Alkaline Phosphatase Levels Requiring PET Scan

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Alkaline Phosphatase Levels Requiring PET Scan
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  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    I am just finishing a very full year of 4 AC/T dd, then bmx with no reconstruction yet, and radiation. I saw my MO on Tuesday and we scheduled with my surgeon to remove my port this coming Monday. Today I received a call that the two doctors got on the phone and cancelled my port removal due to my alkaline phosphatase levels being above normal. They got me scheduled for a PET scan to be sure that there is no recurrance. They did say that it could also be from inflamation to the chest wall from radiation or liver problems, if I understood all the information correctly.

    Has anyone else had this problem and it not turned out to be a recurrence? Even if you did have this problem and it was a recurrence, does that indicate that it would be in the liver? How off were your numbers? They told me that normal is 50-136 and mine was 145. I would love to learn more about this while I am playing the waiting game.

  • misswim
    misswim Member Posts: 931
    edited March 2012

    ((((((J-Bug)))))))

    I don't know what to say except that i am thinking of you! It strikes me that while you are a little over the high end of normal, couldn't it just be from all the chemo and meds?

    xo, will keep you in my thoughts.

    Missy

  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2012

    When did you finish you last chemo treatment.  Your values are not all that high and if you recently finished, it could still be from the chemo, which is really hard on the liver. I'm sure you are really stressed over this, as I would be as well, but try to take a deep breath and remember that it could be from something else.  Keep us posted after the PET - we are here for you.  Wishing you nothing but the best results,

    Linda

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    I agree the values are not that high, but high enough that the two doctors wanted to leave the port in to be sure. Last chemo was on 10-07-11. I have not been on any extra meds since then, except an occassional Oxycodone at the end of radiation, no more than two in one day when the maximum dose permitted was 12 per day. I have been getting a cbc every four weeks since chemo ended and this is the first one that is off.

    I am not allowing my anxiety levels to go too high. I have to focus right now on my job search and interviews in order to keep the home life functional. I cannot get too worked up about something that may not be. If it is a recurrence, I will just have to face it when the time comes.

    Thank you for the support ladies! 

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2012

    Mine went way up to 127 during DD Taxol, then returned to normal within a couple months of finishing.  A lot of things can cause a rise, including statin drugs, alcohol, tylenol, etc. 

    The PET will give you peace of mind.  I had one before removing my port, too.

  • bevin
    bevin Member Posts: 1,902
    edited March 2012

    Hello, My ALP increased steadily over the last year to a high of 169 this past December. I had a scan, I am fine. No recurrence and now 2 months later,its dropping again. My Onco said Chemo and radiation can also increase ALP temporarily.

    I hope you're fine and have no issues to worry about. Keep us posted. I know that rising numbers can be stressful so definitely empathize with you.

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    ...hmm, no alcohol, not statin drugs, no Tylenol. I still suspect the radiation inflammation idea, since that just finished a couple of weeks ago. I just think that it's funny that through all the other treatments, it was never up.

    Thank you ladies for your input. 

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited March 2012

    Hello ladies.  Enjoyed reading your posts tonight.  I am so sorry for those of you that are having some problems.  I am so happy to welcome more to the "Finished" club.  I am so glad this part is over.

    Maggie:  "Slathering"!  I love it!  I used that word the other day at the office and my boss told me he had never heard that word before.  I told him he couldn't be from the south then!  LOL!  I loved seeing you use it too.  At least I know I'm not the only one that knows what it means!   Hang it there!

    Surprisingly, my skin is healing very quickly and I really am feeling good.  The area under my arm and around the nipple is peeling pretty badly but still seems to be healing.  My breast is no longer that deep, dark reddish purple, but looks more like a tan now.  The RO told me in about 10 days I should be in really good shape.  I finished last Thursday so it's been almost 7 days for me and so far, he seems to be correct.

    Starting to feel a little funny because I'm not constantly running somewhere to a doctor.  Feels a little weird.  I guess I am just trying to find my new normal.  Little scarey too.  I mean, you know, what's keeping the cancer at bay now?  Well, I am supposed to start tamoxifen on March 5.  I really hope I don't have any bad SE's from that.

    Here's wishing everyone well and quick healing.  Hang in there.  There is a light at the end of this tunnel.  You are all in my thoughts!

    HUGS!

