How high is high for the CA27/29?
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((((Marybe)))))
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Mine went from 283 - 123 - to now 57 but that is just for what is internally, there is no TM test for the bones so don't know what is going on there, awaiting the written report, dr. called with the results yesterday but I want to see what is written, he has missed stuff before.
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Blondie, I always go pick up the scan reports a day or so after....like to know what they saw and want to make sure the onco isn't skimming over anything when I see him to discuss the reports. They usually ask if I want the disc also which I don't since I cant make heads or tails out of those, but I can read a report. If it worked on the organs, and your numbers went down I would guess the bone mets are at least stable. It takes years and years to see any improvement in your bones....heck, if you break a bone the fracture line still shows up for years....but if they at least don't see progression, that will be good. I know I have gotten to the point where I don't worry so much about my bones even though I hate it when they tell me I have a new met.....I figure the bones might give me some discomfort and pain, but as long as we can keep that under control, they aren't going to kill me. Now, my liver, that's a different story and I worry about it a lot....largest tumor was 7.9 centimeters last scan so I have no idea what it will be this time. Will you be having a bone scan?
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I hope your scans on Monday tell a better story than your tumor markers.
Sending you hugs and lots of good thoughts.
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And to think I thought 4,181 was high.....just got the results from having the CA 27/29 done on Wed. when I was in there for my Xgeva shot and they are now up to 6,444.3!!!! I just can't believe they went up 2000 points in a month......oh, I can, but shouldn't I be feeling ill? I am going to call back and ask about my liver function....they were supposed to be checking that also. Just think if I had not asked to have the CA 27.29 done this time, they weren't even going to do it and they could have been up to 10,000 by the time we did it again. Am I in a panic?.....not exactly, but let's put it this way, I wanted to wait until after the holidays to start any new treatments, but now I am wondering if I dare. I think maybe the cancer is now going wild....making up for all those years it was slow growing.
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Sending positive and calming thoughts, Marybe. I wonder if switching back to Zometa might help the situation any?
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Thanks,Heidi.....I am not exactly running around pulling my hair out (heck no, it's just filling in), but I am needless to say thinking I have to do something and it is probably not going to be pleasant. I called my onco's office back and asked about the liver function test and she said it's still normal....How can this be? And then I fired off an email to the onco at MDA telling him what the CA 27.29 was, but with my luck he's probably off today. The reason they had called me to begin with was to tell me they had gotten all my info (this is the 2nd try....lst time he said it was all ancient history that he already had) sent this morning....so he hasn't even had time to study it.....and then I of course had to ask is my CA 27.29 back? You think the zometa would make a difference over the Xeloda? I was on Zometa for years, but think they said there is less risk of osteonecrosis with Xgeva plus it's just a simple little injection. I just don't know what to think.
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Oh, man, you must be a poster child for TMs not being much help! I mean, you feel good, your liver functions are good. Surely the TMs are just wacky crazy for you. I'm glad you're not pulling your hair out. I hope you get some decent feedback from the docs as to what's going on. Are you still doing Xeloda?
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Oh Marybe...so hard not to let all your thoughts run wild! Sending you a big hug...I hope the doctors get back to you soon so you can settle down.
Robin
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Gee Marybe...When you FINALLY get through to these doctors...ask them if they can set up a case manager to help you. Since things are getting so complex for you and you're getting information in dribs and drabs, which must be so frightening and irritating, can't you at least ask both doctors for a "go to" person who can help you? Perhaps you need someone who will keep those reams of information together and handy for the doctor. You shouldn't need to wait a minute longer than necessary to get any of your questions answered. Do you have a physician assistant assigned to you? My doctor's physician assistant asks that you leave a detailed message so when she returns your call, she will already have an answer. Hopefully, a "go to" person will ease your anxiety and help get you on your path to recovery...faster. The DH recently had a heart procedure and the doctor gave us a "manager" who was terrific. Perhaps that might work for you as well.
My thoughts and prayers to you....
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Hi Marybe
As a fellow Xeloda Diva I have followed your posts and like others I wish you well on this crazy cancer continuum. You said in one post that you had had a blood test done that revealed the cancer had changed to HER2+. I have also been wondering if there was a simple test to show this change as I only have a bone met left to biopsy and something within me says, let it be, don't mess with it. Thank you for this information, I'll ask for it at my next treatment team meeting.
With love from Australia
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My oncologist told me my liver function would not necessarily be affected. Probably not what you wanted to hear.
