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Tumor markers elevated, a little worried right now.

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  • netty46
    netty46 Member Posts: 68
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    marie k how high r they?

  • netty46
    netty46 Member Posts: 68
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    Kindergarden    so will they scans if your are elevated?

  • MarieK
    MarieK Member Posts: 467
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    Netty my CA 153 went from 17/18 to 36 in Feb and just recently to 75.  I had a bone scan and P/T scan and will hopefully get the results on Oct 3 when I go see my ONC for a follow up (2 weeks after my 6 month check up).

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Marie, Bless your heart, you had a quite a day.  It has been awhile since I have had a CT scan.  Thank you for the info on what to expect. Please enjoy your father's visit and keep us posted!!!Smile
  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, Netty, sorry I missed your post!!! My tumor markers went down on my last blood test, so my onc said no scans for now. We will retest in November and go from there. Since, both the CEA and CA 2729 went down, she seemed very positive about the results. Have a great day, and let us know how you are doing!!!!Smile
  • netty46
    netty46 Member Posts: 68
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        kindergaten and marie:

    what do they think causing it? are you on chemo now? im on chemo now.  my cea was 0.5    then my ca153 was 36.1       ca27.29 47.  They want scans with these numbers.  The chemo already worked on my breast and shrunk it down. Im lost here. 

    Oh I had scans allllllllllllll of them with contrast 2 months ago all clear and i mean every scan under the moon pet, mri of all spine, mri of breast, cat scan of chsest, bone scan u name it.

  • MarieK
    MarieK Member Posts: 467
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    Netty I hope you get some answers soon and ease your worrying...

    I saw my ONC today for a follow up to the Bone Scan and C/T Scan.  

    My C/T scan was clear but the Bone Scan showed a suspicious lesion on my RIGHT HIP!  What the heck??

    She asked me if I had injured my hip or fallen recently.  I honestly don't remember...I am rather clumsy and bump myself constantly.

    But the funny thing is that I did fall quite badly on my right side 2 days AFTER the bone scan! I know I sound frail and off balance but I'm really not - I'm just a bit clumsy and I have an old dog that keeps getting under foot!

    Anyway now I have to get my right hip x-rayed (going on Friday) and do a repeat of my bloodwork next week. 

    I see the ONC again on Nov 1 to go over the results of the xray and repeat blood work.

    Should I do a cleanse before my next bloodwork or just eat/drink normally and see what happens?

    I'm not sure what to do - I want an accurate reading from one test to the other.

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Marie, What were your numbers again?? And when your onc said lesion, could that also mean scar tissue from a healed injury. I know it is hard not to worry, but definitely eat healthy, drink lots of water, try not to take any over the counter meds, if you don't have to and keep exercise to a minimum a few days before testing. That is what I was told. I hope that helps and prayers are coming your way for good results.

  • MarieK
    MarieK Member Posts: 467
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    Thanks Kathy!  I will try to follow your advice pre-bloodwork.  I have already reduced my caffeine and increased my water intake.

    My latest CA 15 3 was 75 (double from Feb 36).

    The ONC did not expand on the "lesion" other than to ask me if I had ever injured my hip or recently injured it or felt pain in that area.

    I'm currently taking Aleve (on advice from GP) for jaw/neck/shoulder issues and it's working. 

    I'm going for a hip xray on Friday and will put off the bloodwork until next week since I'm not seeing ONC again until Nov 1.  

    I'm considering putting it off until after the 18th because I know I will check the results online and if it's increased again I don't want it to ruin our trip to Napa (Oct 12-18).

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Marie, I am just thinking that if your onc doesn't want to see you until November 1st, he might not be too concerned, just to give you some peace of mind. Please know that you will be in my thoughts and prayers and please enjoy your trip to Napa. However, if your pain increases, please contact your onc! Blessings to you, Kathy

  • netty46
    netty46 Member Posts: 68
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    Hi

    when was your last bone scan/cat scan? how often do they do this?

  • netty46
    netty46 Member Posts: 68
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    Marie does your doc not do the ca27.29?