  • Susie123
    Susie123 Member Posts: 804
    edited March 2012

    J-Bug, my ALP levels have been around that number for the last 2 years. They've done all the tests and they show nothing. My onco said he sees a few people each week with elevated ALP's and no other issues. I too don't drink or have any other medical problems (other than BC). Mine stay around 150 to 160.

  • mari55
    mari55 Member Posts: 693
    edited March 2012

    Elevated alkaline phosphate can be an indication of bone loss- especially if it is the only liver enzyme elevated.  This can be from many things- low vitamin d is one and is easy to check out and treat. It can be from bone mets too so it is wise to get ti checked out.  Mine were elevated when my bone mets were found ( so was my serum calcium- a better indicator of the mets) and I had a low vitamin D.  Treatment has stablized it all

    Mari 

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    Thank you ladies. This is very valuable to me.

  • rabbit
    rabbit Member Posts: 613
    edited March 2012

    hi J-Bug, all of my liver enzymes were high until just recently. I do take pain meds with tylenol so that's part of my problem, but chemo put mine out of whack for a while. The waiting game sucks,when do you get your PET scan? Peace of mind is such a great thing!

    Hugs to you! 

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    mari55: I wanted to specifically thank you for your input. I appreciate that you just calmly gave me insight from a deep level of experience that I just don't have. I will ask about the bone loss too. I know that my MO said something about taking something for that eventually, but he gave me the script for Tamoxifen but nothing for bone loss. That is a good reminder to ask about that again. I am not trying to go on an emotional rollar coaster about this, because I know that I will have those opportunities for the rest of my life. Thank you again.

    Hey rabbit. Good to see you. You've been missing a bit with all the work and rads going on. I am waiting on insurance approval in order to schedule the PET, so it could be two weeks or so. I think that I have seen that there are a lot of times that this occurs for many reasons, so now I just need to keep my focus on that job search and the contract work that I have.  

  • momof3boys
    momof3boys Member Posts: 896
    edited March 2012

    Here is my experience with this, and I'm "new". Started my chemo 12/29 (4 tx of TC, had the last one yesterday). My ALP was 65 at beginning chemo. Next tx bloodwork showed 145, next was 155. That's when I saw it (MO didnt give me copies first time, nurse in infusion room did). I didn't even know what ALP was, and everything else was in the normal ranges. Got home, googled it and got upset. Info did say that it could be caused by chemo or Neulasta (I had Neulasta too). And it said that it's a liver function test that could indicate bone metastasis (and a dozen other things!). Well, of course I latch on to the bone metastasis, because I'm having horrible bone pain!

    I call my MO and she telle me not to worry, they jump all over during chemo and for a period after chemo, and she doesn't even mention it to her pateients because of this. She's sure it's from the chemo and the Neulasta. We talk for a few more minutes, mostly about me telling her that I can't believe the level of bone pain Im having... She then says, "Let's schedule a bone scan. I know it's from the chemo, but you need to move forward and get some relief for your worry". So that's what we did. Scan was scheduled for the following week (hard week). Had the scan, was not difficult at all. Took 45 min. Radiologist immediately came out to me and my husband (after 15-20 min waiting) and went over the test with us. It was normal.

    My bloodwork yesterday was normal. ALP was 67. The only thing I changed in my diet: she wrote me a prescription three weeks ago for Vitamin D, mine was low (26), and I didn't take one Tylenol. I was taking 10-12 Tylenol a day with the bone pain, but switched to Aleve. I did ask her if Tylenol could cause the elevated ALP and she said no, but I'm wondering....

    Hope this helps.

  • aussieched
    aussieched Member Posts: 244
    edited March 2012

    Hi J-Bug

    I know it is hard not to worry, however I also totally freaked out when my ALP continued to climb up over 150.  It stayed stable at that level for about 18 months.  I was very concerned as what the ladies above have said, can indicate problems, my Onc on the other hand was not overly worried, and kept telling me to chill out, he said lets just watch and wait.  After about 18 months it then started to decrease and at last test it was just a bit outside of the normal range.  The Onc said it could be caused by the radiation, loss of estrogen from having had my ovaries out and from the Femara, maybe a combination of all of the above.  So hand in there with it all

    Ched

  • nancyh
    nancyh Member Posts: 2,644
    edited March 2012

    Hey J-Bug,

    Just wanted to let you know I'm sending positive thoughts.  Two weeks to wait for insurance approval?  That seems a bit long, so hopefully they will clear it sooner.  I always feel the "not knowing" part is hardest.  Hang in there and I'll be crossing fingers and toes for you.

