Tumor markers elevated, a little worried right now.
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Good luck Linnyhop!
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Hello everyone! I am seeking opinions as to my next move; feel free to say anything. At the end of January I had a 27.29 drawn. It came back at 53. I had not been sick and asthma in control (on inhaled steroids and inflammatory suppressants) and nothing else happening, Saw my MO yesterday. She said that she was not overly concerned as some of her patients run high. She also said that any treatment for recurrence would, in my case, be extremely difficult, if not impossible d/t severe complications the first time. Then she said 'because of the increasing high level, it does warrant follow-up testing, and did I want to know?' Said yes, I would like to know, but do not wish further treatment. With that, she asked what do I want. My choices are a PET, PET-CT, bone scan or MRI to a specific area. I have been having low back, bilateral hip aching that is worse at night (requiring changing positions at least every 2 hours) and some generalized discomfort that I can't pinpoint in right lower rib area. If I have the CT it will be without contrast as I am allergic to betadine (iodine variant). I had a PET at original dx. I'm really stuck, any advice is appreciated!
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Moni ~ I am sorry that you have to deal with the testing. My markers were slightly elevated last August and my MO ordered a PET scan which showed that I was NED. If you have read any of my earlier posts, you can see that I have been putting off my 6 month blood tests. My MO said that if the markers were elevated again (I don't know if he meant higher than in August or just higher in general), he would order a CAT scan and a bone scan. I asked him why it would be a CAT scan instead of another PET scan and he said that the CAT scan is clearer and the a PET scan can be a little "fuzzy." I don't know if that info is of any help to you, but thought I would share what I have been told.
Well, everyone, I have scheduled my blood tests for Wednesday, March 18th. I am so scared of what the results might be. I will let you know what I find out. I hate cancer!
I hope you all have a great weekend. It's going to be in the 90's here over the weekend. Yuck! Spring is my favorite season and I just want some spring weather...lol!
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Linnyhopp, thanks for replying! I was hoping you would. I totally understand the procrastination! I put mine off for over a year! Now the conundrum. Did you have a PET/CT or straight PET? Is this a full body CT? So diifcult!
Ahhh......spring right into summer! We are not as warm as you, but 80 projected for tomorrow (Placerville,Ca).
I'll join you in hating cancer!
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Moni ~ I believe the PET scan I had was from the neck down to my knees. Does that make sense? I am glad that I am not the only procrastinator. I honestly thought I might wait until summer to have the TM's done again, but with much persuasion from my husband, friends, family, and my BC.org buddies, I have come to realize it's probably not prudent to put it off. I am trying to convince myself that "it is what it is" but I am not very good at that. By the way, it looks like our stats are very much the same. I am sorry you had severe reactions to treatment. Were they so bad that you would not do any further treatment at all? It's certainly a very personal decision. I hope neither of us will have to make those decisions. I know you are having a lot of pain, but I am not sure if that's a definite indication of progression, as I have read many times (on this site) of people who felt perfectly fine and did have progression. It's such a sneaky disease and I am glad you join me in HATING CANCER! On a brighter note...have a great weekend in Placerville. You are having my weather...what's with that...lol!?
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HI Linnyhopp- Yes, that would be the standard range of scanning, but it is an option to have a PET/CT (concurrently) or a PET alone. Just wondering if you knew. Yes, I could not complete the chemo, only rec'd 1.5 AC tx's and 1 taxotere. Was in the hospital each time. Only had 12 Herceptin tx's widely spaced as we would start and then would have a bad reaction and have to stop. Even tried rapid desensitization and failed.
Yes, it is lovely here, but a bit early! I too wanted some spring weather. Already very dry. My son is at Camp Pendleton this month and is very much enjoying the beach! Have a great weekend!
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Linnyhopp- I so totally understand the TM issue. I also thought of them as 'piece of mind'. No big deal, get them done (MO wants them), but now it opens up a whole new game! maybe being an ostrich is a good idea! Lol.
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Linny, good luck next week. Try not to worry, as it doesn't change things. And believe me, I have to tell myself that all the time. Hopefully you won't have to wait long for results. My onc gives me results after just 2 days.
