HIgh ALP and very concerned. Please help

Hi Sun! In answer to your question, I don't know :) I suspect though it has nothing to do with mets and everything to do with bone loss since it's been a gradual increase over the first year since I started letrozole. If you're in your first year, bone loss would be a much more likely explanation than mets also. Even if you're not in your first year that's still a much more likely explanation. In fact out of all the people that I've read who have posted about rising ALP levels (and there have been quite a few) I think only one came back with associated bones mets and they had actual bone pain six months after their rise started. So ALP levels are not a good indicator of bones mets and I'm sure is why my oncologist was not worried. I did decide to start zolodrenic acid infusions though since I was technically osteopenia on my dexa scan. No side effects from that either although I've only had one infusion so far out of four. My next blood work test is due next month and we'll see what it's at then.

Thanks so much for coming back, Sunlover, to give us an update. With pain it was a good idea to do a scan just in case but as usual, the rising ALP didn't appear to be associated with anything but the medication. Good for everyone to be aware of. On another note my doctor said they wouldn't be concerned until ALP levels rose 2 times the upper highest limit. Hoping they've stabilized for me next scan in a couple of weeks now that I've started zolodrenic acid infusions. Hope your's stabilizes, too. It would be pretty crappy to be cured of breast cancer only to die from a hip fracture due to osteoporosis :/

For anybody who comes across this in reading, I went for my six month checkup today. My ALP levels fell 35 points and that was with only one zolodrenic acid infusion. So remember that if you start seeing a gradual increase in your ALP numbers after starting AI's that it is much more likely to be bone loss due to aging factors and not actual bone mets.

Fast bone loss from osteoporosis/osteopenia seems to be the most likely culprit with high ALP levels. My ALP levels have now stabilized well within the normal limits. I have had three zolodrenic acid infusions and my oncologist wants me to do six total now instead of stopping at four so I have three more to go. Hopefully my bones will hold steady when I'm done. Thanks for sharing, Amy!

Hi Rsviigs! Technically letrozole doesn't cause bone loss. It's the lack of estrogen that letrozole causes that can cause bone loss :) So, you're right. This is probably menopause. In fact, since I have made the original post I have seen numerous people talking about high ALP. None of them have had bone mets. It's been just aging bones every time. Some facts to keep you calm as you figure out with your doctor how you want to proceed is looking at your first dexa scan before you started taking letrozole. How were your bones then? Mine said I would have had osteopenia if I had been over 50. Secondly, is your calcium normal and not elevated? Bone loss caused by mets will lots of time cause elevated calcium levels. Thirdly how elevated is your ALP? If it's not two times the normal limit (for my hospital that would be above 220) then my doctor doesn't worry about it. Anyway I'm so sorry about this but I have learned that the one constant thing it seems after cancer is for everyone to jump at every little thing in our blood work. And a lot of time we have little things because we're still human and the body can be quirky occasionally. But the vast majority of the time there is nothing to worry about.

The first year on letrozole is the worse on bone loss. And although this isn't a popular stance and I would caution that one should definitely always let their doctors lead on treatment, whether to approve a scan or not is entirely up to you. Once you've had any type of cancer, scans for a lot of medical groups seem to be the first course of action when something out of the normal range, even slightly, pops up. Granted you have had more than one out of normal blood test so I get exactly why your oncologist suggested it. I would have had that, too, though if I hadn't researched and jumped on bisphosphonates immediately after I reached the highest end of normal and then had that second test that went above normal. I asked my doctor about them, although she wasn't concerned about my results, she agreed they couldn't hurt, I had my first infusion two weeks later which insurance completely covered, and by my next blood work six months later my ALP had dropped like 45 points putting me right back into the normal limit. Anyway food for thought and I wish you the best.