Is it possible to continue to develop but me mets while maintaining stable low end alk phos levels? My MO seems 100% certain I cannot have new bone mets because the alk phos level is stable and low 60’s to 70’s. However, the fact remains that many scans showed no lesions and now all of them do. Appreciate any input.
Alk Phos and bone mets? : Is it... - Advanced Prostate...
Alk Phos and bone mets?
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joekaty
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It's unlikely that your ALP would be stable if your mets were not stable, but it is possible. A better indicator is the bone-specific ALP. Here's an article on the subject.
tandfonline.com/doi/pdf/10....
And a quote from the article:
In 1976, Killian et al. ( 2 ) described a simplified method for measuring total alkaline phosphatase and its isoenzymes.
Using these methods Wajsman et al. (3) reported on alkaline phosphatase in 357 patients from the National Prostatic Cancer Project (NPCP), all with proven bone metastases. Three hundred and five had elevated total alkaline phosphatase levels-mainly owing to elevation of the bone isoenzyme fraction. Fifty-two had a normal level despite widespread bone metastases. However, of the 52 patients with normal total level of alkaline phosphatases, 22 had abnormal high levels of bone alkaline phosphatases, indicating a value of this isoenzyme to indicate extensive tumor load of the skeleton.
When you say your scans showed no lesions, what kind of scans were they? Also, did you have any pain before and is it better/worse recently?
joekaty in reply to
When I was initially diagnosed in August I was hospitalized for 3 weeks bc it had already metastasized to my bone marrow- though multiple CT scans showed no bone lesions. After rounds 6, 8, and 9 of taxotere I had CT’s and one bone scan. All showed “diffuse extensive lesions” the last one said throughout appendicular and axial skeleton. My pain has been very high. I just had my baseline morphine level increased again to 60 mg per day and still have to take 3-4 norco for breakthrough. Before this I never even took Tylenol. The pain is intense. Very much appreciate your responses.
Since you said it was in your bone marrow, have they ruled out Myeloma which can mimic PCa in the bone marrow?
joekaty in reply to
Yes! That was in the initial differential diagnosis diagnosis when I was admitted to the hospital, as was lymphoma. When I was stabilized they biopsied lymph nodes and bone marrow. My marrow had four “dry taps” as the marrow had been overtaken by cancer. However, lymph node and and bone core biopsies showed positive for prostate adenocarcinoma cells. My prostate was barely enlarged- just irritated looking. They were never able to biopsy my prostate because I had developed a bleeding condition due to the bone marrow involvement and every time they even pricked me They had trouble stopping the bleeding- about 35 blood and plasma transfusion.
:0 Wow..
Yeah, it was a pretty horrific experience. 50 years old, no symptoms pointing to prostate cancer, went into hospital when I woke up one day with a swollen ankle and peeing blood with a little urine in there. Ended up with an 18 day stay, much in ICU, and almost constant blood and fresh frozen plasma transfusions.
joekaty in reply to
Appreciate your responses!
OK good. I asked because this apparently can be a difficult diagnosis and it is possible to have both at the same time. There's information online about it if you do a search.
joekaty in reply to
I will definitely check that out. Everything about my presentation has been weird so maybe there is something they’re missing. I received a call last week that the hospitalist following me during my my 18 day stay at diagnosis was doing a case study on me. I am holding out hope that the weird onset could lead to an out of the box treatment.
in reply to joekaty
Hopefully they can figure out why your pain has gotten worse. Let us know how things go. Hoping for the best for your treatment.
Another reason I asked is that Multiple Myeloma patients often have lower Alkaline Phosphatase levels than patients with osteoblastic bone lesions (PCa).
Dr. Sartor tells me that there is not a strong 1 to 1 correlation between alkaline phosphatase levels and prostate cancer.
It will vary from patient to patient.
Ok, thank you for the response. Not sure what to think at this point and feeling lost.
You need to do an Axumin or gallium 68 pet scan. Those are the most accurate.
What are the scans you have done?
What is your Psa level? What is your Psa trajectory?
Why is your doc not trusting your scans. There must be a reason. Make an appointment to find out. Bring your spouse with you.
PSA trajectory: diagnosed August 12th, 50 years old, woke up peeing blood, went to ER. PSA 556. August 24th, in ICU still PSA was 258. Had been given degarelix, casodex, and then infusion of taxotere. Was in critical condition due to bone marrow involvement. Receiving transfusions of blood and fresh frozen plasma multiple times per day. Was in condition called DIC "disseminated intravascular coagulation" resulting in profuse bleeding. Released from hospital on 28th and continued taxotere at local oncologist every three weeks. September 27th PSA 68. Has continued to go down but after 9 rounds of chemo was never undetectable. Chemo was just discontinued and PSA last week was 1.4.