Moni, I'm sorry you are struggling with this. My onc told me the same thing, they don't always mean anything. Well, in my case they DID. Scans involve radiation, so I didn't like that, labs are easy peasy, as long as your insurance covers them, as they are quite expensive. Please read back a few pages. YOU have to be comfortable with your decision. I would say go, especially since you were unable to finish treatment. ER/PR positive is popular in spreading the bones, brain, liver and lungs. Quite happy in our hips, with mets to the bones. That is where mine is. My scans were usually stable and it was my persistence on the TM's that eventually proved my mets. Had I not insisted on more testing, I probably would just be going in for check ups every 6 months. Labs or scans are not going to prevent you from getting cancer again, it will only detect it and offer earlier treatment.
Good luck and keep us posted.
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Goldie0827, thank you so much for replying! I went back and read your earlier posts. So sorry your tumor markers were correct, but at least you found them early, which is why we do this, I guess! I have not had a PET since originally dx'd, and if I was not having these weird pains, I'd probably just let it go. I am going to repeat the 27.29 next week and go from there. I know my MO wants the scan regardless as there have been elevations, so I guess I will go for a PET/CT. I figure that will be the most thorough and hopefully be done with it.
Have a great weekend everyone and enjoy the spring weather ( on the west coast!).
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Dear Moni, welcome here to this wonderful forum and group of ladies! I am so sorry for your anxiety and worry!! I have been on the roller coaster of TM testing!! Mine are up and down!! I have had all the scans, and so far OK, but I have them tested again in May! Please come here and vent! Goldie and Linda have wonderful advice!! Linda, I will be praying for you on the 18th!! Goldie, how are you feeling
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Kindergarten- Thank you for your message. I have seen quite a few of your postings and am always keen to follow you!
I am actually not worried, anxious or even angry. I was just curious as to the type of scan I should have and what others have done. I have read up on all the info and will opt for a PET/CT if they are still high. If they are in the normal range, I opt for nothing. It is what it is, and I am at peace with that. Because of my experience the first time, I have always had the 'not if, but when' philosophy. My MO gave me the odds of around 35% recurrence rate; high I know. I am retesting the TM's later this week when I have time. So we'll see.
Best of wishes to all in my shoes and low numbers for all!
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Hi girls,
Kathy, I do not like this new treatment of Xeloda. I think I'm having an allergic reaction to it, even though my onc has cut my pills from 7 to 4. I have a very sensitive, itchy rash on my chest and back. And I think I might be getting a little bit of neuropathy in my hands, as I have a little bit of tingling on occasion.
Moni, both TM and scans can give false positives and false negatives! Like I said, my scans would show stable, but TM's rising. Kind of like we are damned if we do, and damned if we don't!
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Dear Goldie, so sorry that you are having a bad reaction to Xeloda! Will your Onc keep you on it, if you keep having these side effects? You are in my thoughts and prayers! Insure you feel better soon! I still have neuropathy in my feet from the Taxotere I took!
Moni, please keep,us posted on your TM testing!! You as well, Linda!!!
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Thanks to all of you for your encouragement and good wishes.
Moni ~ Thanks for your input because I did not know that i could request both a PET and a CAT scan. Now that my MO is leaving, I am going to be seeing another MO. She is young and female and I actually met her when one of my friends asked me to go with her to an appointment with the doctor who will now be my doctor as well. I checked out the new MO's credentials and I know her training may not be as extensive as my current MO. I have decided that I feel at all uneasy, I will make a change. My friend likes her a lot and I hope I like (and trust) her when I see her. I am so sorry that you had such a rotten time with chemo and herceptin. I am curious...did your MO give you the 35% odds of a recurrence due to the fact that you were unable to tolerate the treatments? I can't even imagine what you went through.
Goldie ~ I totally get what you are saying. This whole thing we have to deal with seems like a crap shoot at times. I try to be positive, and then another test comes around and I find myself going to the dark side. I hate it. I am sorry you seem to be having a reaction to your treatment. I hope your doctor can get your drugs balanced out so you can get rid of the rash and still see positive results. i hope you don't have neuropathy. I developed it after my final chemo. My feet are affected and so are my fingertips. Needless to say, I can't wear any really cute shoes anymore and I have had to refrain from wearing the 6 inch stilettos...lol! Believe me when I say that me in stilettos would be a quite a sight...lol!
