How high is high for the CA27/29?
I know there is a lot of controversy re tumor markers....some of you don't have the test done, some oncos don't use it as a test because it is not always an accurate diagnostic tool However, in my case, they have ALWAYS been very accurate and when they go up, I have always had either an increase in tumor size or a new area of mets. I am thinking they told me a long time ago anything under 30 was considered in normal range. Ok, my question.....for those of you who do have the CA 27/29 test run, how high have your results been? I just got my results today and they are up to 499. Six weeks ago they were 324. At the end of Dec.09, I think they were only 126. Back in 2000 they were 549 and I was thinking at one time they were in the 700's, but in going back and reading my records I think the 549 was my all-time high. Aromasin took them all the way down to 18 in 2002 and that is the lowest they ever were after we started checking them. I am thinking I had read posts on here where women had some results up in the 1,000s, but can't swear to this as my memory is not what it used to be. Obviously since my numbers are rising so rapidly, the medicaiton I have been on is NOT working, but this still needs to be confirmed with scans. I actually feel really good, but know that this feeling won't last since things seem to be progressing. Anyway, I was just wondering how high some of your test results have been. Thanks.
May 2012 Update
When I started this thread I didn't know what high was.....in Dec.2011 the CA 27.29 was 7.668. That was after starting low dose weekly Adriamycin, but before it had actually kicked in and started the numbers going in the other direction. As of this week, the numbers are down to 885.2. I really had little hope of ever getting below 1,000 again, but this particular chemo seems to be working wonders, so now the new question is How low will the go?
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Marybe, the highest mine ever got was 2100, this was after one month of chemo. At the start of chemo they were a little over 1000, the doctor said the rise was common as the cells were dying and "shedding." The numbers have come down consistently since then and are now in the 500s (I've had six months of chemo so far). Scans done at the 2-month and 4-month mark show that the chemo is working.
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Petjunkie, Well, maybe I should wait until we see what the scans show before stopping the megace. I am not happy with the fact it really has caused me to gain weight since I feel like I am starving, BUT if there is a chance it is working, I would gladly take the extra pounds as opposed to some of the SEs caused by chemo. How are you doing with the taxol?
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Hi Marybe:
I'm sorry to hear that your tumor markers are so high. I would like to know if anyone's ONC has changed treatment based only on tumor markers.
My lab shows that normal 27-29 is up to 40. Mine are not as high as yours but they slowly started growing for 1 year and 4 months before anything showed in my scan. (Went from 42 to 193.9.) Also, a month before it showed in my scan, my ONC had nodes in my neck biopsied and came back positive. I have ILC so I thought that might be why it did not show up. Anyway, when it finally showed, it was in my shoulder, spine and liver. I think if they had changed meds earlier, it would not have gone to my liver so I don't want to wait so long next time.
After 1 month on Abrazane and Avistan, CA27-29 rose to 225.4....then dropped at month 2 to 151.8 so I'm hoping this chemo is working for me.
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At one point my onco did change my treatment when there was a jump in my CA27.29. That was when he took me off aromasin and started me on faslodex. He did not do scans to see if anything was changing for some reason, just based his decision on the CA27/29. But as I said earlier, the #/s have always been an accurate tool in my case. The onco I consulted with at MDA thought I was taken off aromasin prematurely since I had such great results with it and that is why he recommeneded I try it again since I had been off it of for quite sometime and often if something worked once, it will work again after a break. But it didn't. Beverlyp.....abraxane, avastin works....I probably should have stayed on it, but was afraid the SEs would be permanant if I didn't get off of it...it did however shrink all my tumors as well as took #'s down.
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My doctor will not change treatments based on Tumor Marker alone. He says we must see some progression on scans. I have mets to lungs and sternum.
As for the 27.29 test, I know someone whose was as high as 19,000. My high is 1300.
Jessica
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Hi Marybe, my markers have been rising for the last 5 months. The last one was 217. In almost 2 years, this is the only time I have had a steady rise. My recent scans showed stable disease. (Although, they did not do bone scans, so there may be progression in bones.) My onc switched me to Faslodex. She said no one at UT was doing 2 shots and that I would have to pay for the 2nd shot because insurance would not cover it. So I am doing one shot.
I know my markers don't seem very high, but I think it is the trend that everyone talks about that convinced my onc to change treatments.
I also have ILC and it may be that the tumors don't show up as well on scans. (sheeting rather than lumps)
Jackie
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mine were 154 and after all the scans etc there was extensive mets to hip, pelvis, spine, virtually all my ribs, sternum and a tiny spot on my lung. i've been on arimidex and zometa for three months and will be reevaluated mid may to see how i'm responding.
