How high is high for the CA27/29?
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She stayed above 3000 for three years. A secondary infection eventually got her when her body was too weakened from chemo. I will also mention that she had a very different version of this disease than the two of us.
*susan*
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Just got the results from Wed. CA 27/29....the nurse starts out with Gee, I don't know if I want to tell you this.....anyway, they are now 2,177. I have a CT, MRI and bone scan scheduled before my next appt with the onco a week from Wed. The MRI is of my brain because I asked the PA if if could do a test for alzheimer's.....I am not kidding you, I remember nothing, get confused at times driving and it's not that I want to have alzheimer's, and I do suppose it could be chemo in part, but if it's something I can do something about, I want to do it....like take aricept or something like my Uncle is on....but I was not wanting a MRI of my brain, that's for sure. If I have new tumors or progression I am betting it is in my hip area and sacrum because I am having a lot of discomfort there and get a tingling sensation and numbness from my hip to my knee so think something is pushing on a nerve. Sorry, I got a little carried away here when all I meant to post was my new tumor markers. I have now completed my 4 cycles of gemzar (two treatments = one cycle he told me) and that was what the onco wanted so we will just have to see what the scans show and then we will know just exactly how accurate my tumor markers are.
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Rats! This is clearly the wrong direction. I am so sorry to hear this.
*susan*
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Marybe... You're in my thoughts and prayers....
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Yikes, Marybe! Those are numbers nobody would want to hear. I hope they're not accurate or they can give you some treatment to bring them down pronto if they are! My Mother has been experiencing some confusion, too. She says she knows what she wants to say, but has trouble getting the right words out. It's worrying her so much that she's calling her doctor Monday. Maybe yours is just chemo brain, but best to get the MRI to put your mind at ease if that's all it is. I'd say that's what her's is except she's only on Faslodex right now....no chemo.
Peggy
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Sincerity, I am glad your mother is calling her doctor to have this checked..I had something called a TIA once and that was what my symptoms were....not to scare you, but thought I should mention it. Also, The hormonal depleting and blocking agents can cause problems with the thought process and concentration just as chemo can. Even if it is the enemy when you are ER+, we need our estrogen and miss it when it is supressed. I had no idea how much I would miss it. To all of you, thank you for your thoughts and good wishes and prayers. My tumor markers have always been quite accurate which I why I cannot understand my onco's not being overly concerned with the fact they have been going up up up ever since I have been on this Gemzar.
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Marybe, I am on Gemzar also. I started tmt in Sept 19th and my tumor markers have bounced around and stressed me out too. My onc said that Gemzar can cause them to fluctuate and if he see's a trend(continuous rising, then scans and after those results and it shows progression then new tmt plan.) my markers are very accurate in telling me I have progression. the first month, I did Gemzar-3 weeks on and 1 week recovery, my markers went down then in Oct they did not do anything, then in Nov they went up, in Dec one went up and one went down (do ca27/29 and ca15.3) In Jan they went up 20 pts each which if they continued would require scans, I was ill with an inner ear inbalance. In Feb they went down 17 pts each so I see the onc this coming Monday for my monthly appt and we will see what my markers are doing again. I hope this helps you somewhat. I am on 1600mg of Gemzar weekly and have completed 7 cycles. I have liver and bone mets. Hugs Dawn
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Thanks, Dawn. Mine have always been a very good indicator as to what it going on....they go up, then the next scans show progression. I am not sure why he is telling me not to worry this time. I do not know how much gemzar I am recieving, but I get it every two weeks and once a month I get xgeva which replaced the zometa I was on for years. I guess the real correlation will be known after I have my scans. I will say my prayers it is working for you.
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Thank you for the warning, Marybe. Is a TIA a Transient Ischemic Attack? I googled it and it says it's like a mini-stroke.
Peggy
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Yep, that's exactly what it is. I was at work one day and did not have a patient (am a hygienist) so was calling patients to remind them of appointments....I was on there and knew I was making no sense at all, and the poor woman on the other end of the phone was actually finishing sentences for me. When I hung up, I tried to get my thoughts together and told the receptionist I can't talk. I knew what I wanted to say, could see in my head what I wanted to say, but totally different words were coming out. My boss had me do that finger thing with touching your nose and sticking out my tongue, but I did not show any symptoms there so he had me call my onco's office and they sent me to the ER and I ended up staying in the hospital for a few days and they determined it was a TIA, but it did not do any real damage and today I am back to normal.....Well, as normal as I ever was I guess. But do mention that possibility to them. It was just the strangest sensation and I have had it happen twice.
