For those with bone metastasis: what ... - Advanced Prostate...

Advanced Prostate Cancer

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For those with bone metastasis: what are (were) your ALP numbers or bone-ALP?

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Not sure if really sensitive, but after 2 PSMA PET CT, 1 biopsy and now a very detailed mri (waiting results, very long inside mri for about 1,5 hours), doctor still don't know if my husband has or not bone metastasis....

So I am trying to see if ALP numbers are related. His numbers are in the norm, and CRP 0.2. Calcium score also normal.

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46 Replies

Thanks for CRP, I think our alternative medicine is helping a lot (and thanks for additional hints!!!).

Alk Phos last one was 82 U/l (being the normal range 38-126 in this lab), one year ago at DX about the same, just in july it was 64 (when also PSA declined a lot). Bone ALP is 32.3 microg/l (on the higher end of normal range).

The point is the idea to target the bones with radiation not knowing if there are mets is not so great... specially the one in the spine (near heart). But if oligo bone mets the aggressive treatment idea of radiation + ADT + mets radiation could give him some chances...

in reply to

And now I read that Paget's disease also causes higher ALP.... complicated

Tall_Allen profile image
Tall_Allen

Did they shrink with hormone therapy?

Can any be biopsied?

in reply toTall_Allen

He had 1 biopsy to the biggest point on the ilium, but they did not find anything. It seems it is very difficult to hit and also there is always a 30% chance of false negative...

Tall_Allen profile image
Tall_Allen in reply to

Did they shrink with hormone therapy?

in reply toTall_Allen

he did not begin yet.

in reply toTall_Allen

if he begins with ADT and points don't shrink on PSMA it could mean they are not mets, that's your idea? So in this case radiation to this points would not be necessary. But is this a sure enough way to know if the points are mets or not?

Tall_Allen profile image
Tall_Allen in reply to

That's the way it's usually assessed. Since they are PSMA avid, and there is bone overgrowth on CT, they should respond to hormone therapy if they are prostate cancer. But PSMA false positives are very rare in bone.

in reply toTall_Allen

seems a logical approach. Let's see. But from literature and speaking to doctors there are more than just rare cases of false positives in bone, at least here in Switzerland where PSMA is already standard. They are not sure probably because of low signal and it did not advance over almost a year, PSA when detected was under 20 and biopsy was negative.

Would the response to hormone therapy in case of mets be quite fast, so that in let's say 2 months when radiation to mets would begin, we would know more?

Tall_Allen profile image
Tall_Allen in reply to

It is not true that false positives in bone are common with PSMA PET scans, They are VERY rare:

"Region-based analysis revealed a sensitivity and specificity of 98.8-99.0 % and 98.9-100 % for PET"

link.springer.com/article/1...

But you have to have a competent radiologist. Maybe get a second opinion from a more experienced radiologist in Germany.

in reply toTall_Allen

We will have a second opinion here in Switzerland , this time in the french part (the German doctors are already here, because they prefer to work here for lots of reasons... and in Zürich they were the first to have all these new machines). I did not say it's common, but there are cases.... you know, inflammation, or Paget's disease there are lots of possible causes for false positives. But I hope that after 2 PSMA PET CT and now RMI they will come to a conclusion.

Tall_Allen profile image
Tall_Allen in reply to

Does he have a diagnosis of Paget's disease? The Ga-68-PSMA-11 PET was developed in Germany. The people who developed it are still there.

in reply toTall_Allen

I will keep you updated. Thanks for your advice. Sure, Germany still has doctors working there :)), but here we have a real invasion of them (very appreciated, since I prefer to speak German to Swiss German, that is difficult to understand, and they are very qualified) If really needed we can go to Freiburg, but I don't think necessary. Where Germany has much more to offer is in alternative treatment clinics.

donovan0932 profile image
donovan0932

I have scan proven bone mets ,and i am asymptomatic

My ALP was 15 then month later 16.My ALK Phosphatase was54 each month .

in reply todonovan0932

very low numbers! or is it another basis? U/l?

donovan0932 profile image
donovan0932 in reply to

It is the same basis in New Zealand U/I.Numbers are low from what I read on this Forum and so far I am not getting answers from M.O I envy you the alternatives you have in Germany ?

in reply todonovan0932

I am not sure if ALK numbers are enough sensitive, but they are somehow related. I don't know which scan you did, and what therapy you are taking, since with therapy ALP can go down.