  • MarieK
    MarieK Member Posts: 467
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    Netty I've never had either before - this was my first CT and bone scan - and I was diagnosed in 2009.

    I have regular mammograms, chest xrays, pelvic and abdominal ultrasounds and bone density tests as part of my follow up. 

    No I don't have the CA 27 29 test - I get the CA 125 and it's been consistently low 6,5,6,6,5 (reference range for this test is <26).

    I'm now thinking that if my ONC can't see me until Nov 1 then I should probably wait until after my vacation before going for another bloodtest.  

    Thanks Kathy for being so reasonable.  You're right.  The urgency was to get the scans done and followed up.  Now it's just a wait and see what the xray shows and what the repeat bloodwork shows.

    If I wait until closer to the next appt then it can't affect my plans for our Canadian Thanksgiving (this weekend) or our upcoming vacation. 

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Marie, Please keep us posted and enjoy your vacation!!!

  • netty46
    netty46 Member Posts: 68
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    marie in 3 months i have had so many scans its crazy. now 2 more  monday. thank god they have been clear but its alot of radiation.  my first was a pet scan.

  • sharm
    sharm Member Posts: 1
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    This happened to me when I was a five-year survivor.  My tumor markers rose gradually (monthly tests by oncologist who felt that I had a recurrence somewhere) over 1.5 yrs, but tests, bone scans, pet scans, cat scans were negative.  My hip started hurting, and went to primary care physician.  She referred me to a pain specialist, who ordered an mri with and without contrast.  MRI with contrast showed suspicious spots on hip and lower spine.  Oncologist ordered biopsy which showed that I have breast cancer bone mets.  Biopsy is very important, because mine showed that the type had changed from hormone positive to triple negative.  This affected the course of treatment.  I've been on Xeloda and Xgeva for one year.  My tumor markers have returned to normal, and the hip pain is gone.  I'm thankful that mine was diagnosed while the tumors are still tiny, and that so far the treatment is working.   Please keep following up with your oncologist on your tumor markers and any suspicious symptoms. 

  • netty46
    netty46 Member Posts: 68
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    sharm

    how bad were the tumor marker numbers when this started?

  • diana50
    diana50 Member Posts: 253
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    this is my experience with tumor markers.  i was 10 and half years out from initial dx.  my onc had been following me every 6 months for 10 years.  my markers were always under 38./  usually in the 20;s  they started to hit the 30s;' in january.  by august they had doubled to 66. in a week (onc wanted to check again) they were 82.  onc ordered a PET/Ct scan and there it was; a spinal met to my T4.  because of the stability of my markers over a long period of time; the doubling and increase was a red flag to my doc.  the Pet scan found the cancer.  i saw it;  it was a very bright spot on my spine.  so, now i am in treatment and this came pretty early on.  i had no pain; no symptoms at all.  if my doc wasn't doing markers;' i could have gone a year or more before this progression was noticed.  TM 's work for some, for some they don't .  i feel blessed that they worked for me and the one lesion was found early.  i am in treatment.  and i am very optimistic.

    hang in there

    diana

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Diana, thank you for sharing your story.  I hope you are doing well, you have been so kind to share what has been happening with you.It will definitely keep me more vigilant about my tumor markers. Since mine had come down,(still not in the normal range yet), my onc said she liked the trend but will still wants to retest in November. I am so glad that I started this thread, because of you and others who have shared their experiences, we all have a heads up on how to keep a close eye on this insidious disease. God bless you, Kathy

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Sharm, thank you for sharing your story and I hope you continue to do well. Marie, checking in on you, how are you doing?
  • MarieK
    MarieK Member Posts: 467
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    Kathy thanks for checking on me here (and PM).  I will repeat what I replied to you here for the benefit of others.

    My markers went from 18 to 36 to 75 in 1 year.  My recent CT scan was clear but the bone scan (my one and only) showed "suspicious lesion on right hip".  This was very strange since my cancer was found in my left breast!

    I had a hip xray on Oct 10 - will review that with MO on Nov 1 - and a repeat of my blood work on Oct 12.