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I can't begin to tell you how much I appreciate this heads up, Marybe!!! It may just be lack of estrogen, but my Mom has all the symptoms you describe. I was looking for signs of a stroke, but she doesn't have any of the other problems that would indicate a stroke. I never knew about a TIA. Again, thank you soooo much!!!
Peggy
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Marybe...
I'm sorry to hear this news about your tumor markers. You're an incredible trooper, and I wish you good luck with your scans. Hope it's just some freaky Gemzar thing or something else unrelated to cancer. My markers shoot up with the slightest inflammation or virus, and have been all over the board. Wishing you the best!
Rose.
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Well that's a good question and one I wish I could get some explaination from my Onoc doc to e to wrap my brain around while it still isn't too foggy !! A couple of weeks ago I got my CA 27.29 with a score of 40. Yes, I know that to most of you that's not high, but in my logical brain if it was only 31 before surgery & chemo then why the increase?? I have had all 6 of my Chemo Combos of Taxotere, Carboplatin and Herceptin. Now I am only on Herceptin to complete the 52 wks. plus have started the Arimadex. I feel like the Chemo must have failed, but no answers to questions from the doc either in the office or on the phone. I did have an Oncotype DX that came back with 100% chance of reoccurance w/o chemo that was to say devastating. I feel like stopping all tx, just enjoy life and wait for whatever my fate will be. It's in God's hands now. I wish you all the best.
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NormaJean, Have them run it again to see if it is continuing to go up.....sometimes you have have something called a tumor flare and I am not sure exactly what it is, but it is not necessarily a bad thing....I think it can mean the tumor is responding to treatment. And as my onco told me a long time ago, many things can affect the numbers and because of that it is not always an accurate test....stress, antibiotics, an infection, lots of things can be responsible. I would be jumping up and down if I had a score of 41, ...at this point I would be happy if they would go back to 1,000 but then again my situation is entriely different since I am Stage lV and know that in the past my CA 27/29 has been an accurate indicator for me, BUT at the same time I am hoping I am wrong and that maybe the scans will show no changes or better yet, that things are improving. When will you be getting scans again....they will tell you what is really going on. There is always a possibility it was higher than 41 sometime inbetween starting the chemo and when you finished it and maybe it is now going back down. Saying my prayers and have my fingers crossed for you.
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Thank you Marybe. I cannot express how silly and petty I feel after reading yours & others posts. Please keep us all posted on your tests. I will remember you in my prayers......You are a beautiful person inside & out along with being a great warrior.
If stress can effect the CA 27.29 then I will never have a reliable reading. I am one of those type "A" personalities that can't stop worrying & taking care of everyone else. My husband just finished his chemo for Hairy Cell Leukemia all of a 24/7 via a pump!! His WBC is now 4.0 on it's own w/o Neupogen. It gets really crazy in this house sometimes.
Onco doc says we don't have to do them (the test) anymore if I wish, but I met him "half way"..........I will do the test I just don't want to know what it is. If it becomes a critical situation then call my husband. I simply want to live in joy with no more slicing or dicing, poking or prodding, or scans of any kind. Maybe it's all too new & fresh for me to be a more compliant patient. I was feeling really good until this test. Even painted the trim on the house, planted the flower gardens and carried 40# bags of mulch which I couldn't have done in January. It's not that I am stuck in the negative mode, I guess I am just scared and angry at my doc for lack of info.
On my labs it shows anything <38 is acceptable.
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Oh NormaJean, you were not being petty at all, you were just being human. And as you said you are still new to this. Cancer is a scary thing.
I have always felt it really does not matter how long we have been doing this crap or what our diagnosis or stage is, we are all in the same boat and will be until they find a cure....so all we have to do is keep afloat until the do. Thanks to all of you for your good wishes and prayers.
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hear hear Marybe!
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TM's...not reliable for everyone but after a year and a half that is all my onc uses. I have mets in several bones and the bone marrow (which is highly unusual) so maybe that is why. The highest mine got was 1648 a few months ago. Hanging at 744 right now. He tells me he can tell what is going on by my marker and my symptoms. I have had a perfectly clear PET and then a CT not clear. It is all interesting to me! I've read where the marker is good when you are Stage IV but not reliable for diagnosis before that. My onc does use the number for determining changing chemo but doesn't change it the second the marker changes. It has to have a substantial change over a period of time. I love not having high scanxiety!!!
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I am going to ask exactly what he thinks my super high tumor markers (2,177) mean when I see him on Wed. My bone scan came back with a nice surprise since I was expecting the worst....no decrease, but also NO increase so they are saying Stable in the impression notes. CAT and MRI are tomorrow so if I get the same kind of report from those, I am just going to stop worrying about the CA 27/29.
