Elevated alk phos and back pain

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KMom57
KMom57 Member Posts: 252
edited May 2021 in Not Diagnosed With a Recurrence or Metastases but Concerned

I know there’s nothing anybody can say to make me less worried, but alk phos was elevated again on the recent lab. That, combined with pain in my lower back and hip buys me a lumbar and pelvic MRI. Tomorrow. Tried hard not to let my mind go there. But it’s not working. There is a tumor marker lab in my portal, but I haven’t let myself look at it. The thing that worries me most is that in January of 2019, before my diagnosis, a lumbar MRI noted small hypointense lesion on my iliac and two vertebrae. So my mind goes there.... Does anybody know....if it had been an undiagnosed met, would it have grown by Oct of 2020? Because a CT in oct 2020 noted lesions but said they were well circumscribed and unchanged from my Oct2019 CT. That’s good, right?

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited May 2021

    so you had an MRI in Jan 2019 then a CT in October 2019 then another CT in 2020?

    Yes that is good that it was note as unchanged 2019 to 2020

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Yes. The MRI in January was never compared to anything as it was pre-diagnosis, in a different city (done for tingling and numbness). The CT in October 2019 was after diagnosis, noted lesions likely bone island. Another in October 2020 before rads notes lesions, says they are unchanged from 2019 and well circumscribed so likely benign. But now there’s pain on that side, and elevated Alk Phos...

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  • Melbo
    Melbo Member Posts: 346
    edited May 2021

    man that alk phos number is biting a lot of people right now. Have you had it fractionated to confirm it’s coming from the bone? How high is it? How long has it been elevated?

    mine has been consistently elevated since the end of February, but only 137 when 116 is the high end for the test (for my lab anyway.) I didn’t have any bone pain or other symptoms so my MO was not worried at all, but he agreed to do the fractionated test to see where it’s coming from and a liver ultrasound just to make sure. He offered me a bone scan as well, but since I don’t have bone pain I decided we would just start with the blood test and ultrasound.

    Deep breaths. There are a lot of benign reasons for the number to be elevated. I definitely understand your fear though

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Melbo— 115. High end for this lab is 104. No i haven’t had it fractionated. All my liver tests were solidly normal. Calcium too. I did have my last covid vax three weeks prior to the lab. MO said it was not likely to be connected, but I wonder. He wasn’t particularly concerned about the Alk. It was the back and hip pain that concerned him I Think

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  • Melbo
    Melbo Member Posts: 346
    edited May 2021

    have you had vitamin d tested or had a bone density test? I’ve been doing a ton of research for the last several weeks and both of those seem to be possible contenders for causing elevation as well. My vitamin d was low so I’m hoping that was the culprit for my elevated numbers.

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  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited May 2021

    Kmom my alp was elevated calcium normal. I was freaked out but my mo said not to worry that Gemara can cause increased alp in some. I still had liver ultrasound and bone scan all was good. Still have left hip pain but the bone scan picked up arthritis there so it’s not always cancer tho our minds go there. I had the tests for my peace of mind. Now I do other stuff for my hip. Good luck and hang in there

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Thanks Giddyup girl. Glad to know yours was fine.

    Melbo, yes checked VitD. Was in range (36) but just barely. Def the low end of normal. Had first bone density in Jan. Normal except for lower lumbar spine which was “mildly decreased. Osteopenic by WHO standards it says.

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Sitting in the MRI dressing room waiting. Generally try not to complain and see the positives. But this frankly just sucks. Not even sure what to call it.....”journey” sounds like an adventure and this whole thing isn’t that.

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  • Melbo
    Melbo Member Posts: 346
    edited May 2021

    that’s how I felt waiting for a brain MRI. The best I could come up with was bad trip.

    Good luck!

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Bad trip....that’s close to the description I’m looking for. Boot camp.....but at least that had a definite graduation date I could count down to....

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    MRI results. Arthritis. No cancer.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited May 2021

    KMom57 That's great news! Hope you can find a way to control it that works for you. I've found that Motrin works really well on arthritis, although I'm no longer allowed to use it for other reasons.

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  • Melbo
    Melbo Member Posts: 346
    edited May 2021

    boo for arthritis! But YAY for no cancer

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  • LaughingGull
    LaughingGull Member Posts: 560
    edited May 2021

    Fantastic news KMom57. I was lurking around here bc I also had elevated ALP now and then. Always came back to normal and nothing in scans. Happy to hear it wasn't cancer.

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    AliceBastable, Melbo and LaughingGull — thank you. I can breathe easier until my “new baseline” scan this summer. Funny how your perspective can change.....who’d have thought I’d ever be saying “woohoo!!! I have arthritis.

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  • wallycat
    wallycat Member Posts: 3,227
    edited May 2021

    Congrats on the b-9 situation!!

    As we get older, we'll have more and more "stuff happen," but if we can have quality of life, that's important. I hope your onco/pcp can address the pain issue and help you move forward.

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Thanks Wallycat. I have discussed with MO addressing QOL/AI issues, am restarting PT which I had to drop during rads, etc., and I’m trying to figure out to deal with the anxiety too. I’m not sure how one moves past the pervasive fear, but I’m determined to have a life. I appreciate all the encouragement.
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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited May 2021

    great news! Celebrate the good news for a while

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  • KMom57
    KMom57 Member Posts: 252
    edited May 2021

    Thanks 2019.

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  • LittleBungle
    LittleBungle Member Posts: 6
    edited May 2021

    hey have been lurking 😂

    Woohoo congrats on it not being cancer. It is weird how pre cancer an arthritis diagnosis would’ve been a big deal but now we celebrate these things.

    Wondering if anyone can help me? Have finished chemo following a mastectomy and lymph node removal. Waiting for radiotherapy. Have had some distinct back pain for about 4-6 weeks. First I thought I bashed it and was waiting for bruising to appear. Nothing came and pain is constant, worse when I press on it. It’s in a few areas of the ribs below the shoulder on the same side as mastectomy and lymph node removal. My mind has gone immediately to disaster and worse case scenario 🤦🏼♀️As soon as I phoned my breast care nurse on Friday they booked me for a bone scan. Which I wanted and now I have it I am terrified.. this is truly crappy. I had a previous bone scan about 6 months ago and all looked good and then had my operation and then chemo. I keep trying to tell myself... would I get bone mets even though just gone through chemo?? Any wisdom out there. Sorry to hijack your thread. Desperately seeking reassurance

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited May 2021

    LittleBungle - is it remotely possible you have some swelling back there? It is possible that some muscles were pulled or ribs bruised during your surgery or that you have a seroma or lymphatic fluid build up all of which are painful and could definitely present as you describe. Just offering some other options. Glad your team is being careful and scanning you just to rule out other causes. Prayers for a clean scan and some relief from the pain. Hugs.

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  • LittleBungle
    LittleBungle Member Posts: 6
    edited May 2021

    Hey Rah 👋 thanks for responding

    Well the mastectomy was in October so I thought I’d have had pain like this before now, if it was going to come. Just driving myself crazy of course. Just hoping that I have the results back quickly and that they are all clear and lovely. The pain isn’t that bad, just constant and strange. Not muscular at all. Argh it just feels so ominous.

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