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Kindergarten ~ Thanks for your positive thoughts. I am going to have the blood tests done on Wednesday and then the worrying begins in earnest. As Goldie said, it doesn't change anything, but I still dread it terribly. I didn't know that you had neuropathy. It sure isn't fun. Sometimes I wish I could remember how it was before all of this drama started, and then I remind myself I am blessed in so many ways. My husband is scheduled for his other knee replacement on April 2nd. I will be off work for spring break, so I know what I will be doing...just call me Nurse Nancy! I will definitely keep all of you posted. This is truly the one place where people understand exactly what I am saying. Take care and I hope you are feeling well and enjoying those grandkids!
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Hi, Linda, prayers for your husband's surgery and for you, too, Nurse Nancy😉 Good luck on Wednesday, I will be in your pocket with lots of prayers!!! You too, Moni!!!!
Loving my grandkids! Happy St Pstrick's Day🍀😃🍀😃🍀 love and hugs to you all!!!
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Kindergarten ~ Thanks for the prayers. I just told my husband I might wait to do the blood tests and he convinced me (with a look) that I need to get it over with. I will reach in my pocket for you tomorrow and while I am waiting for the results. Thanks for being such a wonderful friend.
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Linnyhopp- The PET/CT is a concurrent test, so no re-scanning. Yes, the 35% recurrence rate is due to not being able to finish chemo, Herceptin, no rads or AI/tam. It would be higher, but the small amount of chemo and H led to a pCR at surgery. MO jokes that she almost killed me, but at least she got the cancer! Yeah..... Re-did the TM's and other stuff today. Should have results on Friday. In your pocket tomorrow and while we wait.
Goldie- So sorry about the SE's. I do hope that your onc can find an answer. If only we had a tx that didn't harm the rest of our bodies...
Wishing everyone well with up coming surgeries. Knee replacements are brutal. Speedy recovery!
Sleep well, all!
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Thanks, Moni...had those nerve-wracking blood tests drawn this morning. I already have the results (on line) for some of the more ordinary tests. They never post the TM's so it is a waiting game and I really don't want to play! I wish you the best on your results and will be keeping you in my pocket as well!
I hope everyone is doing well. Hugs all around!
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Hello everyone. While searching for tumor marker info, I came across you all. I do not have breast cancer, but I did have Cancer. I will tell you the short version. In December of 2013, I went in for my yearly exam. My Doctor found that my liver enzymes were elevated. He called me back to redo the blood test. It came back just a little bit lower. After Christmas he called me in for an ultrasound. Then after New Years he called me in for an MRI. That is when he said I had something on my liver. He then made me do a cat scan. Then a biopsy. Then a colonoscopy and upper GI. Thank goodness those showed no Cancer. But the biopsy did show a cancerous tumor on the lower left side off my liver. My Oncologist ordered a pet scan and it lit up on those two spots I mentioned. I had surgery on March 26, 2014. I was in the hospital 6 days. I did get an infection and needed a blood transfusion. After I got out of the hospital and went back to see my Oncologist, he said I was cancer free. I did 12 chemo treatments just to be safe. My chemo ended August 28. He gave me a break, then he tested my tumor markers in October. They were a little high at 47.5. I went last month and they were 41.5. Then this past Monday I went and they were 42.5. He said he would see me in 3 months. I forgot to tell you that I had 20% of my liver removed and my left adrenal was removed. The surgeon said he got it all. When I read all your post about all your scary feelings, I could relate. I have two kids in college and a husband that I adore. I want to stick around a long time. I cannot shake this scary feeling. I have been to a very dark place. I am feeling better but still cry a lot. I pray and am walking as much as I can.When you hear that you have Cancer, everything shuts down. My husband did take me to the Basilica in San Juan Capistrano. That is where you pray to Saint Peregrine. He is the patron Saint for all Cancer victims. I did meet some wonderful people in that church and we plan to go back. I'm glad I found this place. I hear that we are all sisters now that we have this dreadful disease in common. It will be nice to be able to vent and gather our thoughts and ideas. No one understands how you feel until it happens to them. Talk to you soon. Hang in there. Never give up
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Babydoll ~ Welcome! Wow you have been through a lot. It sounds like you are doing better, but I know the feeling of impending doom. Let me just say (for the 1000th time), I HATE CANCER...any and all kinds. You are so right about how no one can understand unless they have been through the process. It is a journey and one that was definitely isn't the kind that anyone would choose. I have been to the Mission of San Juan Capistrano quite a few times. St Peregrine is my hero! I feel a great sense of comfort when I am in the chapel dedicated to him. One of my friends who had breast cancer a couple of years before me arranged a "field trip" (can you tell I work in an elementary school?) when I was first diagnosed in August of 2011. Now my husband and I make the trip from the San Diego area every few months and I am glad I found out about St. Peregrine. I am sure that most of us embrace a belief system that helps with our spiritual needs. Take care and as you said, "Never give up!"