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    Thank you nancyh. I am going to give them a call this week and check on it.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2012

    j-bug - my DH was prescribed a med for which they did a routine panel prior to allowing him to take it.  It is a drug that , while he would only take briefly, is hard on the liver.  The doc called in a panic because his levels were sky high, double yours.  Turned out that glucosamine and condroitin supplements were causing it to be elevated.  He stopped taking them (he is a distance runner) and the levels returned to normal within two weeks.  I don't know if you are taking this supplement but this is a rare SE.  Good luck, and I hope this is temporary and easily explanable.

  • bevin
    bevin Member Posts: 1,902
    edited March 2012

    HI all - one more SE I read about for Arimidex  was increased ALP levels. See section 6.2 from astra zeneca who makes arimidex -  this finding was found post marketing so after  the trials were done. Are you by any chance on it or another AI?

      http://www1.astrazeneca-us.com/pi/arimidex.pdf

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    Nope, I only take vitamin D3, vitamin B complex, multivitamin, CoQ10 and allergy meds - not even Tylenol. I was supposed to start Tamoxifen, but we are waiting until after PET results now. I don't have any new aches and pains either, just the rotator cuff issue that I have had since bmx. I tend to think that this will be a nonissue at this point, we'll see when they tell me I guess.

  • mahometmom62
    mahometmom62 Member Posts: 132
    edited March 2012

    Hey J-bug. I so feel what your going thru but listen to my story......



    I had a visit with a ruemetologist to discuss aches and pains and joint issues. My last chemo was 1/24/11. He did 9 vials of tests and all were fine. Except my ALP. Normal range is 30-121. Mine was 137. Now my question is my onco only does basic metabolic panel. Why on earth does he not do a complete??? My last complete was done 5/11/11 by my onco. Omg I am freaking out. I got thru my one sided mamo and it was fine!!! But now this? Wow. So I work At my primary care doc office she said many things can elevate this so she is doing the alp lab again tomorrow. Fingers crossed. No wine the night before have not taken glucosomine for 2 weeks. My onco said we would test in 3 weeks. I am having it done tomorrow. We leave for Florida on the 16th. URG!!!! I am sick of worrying!! And your story freaks me out I am really surprised they are doing a pet scan. But better know your ok and get that stupid port out. Please let us know what you find out. AND IF ANYONE HAS THE SAME THING TELL US WHAT IT ENDED UP CAUSING THE ELEVATION. GOOD JUJU EVERYONE

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited April 2013
  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    ...still waiting. I called the insurance every day this week. Yesterday I found out that my preauthorization for my PET was denied. Now my doctor is working to figure out how to convince them. Amazing! My MO is concerned about recurrance and they won't let us do what we need to do to find out!!!

    I am so glad that I kept my mind wrapped up in the job search instead. This medical CRAP will always be waiting for me to think about.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited April 2013
  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    I would have to agree with you Day!

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    I did get approved for PET scan after my doctor provided more ammunition to the insurance company. I did the PET on Thursday last week and go to get results tomorrow. Cross your fingers for me!!

    On Friday last week, I had a visit with my RO and she was talking about something that was found on my pelvis when I was first diagnosed and she referred to it by name. I believe it started with an "e" if I remember correctly. But she said that it was a benign tumor. I had heard somewhere along the way that it was just a bony mass probably caused by an old injury. I definitely want to ask about that one again. I keep trying to get a handle on all this new medical training I have been going through this last year.

  • bak94
    bak94 Member Posts: 1,846
    edited March 2012

    Fingers and toes crossed!

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    Thank you!! All clear! I am waiting to hear from my surgeon about port removal. Thank God. I have been needing to get back to finding permanent work for so long now. Enough of this contract on again, off again work! Now I can focus on the interviews I have lined up.

  • bak94
    bak94 Member Posts: 1,846
    edited March 2012

    WhooooHoooooo!!!!!!! Good luck on the job hunting. Now your mind can be so much more clear!

  • J-Bug
    J-Bug Member Posts: 626
    edited March 2012

    Yes!!!!! In a phone interview today, the HR person told me that the hiring manager actually gave her an old resume of mine and asked her to track me down and see if I was still interested in working for them. (I had applied for a different position that I was less qualified for a year ago.) That sure is good for the ego after all the heartache this last year.

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