Diagnosed metastatic and began treatment 11/2018. Gleason 9, PSA 200. Still have prostate. Only treatment is Lupron since 11/2018 (started Xgeva 2/2020).
Yesterday my PSA was 0.5, a new low.
But my ALP, after rising during the first year of Lupron from 50s to 82, has dropped over the last year to 31 yesterday (up from a low of 26 last blood test in November 2020).
Does anyone have any thoughts on why ALP has dropped so much?
You have double good news here...(1) ALP bounce after starting Lupron happens in some men. The likelihood of longer survival is higher in men who had ALP bounce compared to men who did not have ALP bounce.
(2) Fall in ALP to 31 is excellent...it indicates that just minimum day to day normal repair process is going on. The chances of bone mets with ALP 31 is extremely rare unless you have Osteolytic type bone lesions. Men with high PSA in your case 200, normally do not have Osteolytic lesions.
So Celebrate this victory in battle against PCa. You have good luck.
Thanks Pal. In late November 2018, just as I was starting Lupron, my mets totalled at least 3 and possibly as many as 10. Since Lupron began, no radiologist has mentioned more than 3 in the reports. I hope to have scans midsummer and get a better grip on things.
I appreciate your input.
Its not just the number of bone mets..its also the quality and location of bone mets which matter.e.g. Bone mets which cause pain are certainly worse than bone mets which do not cause pain.
As for location, thoracis spine mets are riskier than lumbar spine mets because spinal cord ends at L1 but runs thru entire thoracic area.
Also, Lytic type bone mets are more problematic than Blastic type bone mets as risk of fractures are higher with lytic type mets.
I have had no pain that I can definitely say was from a met. Occasional mild pain that comes and goes.
3 major mets: one inside right hip, two on spine which I will look up exact location for.
I have no idea of the type but will find out. I only began looking into this issue because of many of your posts on the subject the last 4-5 months.
Play the lottery, your on a roll of good luck.
Does anyone have any thoughts on why ALP has dropped so much? Answer: you are on Xgeva. Your bone turn over is reduced or maybe stopped. (I am not a doctor but Xgeva is responsible.)
You probably can't use your ALP numbers to monitor your bone metastasis as your are on Xgeva. That is only my opinion. I don't really know to be honest. Maybe that is still good if your ALP numbers are stable. My ALP number is 55 now. Minimum was 49. i have no bone pain. Very similar to your symptoms.
What are your current ALP numbers? How much did they move (changed)?
They're still right at 30.
One needs to read ALP number carefully. If your liver enzymes (AST, ALT, Bilirubin) are in normal range, then ALP reflects correct amount of bone metabolism and it can be trusted. If your liver enzymes are elevated, ALP number does not give correct information. In such a situation, you will have to Bone Specific ALP to know precisely bone met activity.
Yes, I've followed your excellent posts on this subject. And my liver enzymes are excellent.
If you are on Xgeva with a good liver, can you trust that your stable ALP numbers reflect that your bone mets are also stable? I am not on denosumab partially because I was afraid that with denosumab I would lose the ALP as a tool to monitor the stability of the bone mets? The other reason that I am not on denosumab is that I don't have bone pain. Maybe later I will take prolia every six months. (Prolia is what they offered me here in Sydney in a Kinghorn cancer centre but I refused. They didn't offer me Xgeva.)
Bone ALP tells about how much repair of bones is going on at a given point of time. Also called "Osteoblastic activity" High ALP means there is more than normal bone repair activity is happening. Why high repair activity ? Because bone mets corrode the bones and this triggers repair activity. ALP is an enzyme which reflects extent of bone repair happening.The bone builders meds and infusions initially accelerates bone repair activity which can show in form of high ALP. But as the repair process stabilizes, ALP falls back in the normal range and stays there.
I'll have to check, but mine may have risen on Lupron only, but began to fall before beginning Xgeva. I'll have to double check that, though.
What is a more sensitive way to determine bone mets activity? ALP test values monitoring when you are on Xgeva or when you are not?
I am not on bone medication as I thought (rightly or wrongly) that taking Xgeva would minimize the possibility to see the bone mets activity. I don't have bone pain. Bone pain alone has an indicative value about bone mets.
All the regular scans such as Tc99 bone scan, CT scan and MRI...all of these in fact measure degree of osteoblastic activity going on at various spots. The osteoblastic activity is a vague ,indirect measure of possibility of bone mets.. These traditional scans are NOT specific for bone mets. The scan which is specific and most accurate is Ga68 PSMA PET CT because this scan Does NOT measure osteoblastic activity. Gallium 68 isotope goes and attaches to PSMA (membrane) on the surface of true cancer cells. Hence it is the best way to know about bone mets. An example: I had bone scan which showed 3 dark spots in total. Then, I got Ga68 PSA PET CT...it showed only one out of those 3 spots lighting like a bright orange color spot. This orange lit spot was a real met whereas the other 2 spots seen on bone scan turned out to be an old scar tissue and a degenerative area. (not real cancer met)
I forget. Is the Ga68 scan the same as Pylarify? Or different type of PSMA?
I am just curious about you opinion about this clinical trial offered to my consideration: clinicaltrials.gov/ct2/show...
Have you done any Chemo? I found your profile while searching for diagnoses similar to my dad’s. Doctor has him doing hormone therapy and we look to do chemo in the near future. His PSA dropped from 277 down to 0.11 in the last few months since beginning treatment. We aren’t sure when he should begin chemo
I am giving you a very quick reply:
urotoday.com/journal/everyd...
Ones your father is deeply castrated you should start chemotherapy. I believe it is about 2 months after starting ADT. But you can double check in the link from Dr Fred Saad. Don't miss that chance to start early chemotherapy. Chemotherapy is most effective upfront.
Have a great day. I am happy that you care for your father.
This is a helpful article, thank you!
I am very happy to help you.
One more link about chemotherapy:
Very detailed explanation, but he didn't recommend wearing ice gloves and booties, or using ice chips for tongue, although he addressed neuropathy. Do you know why he wouldn't mention those things that are widely used by patients? Thanks
During my chemotherapy nobody recommended ice.
They are understaffed and have enough trouble doing their essential job.
They don't really care. Actually they would go really mad jumping over ice etc etc they simply don't have enough time for icing people.
Believe me they had problem even doing essential tasks.
They couldn't organize the distribution of the sandwiches to us.
They are really overworked. Too many patients and not enough time.
Hope your hospital is better.
No, I have never had chemo, and no ADT except Lupron. No Zytiga, Xgeva, Nubeqa, or Erleada.
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