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If it gets in the right place (or I should say wrong) in my liver, the liver enzymes would shoot up and I would get jaundiced......I know this from my friend who has it in her liver. The tumor, the largest one is about 3 inches in width, but it's not by the duct......right lobe I think, but I can't swear to that. I was perfectly happy to be doing nothing for awhile, but with this big jump in numbers, I am getting nervous. And Joy, re the HER2+.....I myself do not think the elevation they noted in whatever that test was that they did (they can determine it two ways, blood test or biopsy of a tumor) was high enough to really make me Her2+.....think we were sort of grasping straws, but I do know it is possible for the tumor to change from one status to another....it would not hurt to ask about doing the blood test. Hope the Xeloda works for you.....I tolerated it quite well.
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Oh Marybe, this is just crazy having your markers so high and very scary. I am sorry to hear that they are still climbing. I hope you find some answers soon. Wishing you a heartfelt hug to make your day better. I go next week for my TM and am starting to worry since this past month I have had muscle spasms in my back with movement sometimes. Dawn
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Marybe:
I too am so sorry to hear that you numbers are climbing. I'm stoked to hear that your liver enzymes are ok. If it helps at all, my CA 15-3 was through the roof, but I had REGRESSION. So, I don't know how reliable tm's are? Have they been reliable for you in the past?Hugs,
KIm
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{{{{{Marybe}}}}}
Praying for you tonight.
~lulubee
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Marybe, radiant has a point. This could be the storm before the lull of regression!
xgeva has a different mechanism of action from zometa. Your body is reacting in a different way. It probably is silly to change back just to see what happens. Forget I said anything. Just grabbing at straws. Hope you get some real answers soon!!
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Mary, have you looked into SIRT spheres? Take a look at beatlivertumors.org. Might be something to consider. If you call the phone number, a lady named Suzanne, a long time colon ca survivor with liver mets will talk to you. Real nice lady. Good luck.
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Thanks, mk, I will check it out. That would be nice if this was the storm before the lull, but I think it is probably the other way around since with me tumor markers have always been quite accurate....they go up and sure enough we will see progression in the scans. I just had the scans in Oct. so surely there can't be much change since then....at least I hope not.
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I called this afternoon for the results of the CA 27.29 which was done on Wed. when I started the adriamycin ( I am posting about it on a thread I started Between the devil and the deep blue sea) and they are now 7,444.....I find this rather odd since it's an even 1,000 more....last time they were 6,444.3.....even the nurse commented on this. I was expecting them to be at least 7,000 so am not shocked and am glad I am on a treatment and no longer just in limbo.0
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Holy cow!
My CA27.29 is rising too - at an alarming rate. While discussing it with my oncologist I told him it was nothing compared to yours. His eyes got huge when I told him your last count. I hope you don't mind - I just think of you often and hope for the best for you.0 -
Oh, I don't mind at all Chele, I think I truly am going for a record and the odd thing is they have nothing to do at all with how I feel.....am still feeling just fine in spite of the liver and other problems going on. I tell the nurses voicemail when I call, Now don't be afraid to tell me because I am betting 6,000 or 7,000 or whatever they were close to at that time. I only do this because one time when I actually spoke to the nurse she was very apologetic in telling me what they were, afraid I would flip out or something.
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Marybe, I am hoping the Adriamycin kicks your cancers a$$. Hang in there. I am betting your TM's will begin going into a free-fall.
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I told him you felt fine and were still workimng - he just shook his head in amazement - then informed me he didn't want to see mine get that high! LOL I too feel just fine. Except this past week. But today I'm back to full steam ahead. This is one weird damn disease.
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7,668 point something was the result of the Dec.28, CA 27/29 Sounds awful I know, BUT at least it did not jump 1000 this time so I am hoping that maybe the Adriamycin is slowing the progress down. Will post results again in about a month. I am hoping yours never get to anywhere close to where mine are Chele. I am doing fine in spite of the #s, but it does make me a bit nervous, especially since they have always been an accurate indicator for me.0
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Oh dear Marybe, that's so high. It's the bad thing from 2011, Good luck to you in 2012.
I read your post since I joined in, but my English is not good, so I didn't post a lot. You a so breave and your word encouraging me. Hope Adriamycin work for you.
Pbsom
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Thank you, Pbsom, Your English is just fine. I am hoping 2012 is a good year for all of us.
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Marybe... How DO you DO it?? You amaze me, and all of us, with your strength AND dignity and HOPE!
I'm wishing you a glorious New Year and many New Years ahead!
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A slow down is GOOD Marybe! Would love to see your numbers go down, but we'll take what we can get, right? Mine went down 10 whole points, from 1008 to 998. I'll take it. It's so weird for me to read women post numbers in the 40's - and they have mets. Only thing I've learned is that nothing about cancer makes any sense.
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OK, Marybe... NEXT time they go down.
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