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HIgh ALP and very concerned. Please help

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I posted a few weeks ago that my ALP levels were rising and had been since starting letrozole and officially entering menopause. I just took another blood test and the high normal for them was 121. I am now at 129. So now I'm officially high instead of at the high end of normal. I don't want a bone scan but something is causing them to rise. I am slight, although my dexa last year didn't diagnose me with osteopenia it was only because I was under 50. I would have been diagnosed with it if I had been above 50. I exercise everyday but I know that bone mass is tough to put on after menopause. My calcium was at 9.8. That was higher than last time but my vitamin D3 was low six months ago and the supplements I took rose it so I'm thinking that the slight increase there was because of that. Anyway I fasted during this test and avoided exercise for 48 hours before so I know it's a real rise. I do not want a bone scan. I am asymptomatic right now and have horrific scanxiety. But I know this should be investigated. Any ideas what is causing it? Everything else appears normal although last year my thyroid levels were checked. I am not classified yet with hypothyroidism but I was significantly flirting with it. I think high APL is associated with hyperthyroidism though.

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  • laughinggull
    laughinggull Member Posts: 517
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    Sorry your ALP is still in the upper range. Still a borderline value in the upper range of normal. I also had a 129 last year. Calm down and ask your oncologist if this is a reason for concern and if an investigation with scans etc. is warranted. I am sure the answer will be no. They may check for hyperthyroidism though. And this can be a result of bone loss due to lower estrogen due to your hormonal treatment.

  • maude7646
    maude7646 Member Posts: 12
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    I understand the panic and also tend to spiral when I see something out of normal range. Actually, it was you who reminded me to trust my medical team when I had some abnormal numbers a few months ago, and if they are not concerned, I shouldn't be either. And you were right. But I think we are alike in the sense that we can see things more clearly when it isn't our own situation!

    Blood work is only a very small part of the whole picture and although we have had to learn much more about all this than we ever wanted to, we still aren't the experts so we can't always interpret the numbers in the right context. There are so many other reasons for an elevated ALP. I think you will feel better after speaking to your oncologist. I know I always do.

  • kaynotrealname
    kaynotrealname Member Posts: 422
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    Thank you, Maude. I do say that and truly believe it. It's just quite hard for me when I am on the fence about something and don't have a definitive answer. I hope my oncologist can calm my fears without a scan and thank you for reminding me of my own words.

  • sunlover08
    sunlover08 Member Posts: 4
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    Hello!

    What did you end up finding out about your increasing alp level? I’m in a similar boat and would love to followup with you on this.


    Thanks!

  • moderators
    moderators Posts: 8,285
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    Hi @sunlover08, and welcome to Breastcancer.org! Just in case kaynotrealname doesn't see your post, feel free to contact her via private message. You can simply click on her username and select the option to send a message. Hope this helps you find the support and connections you're looking for. And if you have any questions or need assistance navigating the forum, feel free to ask. Welcome to our community, and we're glad you're here!

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  • kaynotrealname
    kaynotrealname Member Posts: 422
    edited March 25
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    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.

  • malleemiss251
    malleemiss251 Member Posts: 411
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    Hi @sunlover08, sometimes dental work and arthritis can affect ALP as well. I sit at 113 - just outside of normal but have arthritis and spondylosis and recently had dental work. My onc is not concerned about it, and she is very careful - almost like a mother hen in some respects.

  • sergio74
    sergio74 Member Posts: 7
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    I also have high ALP for 2 years. It started with chemo and stayed high

    It fluctuates but always high. Dr told me it’s the medicine but endocrinologist referee me a bone scan .

  • sunlover08
    sunlover08 Member Posts: 4
    edited April 2
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    @kaynotrealname Thank you! And thank you to the others that responded as well! Due to ongoing left hip pain and an increasing ALP (highest was 123) I had my first petscan Friday per my Oncologist and i’m happy to report there was no evidence of malignancy/metastatic disease! I was diagnosed stage 2a hormone + in 12/22.

    So our assumption is exactly as you said, Letrozole must be the culprit. I started that in September of 23 and by January my ALP shot from 78 to 123. The hip pain we found is Osteoarthritis.

  • kaynotrealname
    kaynotrealname Member Posts: 422
    edited April 2
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    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 :/

  • sunlover08
    sunlover08 Member Posts: 4
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    That makes perfect sense, that you would need to see a significant rise in ALP to be concerned! I too eventually will start Zometa infusions, I just have one more surgery this month to go and starting Verzenio post surgery - then Zometa. I am on the “younger” side, diagnosed at 41 so i need to be careful about my bone health for the future. I am making sure to take my vit d, calcium citrate, exercise…praying for continued bone health throughout this journey!


    I am sending so much positive vibes for perfect scans and sending so much healthy and healing energy your way!!! Please keep me posted! ❤️


  • sergio74
    sergio74 Member Posts: 7
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    Thank you so much. I have checked my ALP for 10 years. It has been high before. The last 2 years it’s always high . I wasn’t stress out but the bone health dr asked for scan made me stressed . MO told me you can wait or have a scan . Doubling made me feel better.

  • sergio74
    sergio74 Member Posts: 7
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    My Alp was 176 in last blood work and I went for bone scan. There is no sign of bone cancer.

  • moderators
    moderators Posts: 8,285
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    We're super glad to hear that, Sergio! Thanks for posting!

    The Mods

  • sunlover08
    sunlover08 Member Posts: 4
    edited April 11
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    So happy to see that sergio74!!! You must feel very relieved!

  • kaynotrealname
    kaynotrealname Member Posts: 422
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    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.

  • sergio74
    sergio74 Member Posts: 7
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    Thank you for the response. I am sure it will be helpful for others who may have the same situation.

  • amel_83
    amel_83 Member Posts: 169
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    Thank you for the info