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Marybe, I have monthly tumor markers and when mine rise after 2+ months then scans are ordered and if there is progression whether it is a new bone involvement or my liver mets are growing or a new progression elsewhere, my onc has changed my tmt because of my history, my tumor markers have risen steadily then progression shows on my scans. My onc wants to see a trend in the markers rising because like others have said, inflammation, illness, virus, stress can alter them. On Gemzar, mine have not followed the decline pattern, they keep bouncing all around and my onc said this happens with Gemzar. I just saw my onc's associate( which I dislike, his attitude is what I ay goes and you follow my guidelines) my markers were up again BUT I had a sinus infection and first time ever had a low grade temp right after chemo tmt for a few days. My last CT scan that was a baseline for the Gemzar tmt showed no changes in liver mets, no growth either but new bone involvement. I will probably have some new scans done soon. Hope you are able to resolve the marker issue and have the onc explain why he is not concerned about your markers being that high, and what he wants to do about them. It is your right to know.I have heard about tumor flare where the cancer is dying off and shedding a protein into the bloodstream and causing a rise in the markers. Good luck and big hug to you Dawn
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Thank you, Dawn, Good luck to you also. I really have no idea what the deal is with the tumor markers....they used to be very accurate for me....when they would go up, there would either be an increase in size of number of the tumors.When they went down the tumors shrunk. Aromasin took them all the way down to 18 and that is the lowest they ever were after we discovered my cancer had recurred. They have been going up ever since I got off the Abraxane which was almost two years ago. I was really expecting more bone mets since I have a lot of back problems lately and physical therapy is not helping as it usually does. My onco has never entirely based his decisions on treatment on the CA 27/29, but I am going to ask him why the numbers are so high. I will know for sure if the gemzar is or is not working after my tests tomorrow. My last bone scan ( and that would mean CT also) was in Sept 2010....I think the PET scan was after that (the lst and only one I ever had). I will let you all know what is going on after I see the onco on Wed. This onco has been taking care of me ever since I was diagnosed Stage lV in 1998 so I think he knows what he is doing even though I don't always understand his reasoning some of the time. What do you get for your bones? I changed to Xgeva from Zometa in Dec.
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Marybe, wishing you good luck this week ..... Paula
PS, My markers have gone up to about 1,000 since Stage 4. Had them go as low as 129 once, but scans were just stable. They've ricocheted up and down, often hundreds of points at a time, since March 2009.
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Marybe, I did Zometa IV for 2 1/2 years monthly for my bone mets but now do it every other month since my onc said there is no studies showing how long you can be on Zometa monthly and it is harsh to the kidneys. I had gone to a MBC conference in 2009 and met a air force general whom is a medical oncologist who started the studies for Zometa. She said that Zometa forms vacuoles of meds into the bones and is released slowly and you can have coverage up to 3 months. She was so smart and informative. She also does research for breast cancer and takes care of a lot of stage 4 women. She talked about ONJ and that it is rare unless you do not tell your dentist you are on it and you have dental surgery then your risks increase. I was on Aredia the old drug used for bone protection but reacted to it when my insurance changed and they had guidelines of what drugs are covered. I was put back on Zometa. I have heard about Xgeva but my insurance gives me problems with just delivering my chemo drugs on time. They are a special pharmacy but I believe that they are specially challenged pharmacy because they can't get my orders right, deliver my chemo to my house when they need to ship it to the infusion clinic, call me to tell me that my chemo drugs are on hold because they need to know if my zofran IV is a refill. Duh once they told me I cant give myself the zofran injection at home because my insurance doesn't cover injections. First I told them that the drug is not an injectable, it is an IV med and to call the infusion clinic and talk to the onc nurses. they really get me pissed off especially when my chemo isn't there and it was ordered 2 weeks ago and told that they had shipped it or it is on back order ect. I think Walgreen's special pharmacy must outsource their help...Dawn
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They must do things differently in MI....my drugs are right there at the onco's and they mix the stuff up in the lab for each patient.One time the truck that delivers the chemo drugs was late so everyone was all hooked up just sitting there waiting,but that doesn't happen often. I was on pamidromate) I think the lst two years. I know all about osteonecrosis because I am a dental hygienist. So far my kidneys are fine....even all my liver enzymes and the liver function tests are all normal in spite of the tumors I have there. It sounds as if you are well informed about your drugs and treatment and that is a good thing.