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Linnyhop, thank you for your positive thoughts and to listering to my story. We all seem to have similar stories. Glad I found this spot to hang out in. Maybe we should all meet someday in San Juan Capistano? Be back soon. Debbi
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Hi all! So all the blood work is in. Mostly all in the normal range, or just a smidge out of range. The CA 27.29 is still high at
50. So I guess it's scan time. Will call my MO next week.
Linnyhopp- Any word yet? In your pockets!
Moni
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Moni ~ No work on the tumor markers. The liver panel is in normal range, but one is higher than it used to be. I am dreading "the call." My other tests are OK, with the exception of the SED rate which has been high since I was diagnosed with an immune system disorder about 6 or 7 years ago...polymalgia rheumatica and temporal arteritis. Try saying those terms without tripping over your tongue! On top of it, I have stage 3 kidney disease...I am a walking mess. I have read that kidney disease can alter tumor marker tests, so even though I am sad to have the kidney disease, I am hoping that's what messed up my number. You mentioned that your number is 50. Is that the same, higher, or lower than last time? Keep us posted on what your doctor recommends as follow up. Thanks for being in my pocket...the encouragement and caring that is shared here means the world to me! xo
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Linnyhopp- Wow that is a mouthful alright! But with a high SED rate and kidney disease, and chronic inflammation, seems that markers could not be accurate for you! My score was 3 down from mid January, not significant soooooo. Glad my MO posts them on on-line, would not like to be nervous with every phone call!
Waiting with you!
Moni
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Moni ~ So even though your tumor marker is basically the same (and even a little lower), you will probably have another scan of some kind? This whole thing really sucks, doesn't it? Most all of the results of blood tests is posted on line, but not the tumor marker test. Most of the results are in the normal range, but the SED rate is still high. One of the liver panel tests is a little bit higher but still well within the normal range. Of course my mind says, "oh no, it's higher, what does that mean?' I wish I could control the gloom and doom I feel whenever I have to deal with this stuff. And I know what you mean about the phone calls...my nerves are on edge whenever it rings. I am thinking I may get a call tomorrow...just in time to spoil the weekend. Sorry to be such a Debi Downer, but it helps to whine and complain. My family and friends try to empathize, (and I try not to talk about it very much), but until you have walked the walk, there's no way you can talk the talk. Again..thanks for listening and keep us posted on your next adventure!
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Moni ~ When they post the tumor marker results on-line, what is the name of it? Or does it just list the actual test name?
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Linnyhopp- Mine comes as a single test just listed as CA27.29. No word yet?
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No word and I just couldn't bring myself to call this afternoon. Guess I am the Queen of Denial! I will call on Monday if I still don't hear anything. Have a wonderful weekend!
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Hi girls!
Moni, 50 is just barely out of range, I don't think I would worry too much about that, hopefully a scan will ease your mind. My onc didn't order scans until I reached in the 80's. There are gals whose numbers are in 4 digits! My numberes went up pretty slowly, but with the Xeloda, they are coming down much faster! I'm happy with the decline, unfortunately is doesn't cure me!
Linny, there are 3 markers when I get my labs done, it's my CA's that are high, and my CEA is normal. My good news is that I have gone from the 120's to low 80's. so he is keeping me on the lower dose of Xeloda and put me on steroids to help with the rash I have.
There is the CA 27.29, which should be less than 38
There is the CA 15-3 which should be less than 31
And then the CEA, which should be less than 2.5Linny, not calling only prolongs your anticipation! But then I have a friend who says no news is good news, but she too is stage IV. My onc's office is awesome and even emailed a day earlier than I expected for results to be in, so only 1 day. Email came in at 6 in the evening, to let me know my numbers continued to come down.
GOOD LUCK!
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