    I didn't really do anything special before I went in for the repeat bloodwork other than cut back on my caffeine, get more sleep, drink more water, and take some Advil.

    I checked my lab results and my very last TM was 61 (Oct 12) so a decrease from the previous test result of 75 (Sept). 

    I'm not sure what to think but I can make some excuses as to why it might have increased based on what I've read on here.

    I went in the morning for my previous 2 blood tests (with increases) and I didn't eat or drink before so I was probably dehydrated, and I wasn't taking any pain/anti-inflammatory meds. Both times the tech had trouble getting a good sample.

    For this last test I went in the afternoon and made sure that I had plenty of rest the previous night and drank a lot of water and not so much coffee beforehand.

    Not sure if that made a difference in the result but it made the blood draw easier and I felt better afterwards.

    Also, I was just on vacation in San Francisco/Napa and did a LOT of walking and a bit of bike riding (15 miles).  I did experience some pain in my right knee and hip which reminded me of another time years ago when I did the same thing.

    I knew that i would probably overdo it a bit so that's why I went in for my bloodwork BEFORE my trip.

    I see my MO on Nov 1 and so I'm hoping that he will be able to shed some light on the "susp lesions" in my right hip and let me know the results of my xray.

    I will keep you posted!

  • artsee
    artsee Member Posts: 701
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    diana50..what is your treatment that you are on since the found spot on the spine?

    Marie...It's the pits isn't it? You go to the Dr. in a good mood and then when you least expect it..there is something suspicious. I was at my apt. on Friday and out of the blue...there were the liver enzymes moving up like a mountain on the screen. I hadn't done anything different except I started taking Green Coffee bean extract for weight loss. Let's hope that's whats causing that. Although I can't find info that would assure me. :(

  • txmomof2
    txmomof2 Member Posts: 48
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    MarieK - you said, "My recent CT scan was clear but the bone scan (my one and only) showed "suspicious lesion on right hip".  This was very strange since my cancer was found in my left breast!"  So, is it typical for cancer to only come back on the side that you had the breast cancer?

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear MarieK, Thanks so much for your post and updating us. Artsie I sure know how the rise in liver enzymes can scare you!!! I went through a period where my liver panel would show a rise and fall in ALT over a period of time. So many things can affect the rise in enzymes. As soon as my liver enzymes went down into a normal range, my tm's went up. Crazy. A very wise oncology nurse told me that women and especially breast cancer patients will probably never see totally normal bloodwork again, especially with all the medications and drugs that we have taken. Has the doctor ever told you that you might have a fatty liver? I have a fatty liver caused by chemo and all the medications I took. Hope everything turns out great for you as well. 

  • artsee
    artsee Member Posts: 701
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    That's interesting kindergarten, fatty liver. No he's never mentioned that. Could a thin person have one? Where would a fatty liver come from? I imagine probably eating fatty stuff. I had this happen in 2009 but then it came from a prescription drug. When I went off they went down....till now. Well, I've got 8 weeks to get them down and then another blood test.

    I've been fortunate to have the TM stay at 15 for a long time now.

    Next blood test I"m going to drink a gallon of water first. :)

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, Artsee, Yes, from what I understand, thin people can also have a fatty liver.Fatty livers can be caused by many things. High cholesterol can cause it too. I find if I eliminate coffee, meds(except my AI), alot of exercise(yes they tell you not to exercise the day before bloodwork, it can tax your liver) and eat better the week or two before bloodwork, I have better results. Yes, drinking alot of water is key!!!! I have actually given up all over the counter meds, even vitamins. Another woman on this thread gave me this advice. Good luck, hon!!! Keep us posted, don't worry. Your tm's are great!!! Also my onc told me that my liver enzymes have to go through the roof, before she panics. Blessings, Kathy

  • artsee
    artsee Member Posts: 701
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    And why were your Liver enzymes up Kinder? Did they figure that out?

    I feel much better now and will go off of all the vitamins and coffee before my next BW. I have 4 cups every morning and I did that morning too plus a bottle of water.

