tested when new reagents were available. I guess it is possible to have a giant leap. I didn't call the doc. I got the results online. Do you go online for lab access? I DO have an increase in bowel symptoms. When I was tested I was having LOTS of diarrhea for several weeks which was a common drug reaction. Either way, I can try to rationalize it but a jump is a jump. I think they did take anothe sample on Friday, the day I started my new treatment. I don't see that marker posted yet.

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Dear Nancy,

Perhaps it's denial but I cannot believe it jumped so much...Please ask Dr. S what he thinks...we don't go on line to get results as we always want the doctor to be there for our panic attacks to tell us the reality. Ultimately it what the scans say..truly....I am praying praying praying that Avastin works for you. Are you going into the city for it, or are you going to Sleepy Hollow?

Cindy Bear
Posts: 560
Joined: Jul 2009

I just wanted to say first off, I love your updated family xmas photo. What a beautiful family you have. Secondly, I love that no matter what is going on with you, you are always so kind and supportive to everyone else, yet you don't sugarcoat anything.
Lastly, I am sorry to hear about the CA increase but as other's have said, it hasn't been a reliable marker for you, and maybe it will come down super fast once this new treatment kicks in. It sounds like you are still feeling pretty good and not having much in the way of symptoms other than some bowel issues. We are all praying and rooting for you. Let this new treatment be the one... Hugs, Cindy

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Nancy, I know that had to be a blow to you. I think the CT/Scan would have shown something with such a big jump in the CA125.

Could they give you a PET/Scan and maybe that would have some answers? I agree that you are one of the ones that are always so supportive and give your honest opinion no matter what.

I am praying that the Avastin/Cytoxan is the remedy for you. BTW I still haven't started with the Avastin for me yet due to the shingles I still have. I had a CA125 draw the other day and I haven't gotten the results of it yet; however, my cancer had grown in two months and since I am not on anything right now... scares me to death.

Nancy, I am praying for you, your husband and those two little sweet boys.

Linda

Christine B.'s picture
Christine B.
Posts: 137
Joined: Sep 2010

and in my prayers. I so want you to find something that works so that you can enjoy your life and little ones for years to come. I don't know if you remember that you were one of the people who replied with hope when I first came to this site with stage IV. Your hope became my hope. You helped me feel that I could put up with the hated colostomy bag and whatever else I would have to endure. My son turned 20 on December 27th. He was born with a rare genetic syndrome that severely effects his limbs and platelets. We never dreamed how independent he would grow up to be. He drives, goes to college (straight A's last semester), and is researching plans to attend USC school of Journalism in a year and a half. I want to be at his graduation! I want you to be at your children's graduations! That is my prayer for you!
Christine

poopergirl14052's picture
poopergirl14052
Posts: 1142
Joined: Nov 2010

Nancy,sounds like a mistake to me. Ask for a re-draw of ca-125. sometimes it is a fluke as my doc explained to me. Good luck stay strong.....val

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

(((Nancy))). ARGH. We both sit here at the same time with our unexplainable CA125 jumps, and a series of failed chemos behind us, and my oncologist's words echo in my head : "That papillary serous is a nasty character." Misery does NOT love company, kiddo. I take NO comfort in having you in this leaky boat with me; although I feel close to you in part because our journeys are so aligned. But my heart sank at your news.

And so I must believe that we are both about to make course corrections that will get us out of this current mess. OR, as the others are saying, these crazy CA125 jumps are unrelated to cancer progression, errors or other inflammations.

I have another CA125 draw scheduled for Thursday; and a big heart-to-heart also scheduled with my chemo oncologist. If my platelets have recovered (it will be 5 weeks on Thursday since I had my last chemo!!) I hope I will be able to get a very weak dose of carboplatin to hold me while we figure out what to try next if my bone marrow won't let me get chemo. I had my last every-3-months CT/PET scan November 29th, and wonder if they will move up my scan in the hopes of figuring out what the CA125 increase is about. So you are still in a better position than I am because you are able to currently GET chemo. AND you have a recent CT/PET to reassure you that you aren't dealing with some big cancer progression. My oncologists ALWAYS trust scans over CA125 which they consider a fickle indicator. Keep that in mind and try not to worry too much over this. You have a scan you should trust more than the stupid CA125 number. ((((Nancy))))

