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So scared and spiraling and need help

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I had my six month check up today. Ironically for the first time ever, everything is in the normal range. However, my ALP is going up like gangbusters. It was 110 today and it's been creeping up since diagnosed although this was the biggest jump. I was 76 last time. My NCI oncologist (or her PA more specifically) is not a bit worried. She say s it's because of my increase in weight baring exercise and I will say that has increased quite a bit in the last six months. She says it's a sign that my bones are regenerating new cells which is good. But I'm so frightened regardless. If it goes up any higher I get a bone scan. Anyway she's so confident she doesn't want me back for six months but I can't calm down. I know I'm exercising every day but I can't imagine it affecting my ALP that much. Calcium is still well within normal range at 9.8. It's a little higher than last time but I'm eating more dairy. Please help me calm down.

Comments

  • maggie15
    maggie15 Member Posts: 995
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    Hi kaynotrealname, I’m sorry your increasing ALP is making you anxious. Since the level is still in the normal range and your PA has a logical explanation for the increase a six month wait is not that long. Blood markers alone are not used to diagnose a bone condition. Keep up the weight bearing exercise and healthy diet. Try not to worry until you have a reason to.

  • laughinggull
    laughinggull Member Posts: 516
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    The value still is in the normal range. This happened to me the entire year after chemo, it was normal and nobody was worried except me.

    In your feet I would look for resources and help on living with the trauma and anxiety of a cancer diagnosis. My cancer center had a bunch of supportive services including an oncologic psychiatrist and his advice was invaluable. I joined a meditation group that I still attend today.

    Take care,

    LaughingGull

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Thank you both very much for your replies. I have a therapist and thankfully have an appointment with her next week. I have had back to back testing this month and nothing has been completely straight forward so I'm thrown for a loop of the highest proportion. Laughing Gull, if you don't mind me asking, did your ALP levels ever normalize? If so, did they figure out the culprit? I don't fast for mine and I am blood type O which I know food can elevate our ALP's significantly. Did something like that cause your's you think?

  • laughinggull
    laughinggull Member Posts: 516
    edited October 2023
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    Hi Kaynotrealname,

    The upper limit is like 130 or 150 depending on the scale used. For your oncologist to get worried, they would have to be much, much higher, and that combined with other symptoms.

    My levels were around 60 when I got diagnosed, stayed low throuch chemo, and got up when I started radiation and removed my ovaries. They have been hovering around 110 ever since, which is still perfectly normal. I also do a lot of weight-bearing exercise and all sorts of other exercise.

    You don't need to find a culprit or a root cause for something that is normal and doesn't signal any problem, but they are giving you some biological explanation that makes sense.

    In my view, many of us are traumatized by the cancer diagnosis, and that trauma shows up, in the form of unjustified (given the facts) desperation, and that feeling of spiraling down, whenever you see something that could remotely suggest your cancer is back. You are not alone. Happens to many of us, and it is not a cancer problem, it is an anxiety/trauma problem. Clouds over the sky that hide the sun rays.

    Keep with the weight wearing exercise, the healthy diet, your therapy…you are doing everything right!

    😍😘

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Mine was 54 when I started, stayed really low through chemo and then after I started ovarian suppression and AI's they started gradually going up. About a year out after chemo I've hit 110. Like you. Also, like you it seems, I exercise everyday. Anyway thank you for that. They truly aren't thinking there's an issue and nothing else is even remotely questionable. At some point I guess I will process through this and start regulating myself again. Trauma really is a bitch.

  • laughinggull
    laughinggull Member Posts: 516
    edited October 2023
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    It does sound that we are very similar cases. My "elevated" ALP numbers consumed me with worry for a long time. I even have a chart of all my ALP results during the last six years, with overlapping info on treatments started and finished, as an attempt to discover the hidden cause of the increase 😀 So I totally understand you!

    My ALP started at 60, went a bit up and down during chemo (but still low), shot up after radiation + oophorectomy (although not hugely), and stabilized lower than the peak, but higher than before chemo. In my chart I used 129 as upper limit, but my oncologist uses 150 (in which case I would have never been above the limit)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    laughing gull,

    You have gotten some great comments. One thing I’d like to add, that will hopefully allay your fears is that many doctors do not even take tumor markers! I am 12 years in to the mbc world and have never had tumor markers taken. They are not the be all and end all for many folks so if your doctor is comfortable with your current situation then I would put my faith in that. Take care.

  • kaynotrealname
    kaynotrealname Member Posts: 410
    edited October 2023
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    God bless you for providing that for my crazy, research driven mind, Laughing Gull. I can pull up graphs on my chart so I haven't made my own personally but you bet I've been looking at them there. It looks like for you, you had a year when they rose. Did you fast for your bloodwork by the way? Or blood type O? Interesting though that in the second year they started coming back down and stabilizing. Also do you know why some labs have different perimeters for measurement of this? My NCI hospital uses a normal range of 24 to 110 but that seems conservative compared to most labs. Since your oncologist uses the top end as being 150 would I measure more with that lab if they took my ALP instead of with the one my oncologist uses? Or our measurements different from lab to lab or do labs just consider some things normal that others don't. Kind of confusing…

  • laughinggull
    laughinggull Member Posts: 516
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    I never fasted before getting my blood drawn. I am going to check the upper limit from the different labs I got results from over the years, and will post here later. I guess your question is if different labs have different ALP upper limits because they test/measure ALP differently, or because they have different ideas of what the upper limit should be. Can’t speak to that, but maybe someone else can?

    @exbrnxgrl , we are talking ALP, not even tumor markers.

    I never paid attention to this until in a routine check up my PCP saw my elevated ALP and sent me to the oncologist because this was a sign of bone mets. Casually like that. My onc wasn’t worried at all and said for her to be worried, she would have to see much higher levels of ALP, and coupled with other symptoms.

  • kaynotrealname
    kaynotrealname Member Posts: 410
    edited October 2023
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    Thank you, Laughinggull, for continuing to engage with me. You have no idea how comforting it is to talk with someone about it. Or maybe you do and that's why you're still here :) I will say that my onc yesterday was pretty definitive that ALP can come from a few different sources. For some of us intestinal contribution can be huge after a meal and apparently they can be elevated up to 24 hours after strenuous exercising. Anyway if you see elevation it doesn't always mean bones or liver. I did a lot of research these last few days because that's how I try to comfort myself. I did find one person who's elevation did mean bone cancer but it was only after bone pain that they realized it. The bone pain came eight months after elevation began. Those that had elevation without bone pain thus far I haven't been able to find where mets occurred. And considering they don't make us fast, I'm not sure why they even check ALP. Everything I've read said that for that particular measurement, to be accurate, you need to fast. I did for my beginning testing simply because it was in the morning but the last three or so I haven't. They could save us a whole lot of grief if they would just insist on fasting. Or not measure it. Anyway Laughinggull, thank you for telling me what your oncologist said. It does make sense. And screw your GP for their "casual" concern when mentioning the possibility of bone mets. Good grief. I am going to retest myself in two weeks and make sure I fast and limit exercise for a couple of days beforehand to try and get an accurate reading on where I'm at. I am hoping it of course will be a much better reading.

    But if someone does know why different labs have different measurements and whether you can have a different measurement at one lab compared to another, I would love that information. On-line says 44 - 147 or 30 to 120 but my lab considers it 24 -110. On-line says normal values may vary slightly from lab to lab but that variation is not "slight" in my opinion.