    It wouldn't surprise me about high colesteral....seeing as that is caused by the AI's we are taking. Damned if you do and damned if you don't.

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, Artsie, Doctors have never pinpointed one thing that caused my elevation. I am on aromasin again, after being off it for 6 months. I was on it for almost 7 years and my onc in Chicago took me off it, saying I was on it long enough. Since we moved to CA, my new onc wants me on it again. I have a feeling that my liver enzymes may rise again. I know women who forget and drink alcohol the night before their bloodwork have  an elevated liver panel!!!! I truly believe that AI's are the culprit. Yes, definitely cut down on caffiene a week before BW, that will help. I am drinking half and half coffee now. You are so right, damned if we do and damned if we don't. Catch 22!!!

  • artsee
    artsee Member Posts: 701
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    Ooops....better forget that glass of wine too the night before. Gosh I didn't think of any of that because the tests of the past have been so good, Interesting how comfortable one can get.:) I just need to get to next May with Femara (Letrozol) and I go off. Of course then I'll be wishing I was on it so I can have that veil of protection again. Sigh.....

  • MarieK
    MarieK Member Posts: 467
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    Hi All!

    I saw my ONC on Thursday (Nov 1) but then the sh*t hit the fan with my son (SR in high school).  

    Lots of stress right now and it's taking up all of my time.  

    Nothing too serious just a lot of "family stuff".

    My son just failed his driving road test (twice now) and is doing poorly in grade 12.  He wants to study business at University but his marks are really bad and if he graduates high school this year (yes that is now in question) or even makes it to university next year that will be a miracle. A lot of changes and hard work coming up!

    My daughter is in 2nd year university (at a great school) but has "lost interest in academics" and wants to quit and work to save up money to go visit her boyfriend in Australia!!

    Also everyone here has had the flu except me so I've been busy "tending" to eveyone.

    I remember reading once that a mother is only as happy as her children are.  This is so true in my case!!

    Anyway the ONC told me that the "suspicious lesion/s" on my RIGHT hip are a benign bone tumour.  The radiologist report came back benign (I don't know how they can tell without a biopsy) but he even went back and studied both the bone scan and CT scan again before making that conclusion.

    There is a big name for it - which of course I can't remember - and the ONC tells me that it is quite common but it is not related to my breast cancer and not the reason my TM went up.  He wants to repeat the bone scan in 2 years to monitor it.

    He confirmed that my TM has gone down 14 pts but he has no explanation for the rise or fall.  Actually he said "if I had given you chemo and the TM went down 14 pts I could have said "see the chemo is working""  so he's puzzled except to blame possible inflammation as the cause.

    txmomof2 - I'm not sure about your question.  I just assumed that if I had a recurrence it would be on the side or close to the original site of the breast cancer.  That's why I was getting so stressed about this jaw/ear/neck/shoulder pain that I've had on my LEFT side since the summer of 2010 (1 year after my dx).  I keep complaining about it thinking that it's a possible recurrence but the tests all come back negative and the drs are not worried about it all.  Massage and anti inflammatories are the common responses.  I've also been very conscious about carrying my purse on the other shoulder and I have to say it's been making a difference.

    Back to the tumour marker changes - my progonosis is this - more frequent blood work to watch what the TM does on the next test (1 month from now and a standing monthly order for the next 2 years) and if there is an increase again the ONC will order a PET scan.  If it continues to decline after a few months then we will go back to 6 month visits and bloodwork.  

    My ONC tells me that the highest TM CA 15-3 test results he's seen have been in the tens of thousands (I have to question why the reference range limit is >45).  So he isn't really concerned with my increases - at this point.  He also tells me that some women bounce around a lot and it's just the way it is. 

    I know it's hard when you get back weird test results but in my case I'm not going to worry about.  I'm pleased that my ONC is monitoring me and he isn't concerned so I'm not going to be unless I have reason to.

    Also, I've got so much stuff going on at home right now I need to focus on being a busy mom!!

    Have a great weekend...

    Marie