How do you feel on the new chemo? I looked it up as an idea to suggest for myself on Thursday. It looks like a powerful combo, but you are young and strong and a fighter. Try not to let your mind run wild until you get a chance to talk with your oncologist about it.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

thanks everyone for your words of encouragement. My next chemo/ca125 is Jan. 28th.
Linda, I didn't have a PET/CT this time. I had a regular CT scan. That was the protocol for the trial. My onc told me a CT alone is more detailed then the CT portion of a PET/CT. Since the trial protocol required a CT, this is what I got. I am not going to push for a PET. I figure it is not going to change my chemo regimen so why stress myself out. My last PET was in October, I think. My most recent CT did show no new areas, no dilation of the colon, no suspicious bone lesion. So, I am thankful!!! But, I wouldn't exactly describe myself as being in a better position. Actually, I have more areas then you AND I am starting to have bowel issues. Either way you look at it, it sucks.

Yes, I always felt aligned with you as well. Mawty too. We were diagnosed and recurred about the same time. I wonder how she is doing!!!

Hoping your blood levels pick up for chemo on thursday.

Where in PA do you live? Near Scranton?

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

Nancy,
What did he say about the jump up that was drawn on the 22nd and did you get the one from last Friday? I think I read your schedule right. That just doesn't sound right because there was not real change in your scan. You all are so really more informed about the stats and terms than I am but that seems odd. I was on on Avastin & daily Cytoxin for 6 treatments (still on Cytoxin). I had no side effects other than the high blood pressure and the last urine test showed a rise in the protine so my doctor stopped the Avastin and I have an appointment with Dr. S. at MSK on the 21st to see if there is a clinical trial that fits. If not, I will go on some other treatment. I am not in remission but the areas have had no change. I just hope the best for you and that these treatments that you are on now are easier for you than what you have been through.

Joni

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Did your cancer stay stable for the duration? Are you currently in remission? To view all the ovarian trials at MSKCC go to:

MSKCC.org, ovarian cancer, clinical trials. Let me know which one you are interested in. I did the one called Oral ENMD-2076 for women with recurrent plat resistant ovca.

I'm curious to see what he suggests. What treatments have you had thus far?

I didn't call the lab or doc about the ca125. What are they going to say? They must not have drawn one at my last visit. I will ask to have one drawn at my next infusion on Jan. 28th.

GOOD Luck!!

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

My gyn/onc is sending me to him to see what trial he thinks would be good for me. My doctor will take a look at the suggestions and decide what would be best for me. Go with a trial or just stay on the garden veriety. I have had almost every combination of chemo via IV & IP (over 40 treatments in 5 years). I am not in remission but considered "stable" since there was no change in the 2 areas from a CT/PET in Aug 2010 and another in Dec 2010. My CA124 is always low so not a very good indicator for me. My doctor does not feel that there is any urgency to remove them and prefers to continue with just chemo for now. Scares the hell of me but I know he knows what he is doing. I have also had a lot of surgery (9) so if he can delay one, it's best for me. I suspect that he will be removing them if there is no change when I do another scan. The waiting between treatments really gets to me but we all go through it. I hope the new round of treatments are easy on you. It seems like you really need a break from all of this. Maybe we'll see each other on the 6th floor one day.

Joni

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Well, it sounds like you've had a good run since you've been fighting 5years now. What stage did you start out at? How long was your longest remission? I'm trying to see if there is a correlation between length of initial remission and overall survival. My ca125 was low when I had little disease. I too thought it was not a good indicator for me as well. I am now thinking it was low because I truly had little disease. When I restarted chemo in January 2010 I had one spot on my colon and my ca125 was a 10. The area was confirmed by biopsy. I've had IP chemo as well.

I really am feeling good overal and thankful the past year that I've been on chemo has been relatively uneventful. What additional surgeries have you had? My understanding was that additional surgeries were proved to be of no benefit. Unless, of course, you have a bowel obstruction. I want to ask my surgeon about additional surgery when I see her in March. Let us know what the doc says on the 21st. Do you travel far?