The point is to be sure about the mets, since scans can also give false positives, because the mets influences a lot the choice of therapy.

michael00 profile image
michael00

My alkaline phosphatase was at 782. It came down to 121 in last reading. I was told that is now in normal range

in reply tomichael00

it came down with therapy?

michael00 profile image
michael00 in reply to

Lupron and zytiga

Cheerr profile image
Cheerr in reply tomichael00

How long did it take to come down ? Like how many months.

michael00 profile image
michael00 in reply toCheerr

It was rising from may to September of 2018 the high was in September. Thats when i started zytiga.it was down to 121 in February 2019. And in June it was 106.

tom67inMA profile image
tom67inMA

My alkaline phosphatase was approaching 1000 after diagnosis with many bone mets. Started dropping on Eligard, and dropped faster and further on docetaxel, now in the upper 40s. Still have pain in back and ribs and hoping those low numbers mean it's healing pain.

in reply totom67inMA

it declined a lot! did you have also bone ALP checked?

tom67inMA profile image
tom67inMA in reply to

Nope, just general ALP. As I understand it, with numbers that large and known cancer, the assumption is that it's primarily coming from the bones.

Cheerr profile image
Cheerr in reply totom67inMA

How long did it take to fall within the normal range ? I am assuming it’ll take few months ?

tom67inMA profile image
tom67inMA in reply toCheerr

Yes, it did take months, and like my PSA there was a spike after diagnosis. Since that original reply months ago, it's fallen even further, now in the upper 30s, just below the normal range, and a couple points below where it used to be before cancer.

in reply totom67inMA

Fantastic! Do you still have bone pain?

tom67inMA profile image
tom67inMA in reply to

Yes, but just a little bit. After reading the studies showing a modest survival benefit for Zometa + Celebrex (which presumably apply to Xgeva + Celebrex), I got a prescription for Celebrex which got rid of most of my remaining pain. Most of what's left appears to be a side effect of the Xgeva actually.

To put may pain in perspective, I'm back to work now and still running over 20 miles a week, so at worst it's been an annoyance.

DSEE profile image
DSEE

My ALP numbers got up to over 600 even after chemo and Zytiga.

Currently down in 400’s.

EdBar profile image
EdBar

It was over 500 at dx has been running in the low to mid 50’s for quite a while now.

Ed

in reply toEdBar

and did you measure bone ALP too?

EdBar profile image
EdBar in reply to

Ya for a while I was getting bone specific Alka Phos tested which was in normal range, my local oncologist said he is comfortable with testing just total Alka Phos because if bone Alka Phos was high then regular Alka Phos would be elevated too. Then he would do the more specific AP test. This made sense since my other numbers were good.

Ed

Advo__cate profile image
Advo__cate

My husband’s ALP was close to 400 at DX and went down to low normal in a few months on ADT. We have new bone scan and tests this coming week. His PSA is rising while off of Lupron so we will see what’s next.

in reply toAdvo__cate

and did you measure bone ALP too?

Advo__cate profile image
Advo__cate in reply to

I don’t think they ever did a bone ALP.

Advo__cate profile image
Advo__cate in reply to

And his last labs 6 weeks ago showing PSA rising the ALP was in low normal range.

in reply toAdvo__cate

I see. Don't really know the importance or sensitivity of ALP

Herman_PSA profile image
Herman_PSA

My ALP was 110 IU/L at its peak and when diagnosed with PCa and my PSA was 55 with a gleason-8 stage-4 with 5 bone mets that lite up under the full body bone scan. Today, my ALP is 91 IU/L with a PSA of <0.10 as of last week.

During that same time my CRP went down from .78 mg/L down to 0.52 mg/L.

in reply toHerman_PSA

and did you measure bone ALP too?

Herman_PSA profile image
Herman_PSA in reply to

Not aware of a specific "bone" ALP other than the Alkaline phosphatase (ALP) enzyme blood test. Please explain!

in reply toHerman_PSA

well, bone ALP is more specific to bones, Alkaline phosphatases are present in many human tissues, including bone, intestine, kidney, liver, placenta and white blood cells, so a high ALP can have other reasons than bone issues.

tom67inMA profile image
tom67inMA in reply to

My oncologist specifically said he could rule out placenta in my case :-)

in reply toHerman_PSA

In other words the amounts of different types of ALP in the blood may be measured and used to determine whether a high level is from the liver or bones.

dmt1121 profile image
dmt1121

Yes, I had same experience. Oddly, when my numbers were abnormal, no bone mets. The numbers can only go so far. I think commons sense and looking at your bigger picture is more important.

Good luck.

donovan0932 profile image
donovan0932

Thats what i am trying to figure out .My Naf,PET CT Bone scan in February showed increased uptake ,some new areas .I was on Zytiga and i am confused over ALK.Phosphatase .a year ago they were over a 100 each month .The last two months they are 54 ,second reading after stopping Zytiga for a month ?I guess Zytiga reduces the Alk Phosphatase ?

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