Alk Phos Rising- Your Experience With This

Jons_girl

Hi Friends:

I’m going to post here too since nobody is commenting on my other post yet.

So I got recent blood work results back. And some of my numbers are higher than normal.

My Alk Phos numbers keep going up.
Starting in 2017 at my cancer dx timeframe my number was 70 then May of 2020 78 then sept 2020 jumped to 92 then Jan 2021 jumped to 102. Feb 2021 jumped to 114 and April 2021 110. It's gone up quite a bit since my diagnosis and surgery

I had my alk phos isoenzymes tested too. That test is supposed to show where the elevated alk phos is coming from. It showed it's coming from my bones not from liver. Liver alk phos is normal

So I'm a little concerned. I've been having joint/bone pain for awhile now. I think my MO thought this could just be menopausal pain. I chat with my MO this next month. And I may ask for a bone scan or X-ray? I’m not sure what to ask for. But my pain isn’t going away. I’m only 53 and very active. Push through the pain.

I am not on a AI inhibitor, haven't had rads or chemo and no tamoxifen so I know the pain isn't from meds or anything like that

Also my calcium has jumped from the 9s to now 10.2. So I don't know if that's concerning.

It's interesting that I have osteopenia and my calcium blood level is high. Strange.

Just sharing because I'm concerned. Maybe this is nothing to be concerned about. I've never had my bones checked other than a dexascan.

Thank you in advance for sharing your experience with this.

Melbo

I have had a similar experience, but without the pain. My number started rising months after finishing chemo - it went above normal in Feb and has risen steadily since. However, still not all that high (less than 50% over), and blood work yesterday showed it actually dropped a tiny bit, although my ALT is now borderline high. I spoke to my MO yesterday and he agreed to do the fractionated test to show where it’s coming from (still waiting for results) and liver ultrasound. He would have done bone scan as well but I decided that with no pain it didn’t seem like the likely culprit.

With all that being said, my MO reassured me that the tests were to make me feel better and not necessary since the number wasn’t crazy high and he was not concerned about the numbers. (he said all of this without making me feel like a crazy person, which is deeply appreciated).

Another thought might be a bone density test?

Jons_girl

hi melbo: thank you for posting!! I’ve had a bone density test already. Shows osteopenia. I’m only 53. Very good health I think overall. Very active. My AST is almost over the top on high level. My ALT is good.

I wish I had done the alk phos isoenzyme test earlier. Because it’s not coming from my liver and my MO ordered a liver ultrasound which was normal. Now I know it’s coming from my bones. So not sure what test she will order next. But rising alk phos is making me nervous.

Maybe this is nothing.

I hope all goes well with your tests too!

Melbo

have you had your vitamin D tested? Mine was low and I started taking a supplement this week. My ALP dropped a bit when it was tested yesterday, so maybe it’s from the vitamin D? My ALP and ALT will be tested again in 3 weeks (I’m still getting infusions of Herceptin and Perjeta) so I will be eagerly awaiting those results.

Other than that a bone scan would be the next option for me if the test shows the ALP is coming from the bone and it keeps rising.

Jons_girl

Hi Melbo:

Yep my vit d has been tested. It’s plenty high. So it’s not that.

I hope you get answers too! Keep me posted k? Hope all goes well going forward for you. 💐

I’m thinking she may say I should have a bone scan to rule out that.

Have a wonderful day

Jons_girl

anyone else with experience regarding this??

Anonymous

I’m Stage IV with bone mets but all I can contribute is that my MO has told me that ALK PHOS rising is one indicator to keep an eye on for progression in the bones. Just confirming what you already know.

The bone scan sounds like a good idea. Hope it will rule out mets for you

Rah2464

Jons Girl - there is a thread about parathyroid in which one of the characteristics is high blood calcium and bone density impact. I don't recall any discussion about ALK PHOS along with it, but just wanted to give you a thought in a different direction.

Jons_girl

Olma: Thank you for your posting! I appreciate the info that you shared. Yeah I’m worried about this. But trying to not be worried. I can’t get an appt with my MO til the 21st. Ugh. So will see if there are any cancellations for an appt next wk.

Rah: Thank you for your posting! Yes I knew about the parathyroid thread. But forgot about the bone density impact conversation. I did have my parathyroid tested through blood and it was fine but the calcium level was high again. So I will go check that thread for bone density conversation.

Thank you both for taking the time to comment. I appreciate that

Jons_girl

thought I'd post an update.Maybe others will respond that have had elevated alkaline phosphate levels.

I'm having a dexa scan today to see if my bones are getting worse (have had osteopenia in the past). Checking this to see if rising alk Phos level is just osteoporosis related. I had the alk Phos isoenzyme test and my higher numbers are definitely coming from my bones not my liver. So if the dexa scan doesn't show a lot of change I will prob have a nuclear study done.

I'm also having my vit d checked today (calcium level jumped higher) to see if that's what's causing calcium to go up.

A little concerned but waiting for today's results.

I've been having joint/bone pain that hasn't really gone away.

Anyone with similar experience can you please post??

Thanks! Tami

KMom57

jonsgirl, i have elevated alk phos too, but no answers for you as I don’t know what’s causing it. But I wanted to jump in for moral support with your scan today. I’ve had lots of bone and joint pain too, but latest scan showed nothing but arthritis. Hope that is encouraging to you. Will be thinking about you.

Jons_girl

Hi Kmom:I'm just having a dexa scan for bone density today not nuclear study yet

Will see what that says and vit d level results

Thank you for posting! I appreciate the support! Interesting you have high alk Phos too! Yes that's encouraging So how did they find you had arthritis? What scan confirmed that?

Hope your week is going well

Tami

KMom57

Jonsgirl, I had a lumbar spine and pelvic (hip) MRI with contrast. Not sure which one it showed on (I have not seen the actual report).

Jons_girl

Kmom: thank you for that information.

My vit d test results are good. And dexascan results show some significant change in my lumbar but nothing much other than that I don’t think from what I read. So I don’t think my pain is from either of those.

I will be asking for parathyroid eval and bone scan if she thinks we need to do that.

lola12

it happened very similarly to me, but my ALK numbers were much higher than yours. Did not find the reasoning until I got a bone scan. I had a broken rib. Maybe from a sneeze. None the less, it was nothing.

Jons_girl

lola12:

Thank you for sharing your experience. I’m going to either have a nuclear bone scan or a pet scan. My onco is trying to see if my insurance will approve a pet scan. If not then I will have a nuclear bone scan study. This may be nothing but with my cancer dx in the past we want to rule out everything.

lola12

I must admit, I was scared. I posted on here often about it. You probably can search back and see them. My oncologist went right to the bone scan and this little area of rib lit up. We also have the same stage, grade and pathology. Yesterday, I had my 11th year mammogram and all is well. Please do not let the Alk number immobilize you. For the life of me, I could not remember hurting my rib and the oncologist mentioned that it could have been a sneeze, lifting a baby or box, getting out of a car, etc.

I am unsure of the pet scan, but for peace of mind, I would do the bone scan asap. I am a firm believer of not waiting, to push to get it over with, the waiting anxiety is too much and really is usually nothing. Just do it Get a copy of the disc when you leave

Lola

Jons_girl

Hi Lola: No I’m not letting the alk Phos number immobilize me. Trying not to be worried about anything right now. The pain I’m having worries me more than the alk Phos number.

I got a pet scan scheduled for next Tuesday. In my opinion that’s even better than a bone scan. Cause it looks at everything so won’t need to have bone scan and ct if I have a pet scan it sees everything.

Will see how it all goes. Hoping this isn’t anything other than menopause.

Thank you for your support.