November CT and January CT said "widespread sclerotic lesions" .These were after 6 rounds of chemo. Feb CT (after 9 rounds) from MDA said "there is diffuse sclerosis in the bones, seen for example in the bony pelvis" and ""thee is also multiple sclerotic lesions in the vertebral bodies". The bone scan same day said "diffuse increased activity throughout osseous structures may be related to prior extensive bone marrow involvement" and "subtle diffuse increased activity throughout axial and extending into appendicular skeleton. no suspicious focal sites of activity within osseous structures".
However, while hospitalized for three weeks at diagnosis, with many CT's, they never showed or made mention of any type of lesions. The only thing I saw on one was "vague lucency, not appearing aggressive".
I had extensive nodal and marrow involvement, but had no tumor so no Gleason score. Oncologist said based on pathology he would compare to a 10.
He does not believe in bone scans because he says it is difficult to tell the difference between unseen bone involvement that is now healing and therefore appearing on scans now, and new involvement. His belief that it is not new is based on my other improvement (lymph nodes have all but disappeared, blood work appears good). My wife and I have had multiple conversations with him leading to no concrete answers. I thought it would help speaking with the physician at MD Anderson but when asked the same questions all we were left with was "he will go back and review old scans again and discuss with colleagues again". Haven't heard back.
Insurance would not cover another PET but I would do it if it would offer something truly helpful. I do have six young children so if my dr is guiding me on the right path I'm reluctanct to spend a large amount of out of pocket money.
I am not castration resistant at this time nor undergoing chemo so if I was do something such as a prostate removal, this is my window of time and I don't know how long it will be. I very very much appreciate all of you who have responded and expressed support.
Are the lesions sclerotic or scarred areas or areas of active mets? It should say in your scan report. My scans show sclerotic areas of treated PCa with no active mets. I've had 3 Axumin scans that have had this result. Dr. Myers had me focused on healing these areas through vitamin D supplements and estradiol patches.
Ed
January CT said "widespread sclerotic lesions" . Feb CT from MDA said "there is diffuse sclerosis in the bones, seen for example in the bony pelvis" and ""thee is also multiple sclerotic lesions in the vertebral bodies". The bone scan same day said "diffuse increased activity throughout osseous structures may be related to prior extensive bone marrow involvement" and "subtle diffuse increased activity throughout axial and extending into appendicular skeleton. no suspicious focal sites of activity within osseous structures". Thoughts welcome, appreciate your comments, at a loss.
Sclerotic just means scars, you're gonna have scarring where the cancer was, I take the phrase "no suspicious focal sites of activity as a good thing. I'm not a doctor however and I would ask for clarification from your medonc or radiologist who wrote the report.
Your Medina needs to reach out to the radiologist for clarification. The second part of that sentence where it says may be related to prior extensive bone marrow involvement seemed positive since it says “prior”. In any case I would push for an Axumin Scan, it’s the most sensitive and the latest scan available.
Ya mine too I have BCBS they seem to be the only insurance company that doesn’t recognize it. I’d tell u how I got it done but it’s a long story. It is a really expensive test so I would think twice before paying out of pocket. Maybe just go with next best thing that insurance covers. You might want to ask Sartor about doing a liquid biopsy and see what he says - blood test that can detect active cancer. BTW Sartor is my doc too now that Snuffy has retired. I go to see him for my second visit next month.
ask about newly approved (just a week ago) Apalutamide and combining lupron and zytiga at the same time is supposed to be much better than one at the time. I am in a similar boat -- not sure what to do -- blind radiation of pelvic area or wait till it shows up on scan? anyone know which is better?
Curious to see answers to this. My understanding is that apalutamide and Zytiga were for castrate resistant- which I am not yet- despite extensive metastasis. Weird place to be in when I should be enjoying not being castrate resistant yet but it is also a barrier to both treatments and trials. Hmm..
you can do Zytiga and Lupron now even though you are not castrate resistant yet and you probably should from what I've been reading
Ok good to have something else to think about and be proactive. I am on Lupron and Xgeva but not Zytiga. Thank you
I go on Medicare in July so I’ll get my next scan after that
This is Joe’s wife, looking through old posts...so just FYI now know for certain that Alk Pho’s does not have to be elevated when lesions are developing. Just had a whole huge growth of new lesions and his level never got above 90. Calcium was never elevated either- in fact he is currently on supplements because he was critically low. Just figured I would pass this additional info on in case anyone else is searching posts for info on alk phos levels and comes across this old one.
Mine just went from 82 to 92 -- I suppose that isn't good. I had no visible mets as of 6 months ago. I guess you can have bone mets at any level.
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