Alkaline Phosphatase levels

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dunnmd
dunnmd Member Posts: 13
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Level is at 148 now.  In Nov 2010 level was 116. Does anyone know if that is enough of an elevation to be concerned? 

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    Hi Dunnmd your levels should be at between 25-100U/L or 0.43 - 1.70 microkat/lt.  They test the Alkaline Phosphatase levels to check liver function.  With your levels rising, I would be asking a few questions of your doc.

    Love n hugs.  Chrissy

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  • dunnmd
    dunnmd Member Posts: 13
    edited July 2011

    Chrissy,

    Thanks for the post. I am new here.  Just found this site on July 1st. The first part of my journey in 2001 I did not find a place to lean on.  I have been in touch with the NP at the Onco office. I have been experiencing pain in the lower right rib now for 6 weeks. It is much worse at night.  About 2 weeks ago when it became so bad that I could not sleep for three nights in a row, I went in. She ordered a chest X Ray and blood work. Called the next day to say the X Ray did not show any broken bones but the blood work looked a little questionable.  Not all results were back.  Promised to call on Monday.  Finally on Tuesday I called and asked it the receptionist could fax back the lab results.  She put the NP on the phone, she said the AP levels were high and hemocrit is low, Ordering a scan to be done before the end of the week.  Finally someone called on Thursday to ask if I knew I was scheduled for the scan next Wednesday. Ok at least things are moving but I asked once again if I could have a copy of the labs faxed.  Instead put the NP back on the phone, I asked what the level was she said 148, I asked what is normal she said 20-120, Pretty broad range?  I called again on Friday asking about the labs and once again they took my fax number and said if we can't fax I will call you back. Never heard nothing from her,

    Makes for a long weekend. She did say that the other three liver panels are fine and they do not suspect liver involvement. We are only looking at the bones.  I firmly believe that the reports should be available to me.  After all, it is my life, just her job.  It has been almost 10 years and this is the first time that I have been really fearful that it is still out there.

    I understand you have bone mets. WHere and what does it feel like.?

    I wish I could just sit back and not be concerned but I can't.  I am now looking at almost three weeks since I first called the doctor. Doesn't that seem to be too long?

    Thanks

    Trudy

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    Trudy I'm so sorry that they haven't got the balls to ring you and be a little more truthful with whats going on.  I think that sort of behaviour is unforgivable and you should make your displeasure known to them.

    Do you know if they tested the calcium levels  and Vit D as well as PTH?   Why I ask, is that they are all connected in a way that will point to a possible Dx with scans for confirmation.  Also, these are the type of tests that were run for me when I had my mets confirmed.  I really don't want to scare you, but it is possible that the news won't be what you want to hear but don't stress over it just yet.......nothing is confirmed for you, they are still looking.

    My arm from shoulder to elbow was one large met and I have a pin in it to stabilise and prevent breaking....this was done two years ago and my last scan says that it has almost completely resolved so at the moment I am NERD  (No Evidence of Recurrent Disease).  Prior to the Dx, the pain in my arm was excrutiating to the point I just didn't know what to do with it as there was no comfort to be had anywhere and I was living on ibuprophen + codiene,  This pain med was barely touching it in the end and kept me awake at night.  Once it was confirmed, I had rads not just to destroy some of the cancer but as a pain relief and after just a couple of treatments there was a huge difference in the pain level.  My treatment other than that has been Arimidex to start then I had a spot appear on my rib so I was changed to Femara and the spot has disappeared and nothing new has shown up as yet.

    Trudy, I don't know where you are from, but what I have found, that different countries have different ways of approaching the screening and testing for BC.  So depending on where you are, three weeks is not too bad.  I know it feels like forever when you are waiting for answers but you are scheduled for your CT in just a few days now so you will have some answers very soon.

    I'm here if you need to chat.

    Love n hugs.  Chrissy

    Take heart, if it's confirmed that it hads come back for you it still does not mean an immediate death sentence.   There are many treatments available to ER/PR+ and they say that bone mets are the easiest to treat and control.

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  • dunnmd
    dunnmd Member Posts: 13
    edited July 2011

    Chrissy,

    The scan results are in.  You were right, not what I wanted to hear.  It looks like involvement in ribs(,left and right ) 6,8,10, and 12 and in the back ( pain is in the right front), spine T11 and T12, pelvic bone, and the entire top of my skull.Now back to waiting... they are going to schedule a CT Scan looking for organ involvement and a biopsy from the T12 site.  I have been having pain in my back for years, they told me that is was degenerative arthritis, so I have just dealt with it when I should have insisted that they take a look at it. 

    Do you know of anyone with mets in the skull?  It seems so scary. Doctor says that she is not sure it is BC because it has been so long.  Maybe another cancer... lymphoma or myloma? 

    Still worried,

    Trudy

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2011

    Ah Trudy I'm so sorry, that's certainly not the news you wanted to hear.  I do know that there are a few girls with mets to the skull but I can't think who they are at the moment but I'll put on my thinking cap and see if I can remember.  I'll post their name or better yet, start a new thread headed with that question as you will get a lot more answers a lot quicker that way. 

    So far the mets are all in your bones and hopefully the CT will not show them any where else and if that is the case, they will probably do some rads to the most painful area and then an AI and a Bisphosphinate.  It is also possible that the onc may suggest a chemo but don't be alarmed if they don't.  I know the thought of mets to the skull is a scary one but truly, it really is just another bone and it will respond the same way as other bone does to treatment.  Mets can come thirty years later from BC so I can't understand why your onc says that she is not sure that it is but I guess doing the biopsy will support the Dx (diagnosis).

    You have unfortunately joined the ranks of the Stage IV girls but there is still a lot of living to be done by all of us so come across to the Stage IV Forum where you will find a whole lot of girls that will support you every step of the way.  We really a great bunch.

    Please let me know your CT results and I'm hoping they come back just showing what you already know.

    Love n hugs.  Chrissy

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  • nancyh
    nancyh Member Posts: 2,644
    edited July 2011

    Dear Trudy,

    I'm so sorry to read this, I was following your posts and really worried about you.  As Chrissy says, come over to the stage 4 board, you will get loads of support.  Blessings and hugs to you. 

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