How high is high for the CA27/29?
Comments
-
I called yesterday to find out what the CA 27/29 results were since he was running them as a starting point when I got my lst halaven treatment. The nurse calls me back and goes Hmmm, let's see, I know it is here somewhere. Sorry, I should have looked for it before calling you back, but I know it is here and then she says Let me put you on hold for a minute. She comes back and says I am going to have to call you back as I don't understand this....it says Final, but I don't see the results anywhere. An hour later she calls back and said it seems THEY DIDN"T RUN IT!!....it was ordered, but they did not do the test! She was pretty sure they keep the blood for 7 days so she was going to see if they could still do it so we would have a number pre-Halaven and if not I guess we will just have to go on the 2,177 from a month ago. This really pisses me off. Maybe it is no big deal to them, but it's a BIG deal to me! I am betting they would be at least 2,500 by now.
0 -
Oh, Marybe, how frustrating! If they don't do the test on the sample they already have, is there any way you can get a sample taken before the chemo even if you don't get the answers before it?
Best of luck.
Leah
0 -
The problem is we already started it Wed.....they did my blood draw before the treatment so we would have a base line....they could run one this week and I am sure it would probably be too soon for the havalan to have done anything one way or the other to the cancer cells, BUT it won't be as accurate a starting point as if we had it from last week.
I really like the nurse I was talking to on the phone, but someone actually should talk to her about her manner since I am sure she could get fired for being as compasionate as she is....think you need to be sort of hardnosed and professional for this field, but she was saying oh my word, I can't believe they forgot to run it, surely they couldn't have made a mistake like this. She's the same one who one time when I called for my results said Gee, I really don't know if I want to be telling you this, but I told her it was OK, that I already knew they were going to be high since that has been my trend lately.
My best hope if that if they really do keep the blood samples for 7 days, they can still run the test. The outcome of this particular blood test is going to have no relationship on my getting treatments since he said he wants to do two cycles ( 2 two weeks on and one week off) before doing any testing.
0 -
Well, they did have blood still from Wed. so ran it.....I am breaking my own record. 2,709. I told the girl who gave me the results, well, I guess it is a good thing we have started a new treatment!!
0 -
Marybe, I am sorry your markers are so high. Could the test be accurate if the blood was not stored properly or have a breakdown of the blood cells since it was from a while back? My Ca 27/29 has been around 250 but when I was first diagnosed I think they were in the high 300's. Don't know for sure since I was hospitalized and on lots of pain meds. I have had a time where my tumor markers were not ran and it was to confirm possible progression which hindered me changing tmt because my onc wanted to see a trend not just one high increase and then I had the cancer pain and scans showed progression. Still doing chemo 1 yr and 3 months ever week for 3 weeks and am waiting for current scan results from last thursday from my 2nd opinion dr who called me after I had left for chemo tmt today since he never called me on friday to see if I needed to still do chemo based on those scans so I made the decision and went . I will be praying for you that this tmt goes well and you get to see reggie or ned soon. I lost their phone numbers....hehe.love Dawn HUGS PS Today I was my own advocate and pissed off 2 oncs.......my crazy associate and the 2nd opinion dr. hey its my body......
0 -
Thanks for trying to be encouraging,China, but I am pretty sure they are correct....the last time they were 2,177 and I was betting they would be maybe 2,500, but I outdid myself. However, now that I am on halaven, I am hoping they start coming down. I will be praying your scans showed good things. It's Ok to piss the docs off, after all it is not only our body they are dealing with, but our life and they certainly are making a lot of money off of us.
0 -
Hi Marybe Sorry to hear your levels are so high. Hope your treatment works and those markers go back down for you.
0 -
Marybe...........
I am so sorry to read about your tests & what is going on. Just know you will remain in our thoughts & prayers.
Maybe this will put a smile on your face. Thursday went to see onco doc for the results of the blood work with including the CEA & CA27.29..........grrrrr! I tried not to get to worked up since I had brought my own envelope to put my copy in. Doc said I know you don's want to know but just the same I will say everything is okay.