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Marybe, Good luck with your scan tomorrow and hope it is great news like Ned or Reggie. That is great news about your liver levels, mine are chronically high, part is due to liver mets, inflammation and chemo and bone involvement. I use to always have my chemo drugs at the infusion clinic but when my insurance changed then the onc nurses have to special order my drugs from this pharmacy crazy place since it has to be paid for first per my insurance plan. I hate that they dictate your care and the quality of your care. My chemo is around $18,000 a month. I have my 2nd chemo tmt in this cycle tomorrow morning and then I have to get my lovely neulasta injection for my low white count on Tuesday. This is the time I need my vicodin due to bone pain and nasty headaches from the shot. Have you ever had to take epogen or procrit or arenesp for low HGB/ RBC's? Those shots scare me with their SE's and so my HGB has stayed around 10.3 or higher and tmt is below 10. I scared my HGb up....haha. Have a great night and enjoy your berry smoothie tomorrow.....hugs Dawn
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Marybe,
I went to the female onco dr today with a much better understanding, and new info that I had never been told about the Oncotype test, chemo & the aromatase inhibitors. WOW !!
The CA27.29 numbers have a reputation for "bouncing around" after have chemo. It is only when they see a spike or steady incline of the numbers when they become concerned.
She also clarified the percentages of my Oncotype DX test in a more understandable way. When all is said and done when I complete the entire of the tx program I will only stand a 10% chance of a recurrence any where.
Also, she switched my Arimadex to Femara b/c of the SE & states her experience is it has fewer SE. The onc was willing to explain, listen and most importantly answer questions. Also told me that the aromatase inhibitors were more critical in the tx plan than the chemo. The Chemo is only a part & while important, it is not as crucial in "fending off" the CA as the aromatase inhibitors.
How was your test on Weds. ?? Have had you in my prayers.
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Sorry, I have not checked in here....write so many different places it is hard to keep track. My tests Wed were not good. lst of all I had a terrible time with the MRI....had three different techs trying to find a vein and finally after seven tries I think it was, they gave up so I only had the test pics done without contrast. My hand was swollen when I left because with one stick they inflitrated into my tissue. I have bandaids all over the place and was bruised.....not fun. The results of the CAT scan showed not only increased growth in the existing tumors in the liver, but I also have a bunch of new ones.....and the MRI showed a solitary sclerotic metastasis in the skull. The onco is not too worried about it since he said that is just another bone mets and those seem to be stable so there is no reason to think this isn't stable also, BUT the liver is another story.....he says we are about to begin a new chapter and it's going to be a different ballgame. I don't like the sounds of that, but what he means is that maybe treatments and cancer are going to effect my life more than they have been. I am going to start Halaven on May 4. He said we will check to see if it's working after two sessions (two weeks on, one week off...I will get it once a week) so that will be six weeks. I asked how? and he said with the CA 27/29 to see if it goes down. Go Figure!!! SEs with this one are nausea, hair loss, fatique and constipation and possible neuropathy. I have already decided I do not want to do wigs again and am just going to do bandannas and scarves. Onco is once again suggesting I do SS disability, but I am going to try to keep working for awhile since I think it is good therapy.
China I did have those shots before...Nuprogen.... and he told me I will be getting it again with this one since it usually knocks the white count way down....or maybe it is neulastin, I forget.
NormaJean, Thanks for the prayers....I can always use those. In my opinion AIs are really a good method of treatment when you are ER positive. I did them all and they really worked for me and were the only thing that really put me into remission.
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Marybe....CRAPOOLA big time, I am sorry to hear about your progression, I have to have scans soon too and this past month my tumor markers are up and if they rise again,crap for me because my markers are very accurate in telling me progression but Gemzar does bounce them around every other month. I went on SSD and it helps somewhat but cannot replace a nursing check. if you get the neulasta, that shot can cause nasty bone pain and I had a nasty headache for 3 days.I wish you luck in your chemo tmt and that it kicks some cancer butt. I am getting a 2nd opinion from a new onc since mine is off on medical and I dislike his associate whom believes no tmt if I am stable, a chemo holiday for 3 months with no appts, dr visit, blood work...Duh how stupid is that, this requires close monitoring if I am not mistaken. He told me he knows what he is doing and has been doing it a long time. I wonder if he doesn't want to deal with my onc's patients that are high risk/very involved tmts and is overloaded. Out of sight for 3 months sounds really convenient for him and it is unethical if he thinks that. Hugs Marybe. My prayers are with you. Dawn
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Dawn, While I would be thrilled to get a break from treatment, I agree they should be doing something, Faslodex or some AIs if they still work for you or at the very least something for the bones since you did have the bone mets. Stage lV needs to have some sort of treatment even if we get to remission . I think you are smart in getting that second opinion.
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Hi Marybe,
SO sorry to read your Cat results. I am sending you a PM. Please know you are in my thoughts and prayers, hope the new chemo works wonders. Hang in there, Girl!
Judie0