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My onc told me that normal is up to 29. The highest mine have been is 31. Hugs, Mazy
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Marybe and Beverlyp,
My tumor markers have been reliable so far and when they started rising slowly my Oncologist at MDA said that we could change my medication now or wait until the progression shows up on my scans. Of course I chose to change the meds right away !! My TM went up the next month and then started going down and have slowly been moving down since.
My scans have always showed stable. Now that my TM are the lowest they have ever been I am hoping that my scans in June will show the Tumors in my bones (more than they can count)are getting smaller or starting to disappear.
My highest TM was 175 and a couple of weeks ago it was the lowest at 37. I think TM are very individual - even as far as the numbers go. I believe that my 175 could be someone else's 550 and we could have the very same amount of cancer in our body. For over a year my tumor makers were steady around 88 and my scans showed stable. I am praying that 37 is my NED number.
Please know that all of this is just my thoughts on Tumor Markers and me. I could be way off base on everything. It seems just when I THINK I have things figured out this crappy, shi&&y cancer shows me that I know absolutely NOTHING !!!
Take care and hugs
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Thanks for the info on changing treatment based on TM counts. My ONC did not want to change based on counts because he said it could be a small cell putting out lots of TM, not necessarily tumor spread. I guess that's why some people have really high counts - their cancer puts out more markers.
I think next time I will ask to change based on time (such as 6 months) and continuous rise of CA 27-29. Hopefully, there won't be a next time, but I have to be realistic.
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Tomorrow I am having my CAT scan so will let you know how accurate my tumor markers were this time. All I know for sure is that I still feel really good. I couldn't get the bone scan scheduled until the following week, but am most concerned about the tumors in my liver anyway so at least will know what they are doing. I find it encouraging that some of you have had numbers in the 1000s and higher and are still doing well.
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Marybe - mine started out at 1500 and have never been below 300, even tho much of that time my onc considered me stable based on PET scans. Just started on Gemzar due to "slight" (onc's word) progression on scans coupled with TM increase. I'd guess in the 400's now. Good luck tomorrow.
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Upon my initial diagnosis of stage IV with many mets to spine this past Dec, my TM were 12. I just had a follow up PET scan and compared to my first one it is showing that the activity has decreased. My TM are now 13. Go figure!!
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Called today for the resuluts of my CA 27/29 which was run on May 12.....it was 659. It was 499 April 23,so they are going up fast. The rise is consistent with the bone and CT scans which showed increase in size of existing tumors as well an numerous new bone mets. So we are calling it quits with the hormonal treatments and Wed. I have my lst navelbine treatment which so far I have had no ill SEs from, but know it is way to early to say if it is an easy chemo or not.
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I am now on Navelbine, along with my every other month zometa (asked the onco if I could get it less frequently so no longer get it every month) . I had my 5th treatment on Tues and they did my CA 27/29 and it came back 476. Still high, but I am thilled that it has gone down from 659 that much in less than a month. A few weeks ago I sat next to a woman who was very concerned that her tumor markers were 24 or something like that (forget now, but know it was below normal range)......all I could think was Wow, wish mine were that low. I know it is not a conclusive indicator, but with me it always has been.
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Marybe,
My TM's have always been a good indicator, so I know you must be thrilled to have them drop so much in a month! My onc monitors CA 15-3, and mine dropped 30 last month. I was a little disappointed, but, at least they're going in the right direction!
Linda C.
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Linda, Don't be disappointed, 30 is significant drop. Mine just did a huge drop for some reason this time, but I doubt if it will continue to be that much every time. I like you am just happy they are going in the right direction since they had done nothing but climb up after I went off Abraxane last July.
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I am once again questioning this on another thread, but found this old one I started so will ask on here again. I just got the results yesterday when I called in and they are now up to 1,438 this is the highest mine have ever been, but each time we run the test now, that is the story because they have not gone in the other direction forever...so each time it's the"highest" Now I am doing Gemzar and this is the lst time we have done the CA27/29 since starting it the end of Dec.
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Marybe,
As you know tumor markers aren't reliable for lots of ppl...but I see you said they are a good indicator for you. Same thing is true for me. When my CA27.29 starts increasing and never goes back down that means my cancer is on the move. My CA27.29 is increasing and I know it's my bone mets causing it. In fact I just had a bone biopsy on my ilium. The onc ordered it so we could make sure my cancer hasn't changed...this way we can choose the best trt.
Your CA27.29 is rather high...so it does sound like something is going on? But as you know markers are only one tool our onc's use...just a piece of the puzzle. Now it's time for them to scan to see what's going on...if anything? I'm not sure how long you have been on the Gemzar...so maybe you need to give it a bit more time? Or change chemo regimens. Wish you luck...hoping Gemzar will start kicking butt.