Well, that comment bated me just enough that after a few hours at home, I cheated & opened the dang envelope. CEA 1.2 and the CA 17.29 was 34. Still don't want to get too excited as learned here that they do bounce around for a while.
0 -
Marybe,
Sorry those tumor markers are so very high. I do hope the Halaven will start to bring this cancer back under good control. I am thinking of you and you are also in my prayers.
Judie0 -
Hi Judie, How are things back in CA? Oh and NormaJean....34 is good. I would never be able to not open something if I had it right there in my hand....am just too curious.
0 -
Marybe......
I think the doc did that on purpose by telling me all was good. Big Stinker !!! You were so much help when I found this forum to try to make some sense out of this CA27.29. Thank you for giving so much not only to me but others.
0 -
I have completed two cycles of havalen (2 wks on, 1 week off) and have done week one of the 3rd cycle. My onco had them run the CA27.29 last week when I got my treatment and I was very disappointed when I called to get the results. We started at 2,709 and now the number is 2,635. Yes, they went down and I know I should be happy about that, BUT it seems like others have had much more dramatic results on halaven and also they certainly were going up at a much more rapid rate than they seem to be going down. Trying to think positive, but as I said I am disappointed. In general the SEs are not bad so I would not mind staying on this one.....but we have to find out if it is working and won't know that until it is scan time.
0 -
Marybe,
Oh I bet that you are disappointed! Yes, down is better than up, but I know you wanted more. At least the SE's aren't knocking you back. When do the scans come up? Do you stay on the havalen until the scans are ordered?
Wish you were feeling more positive, and that those pesky numbers had slid farther down.
*susan*
0 -
Marybe.....
I think being disappointed might be a slight understatement. I am sorry, you are such a sweet, warm person that this all seems very unfair. Yes, susan is right, down is better than up. It doesn't matter how much, it still isn't what any of us want to hear. Will continue to remember you in my prayers & sending you lots of sunshine, good cheer and nothing but good news next time around.
Norma Jean
0 -
Marybe, this could mean it is killing the cancer big-time. I know Taxotere releases cancer cells from the tumor in mega-droves. Halaven probably does the same thing. Now in the next rounds it will sweep up those stray cells. Hold that thought in your mind. You can do it (if anyone of us can)!
0 -
Marybe, yeah, what Heidi said!!
0 -
Hi Marybe,
I am also sorry the damn numbers are not lower, but maybe it will take more time to really come down? What does your doc think? Hopefully when scan time comes around you will see some improvement. I am praying for you, Marybe and hoping so much the miserable beast will respond to the Havalen.
Judie0 -
Marybe, I hope your scans find you with good news despite those damn tumor markers not cooperating. My markers bounced around while on Gemzar or did not even drop and were elevated again but my scan showed stability. Hope it is due to tumor flare where the markers are rising because of the cells dying and shedding the protien that these markers release. I am glad they came down some, when I was first diagnosed, it took over 6 months to see an improvement in my markers. They still act up and give me grey hair. Good luck sweetie and hope your scans are good. Prayer for great results. A fellow "hate those damn CA15.3/27.29 markers!!!!" Hugs Dawn
0 -
Thank you all for your nice posts and encouragement. I know it isn't the end of the world, but I was just hoping for a more dramatic drop, like at least several hundred. My onco has not said anything because I have not seen him and won't until Wed.....sometimes I don't think he even looks at my chart until he is in the exam room with me. I know the blood tests are not conclusive and that you have to put everything together , blood work, scans, liver function (in my case) .....need to look at it all, but even after all these years I worry and do put emphasis on tests that are "non conclusive" in my onco's opinion. All I know for sure is that they are way too high.
0 -
Hi, Marybe. Maybe it just takes some more time for the TMs to drop with this new chemo. At least they're going in the right direction. I know you were hoping for more, but each individual is different. Your body might just respond slower. It doesn't mean the TMs won't continue to drop. I hope the results get better and better.