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

I had the initial debulking followed by 8 rounds of chemo (very toxic) and can't remember the exact combo but it did include a platinum agent and one other. Then I had the CT/PET and it was clear. However, when he followed that with the second look, one tiny biopsy was possitive so I had 6 rounds of IP. I was then in remission for 6 months (1 yr after the initial dx)and then recurrance after that and I have been on chemo both IV & IP since then with tiny little breaks in between. I have had a total of 18 IP treatments and that is a lot considering it can cause so much scaring. The surgeries that I have had were to remove new tumors/nodules, my spleen and bowel surgey (anterior resection, a section of the sigmoid) because one of the tumors was pressing against it but not in it. I was lucky to have that re-attached and not have to have a second one to do that. He did mention to me that true picture for me is the CT/PET because my CA125 has always remained low even ehen there has been recurrance and never has he seen a significant rise so I have them every 4 to 6 months. I live in NYC so I'm lucky to not have to travel. Are you having to travel much? I am kind of excited to hear what he has to say. I never really felt like I needed a second oppinion but this should be interesting.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Where do you go for treatment now? I find your history interesting. I was dx stge 4, ca125 720. My inital surgery left me with an illeostomy. Dr. S's original plan for me was to do 5 rounds of carbo/taxol, illeosotomy reversal, IP x3 rounds. All of that went along as planned. When they reversed the ostomy the 2nd look biopsies were all negative anc ca125 was 7. 8months after completing all treatment, 14 months after diagnosis.

Your IP chemo was all cisplatinum? They left the IP port in? I was told that IP chemo was usually a one shot deal. With your subsequent chemos you did have regression or stability? I've on chemo for one year straight now with stability or growth.

My family live in NYC, I grew up there. I live 2hrs NorthWest of NYC.

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

Nancy,
I have a great gyn/onc. His name is Dr. Jamal Rahaman. All of my other doctors really are amazed at what all he has done for me. I was really lucky that he was recommended when I first found out. I think the first 6 IP tratments were cisplatin but I can't remember. They were brutal and very painful because they were so toxic. After the first treatment, he reduced the amount of the saline because I just couldn't handle the volume. The next 12 were a combination of IV & IP but I did not have the pain as I did with the first one. I still have the IP port in but he told me that will not consider any more IP tretments because of the scaring it can/has caused.I don't have a copy of the list of treatments that I sent to Dr. S. and I should have done that. I have always had a combination for almost every treatment. After my first and only remission, I have had several surgeries and alway on some combination of treatment. My last surgery was the bowel surgery and he removed all of the tumor growth in my pelvis. 3 weeks later I had another surgery to remove the lymph node in my chest. My last scan showed it had returned in the same place in my chest and a very small tumor very low in the pelvis but no other new areas. He feels that at this time it is stable and seems to be manageable with chemo. I really have a difficult time understanding this stuff but I get his point. Sorry to ramble on but when I think about this, it has been a very long journey and constant. I am very anxious to hear what Dr. S. has to say about my situation and what he recommends. I hope I get to meet you. Your pictures are beautiful!!!!!!

srwruns's picture
srwruns
Posts: 343
Joined: Oct 2010

I am so sorry to hear this and it deeply saddens me. Since the results are so radical I hope they rerun the test. It would seem logical when something this dramatic happens. While labratories have to have outstanding credentials, sometimes there is error. My thoughts are with you. Susan

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

So sorry to read your post. Its funny cos my numbers shot way up into the thousands last October but my CT scan appeared unchanged. I am sure your doctors have plenty of different cocktails of chemos to use and somewhere in there will be one with your name on.

You are not going through this alone, I too am on my second line chemo hoping to put a halt to this beast.

Love Tina xx

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Geez, is right. What a bloody drag. But the CT scan didn't show that much progression so I would take heart from that. Isn't surgery an option? I could be anything that made the number go up so high. You know how it goes with that number.. it's always hard to say. You could have a mild infection you aren't even aware of.

I was on Avastin/Taxotere and it worked great for me so take heart. Disease is back for me after only 2 months so don't know what's next. I too have run thru a lot of drugs.
Keeping my fingers crossed.

-Kate

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