Chelee
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Chelee, L have only been on the Gemzar since the end of Dec and have had 3 treatments of it so far, which I know is not really long enough to tell if it is doing anything or not, but with the Navelbine, my CA 27/29 went down dramatically within a month,.....unfortunately that was short lived. The only thing that has me worried now is that my strernum has been aching and that is where my mets started. You said the exact thing my onco said, this test is just a piece of the puzzlel....he always looks at everything before making a decision to change treatment. If we do change, I am hoping to try xeloda which is what the onco at MDA wanted to do, but my local onco chose Gemzar.
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As of Wed. when I had the test run they are 1,617. I figure he will say time for scans again when I see him a week from Wed.
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My cancer is entirely monitored by CA27.29, CAT Scans, Pulmonary Function Tests and bone scans. I've had cancer for 4 1/2 years and it has never shown up on a PET Scan (lobular). My numbers shot up to almost 3000 this week after coming off 2 years of Zeloda/Ixempra and the failure of my current chemo and my previous ONC's mistakes. In spite of these numbers, I generally feel pretty good and I'm out and about. I am now on my 3rd ONC at a University Hospital - she only treats Breast Cancer.
On the other hand, I have a friend that has been battling breast cancer for 17 years (3 recurrences in the breast). She is seriously ill right now and may not make it and her numbers are below 100. It's a mystery to me!
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NurseAnn....University where? I suppose every city has one, but when I saw that wondered if it might be here in Cincinnati? I see you are ER PR+....did they do all the aromatase inhibitors on you? I had great luck with those for years and the onco I consulted with at MDAnderson actually thought maybe they would work again since I had been off of them for awhile, but alas they did not so now I have been pretty much going from one chemo to another, getting whichever along with Xgeva (replaced my zometa). Since they did go down a little bit, I am hoping maybe they will now start a downward trend. Guess there is always that hope, but being as high as they are worries me, even if it doesn't my onco....my cell search remains zero and I find that odd. One of my best friends has lobular.....she's still new to the game and as of now is on tamoxifen and awaiting reconstruction. Thanks for your response....if you are feeling OK that counts for a lot in my opinion....I feel fine also and still work and do things as always. I am not going to request scans until I see him a week from Wed. Bonnie...even if there is something going on, I think often it takes 3 months for the new treatment to work...and that won't be til the end of March. One thing I still have going for me is that my cancer is very slow growing.
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Marybe:
I go to the University of Denver. I was on AI's for 2 years when they failed. The Onc put me on Faslodex alone even though many on this site warned against being on it alone. My numbers soared to 1500 and I almost died. It was my family doc (at my urging) that found that my bc had moved to my peritoneum - not uncommon for lobular. That was the end of the first Onc - one of the two most prominent in the city.
I was in the hospital for 8 days for the above event and had exploratory surgery and was re-biopsied. As I was being admitted, the ONC ordered another PET scan - still negative. I am still estrogen and progesterone positive but they are very much reduced.
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My wife's CA 27-29 readings... DX with single met to liver (4cm x 3cm) and 7mm IDC in breast. She had 9 cycles of TCH
8/3/2010: 657 (first reading, liver met SUP = 10.8)
9/15/2010: 263
11/22/2010: 40
12/13/2010: 26
1/3/2011: 25
1/24/2011: 26
2/14/2011: 30 (liver met gone: NED!)
3/7/2011: 110 -
SunDiego....Wow. I am totally impressed...the T? Taxol or Taxotere? The C...Cytoxin? I am Her2- so herceptin would not apply to me, but the others?...who knows?, I will, ask my onco. I will say my prayers for your wife and hope she continues to do well. Those are really wonderful results.
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She took Taxotere + Carboplatin
(now taking only Herceptin & Tamoxifen, and recently added 750 mg of Tykerb... no chemo agents).
Also she monitors CA 15-3 & CTC... both of which tend to move in correlation with the 27-29.
Hopefully we never need to know if the markers predict progression...
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I think I am going for the record. Today when they called me with the results they are up to 1,828!! When I saw the onco Wed. he said we would not do scans until April, but maybe he will move them up now. I still feel perfectly fine and look the picture of health.
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KristiFromFrance made it to over 3,000! That made my 46 [at that time] seem totally inconsequential. I think you have second place now.
Feeling fine is good, yes?
*susan*
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OK, big question....did Kristi's stay that high and is she doing OK. I know they are not the last word in diagnosis and some oncos don't even do the test, but way back when they used to be very accurate for me, they would go down and the tumors were shrinking....now he keeps telling me not to worry about them and I am thinking uuuuh, easy for you to say. Are they still doing the Sunday night chat?
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