Peggy
0 -
It is now up to 3.173.9......I told the nurse MAKE SURE HE SEES IT. I will still be having my bone scan tomorrow and CAT on Monday,but most definitely do not take this as a good sign. I honestly don't know if I should start looking for a new onco or what, but we have been on a downhill roll it seems.
0 -
Marybe I am so sorry this is happening to you right now. That's an alarming number. Just know I am with you on the bone scan tomorrow and the CAT scan on Monday. If you visit with your onc isn't to your satisfaction then you should change.
0 -
Yikes, Marybe, that is high!
Sorry the TMs went north again. Is there some way you can get in your onc's face today or are you forced to wait until the scans are done? You know he's probably going to change treatment, and the sooner the better. I'm hoping he can come up with some answers for you and soon.Peggy
0 -
Sending you my thoughts, prayers, some more prayers, a couple of hugs and my hope that the doctor has a game plan soon!
0 -
So sorry to hear of those numbers Marybe. I know that you have felt that your Onc has had your back for years and it seems he has. Maybe it's time for another talk with your MDA onc. I'm sure you've already thought of calling for a consult.
In 2 years I've only just now had my tumor markers tested and they used the CA15-3 test. At least it is only 24, right inside the normal.
Wishing you normal or at least a significant DROP. DIE BEAST, DIE!
My new mantra.
0 -
Well, I honestly feel like I am going for a record here, although I know one woman who had them in the 6,000s and it seems I am headed for that. The results of the CA 27.29 I had run Tues are 4,181.9 !!!! So I told the nurse I may as well stop the Xeloda and guess this means herceptin is not doing anything either even though my tumor status changed from - to + and we thought maybe adding it would help, but guess not. So the big question...where to from here.....on to some treatment that is going to make me feel like shit....I just don't know what to do. They are getting me in for scans ASAP.0
-
have you had your tumor rebiopsied? I think I would just to make sure it hasn't changed. I hear that they can.
0 -
Dang it, Marybe! Are you feeling ok? I hope your scans don't reflect the marker number. Lets hope whatever you have to go on treats you gently.
Peggy
0 -
Soooo sorry to hear that. I follow your posts very closely and wish you the best. You are very inspiring.
0 -
Well, thank you all.....I do not try to be inspiring, just try to keep going. The nurse today gave me a hug after giving me the bad news and seeing the tears welling up in my eyes ( I was expecting bad news because I just really was not having SEs like others do with the Xeloda, but that didn't mean I wasn't hoping I was wrong) and said You've been through so much. So I told her I really haven't and I believe that....compared to others I have not been through that much, am extremely fortunate that only a few treatments have hit me hard.....and that is really how I feel.....but I am happy that I give others hope because we all need that. I have been doing this a long time, but it has not been all that bad.
How do I feel?.....I feel fine, that's the weird part of it, I feel fine. Actually I feel better than I have for a long time. Just got back from vacation last Sat and everyone is telling me how good I look and I am sure it is because I got a lot of rest, plus my hair is growing....all the places I had pink scalp have filled in and I am so happy to have hair.....a petty thing, but I just hate the thought of losing it again so soon. I had a packed schedule yesterday and kept right on schedule and one not the least bit tired or dragging the way I sometimes get at the end of the day. I did have a pain last night in the region I think my liver is in, but that's a lst and it did not last for that long, but I did tell the nurse about it today.
Having my tumor retested.....well, they did that blood test several months ago and that was when they found some cells had elevated and said I was now HER2+.....which in some cases is a bad thing, but in my case was sort of good because it meant another treatment option so we started herceptin. But it doesn't seem to have made much difference.
They set up my CAT for the 21st and I just called and rescheduled it for Monday at 6:45 AM....that means I have to start drinking crap at 5:15, but that's OK, I want to find out what is going on in my liver. The bone scan can wait, but I hope to get that scheduled next week also.
Thanks for your support ladies.....I don't know what I would do without these boards.....I have not even told my freinds here at home and don't think I want to.....it's easier for me to type about this than talk.....plus you all know where I am coming from.
0
