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My bone scan came back negative! I thank all of you for your support, and wish you all the best. I'm still planning to chase down why I am having pain on my ribs...Best to all!!
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Hi all,
Not sure if anyone is still awake, but I've been having a little mini freakout and wanted some info..
I am 50.. I had stage 1 er/pr+ Dec 2016. I had a low onco score (13) and did radiation and then started tamoxifen. Did that for 5 months and it messed with the ovaries, so they came out October 2017. Started Anastrazole Jan 2018. I've been feeling off, complaining about a weird sensation in my left arm/leg, then I started having these weird dizzy moments and more recently I feel like I have this bone pain in my right arm; then last week I fainted without any warning. My doc was out, so I saw this other guy and he looked me over and said I seemed fine, ordered blood work, told me I couldn't drive for a month and said to check back in with my regular doctor then. He called a couple of days later to go over my blood work.. he says that my alkaline phosphatase is high (138) and that looking at my blood work history, he could see that it had climbed 20 points since my last blood draw at the onco two weeks previous. A year ago, it was 87, is this kind of climb normal? What are the typical numbers for bone mets (he said he did an additional test to check my liver and it is fine) my calcium was a 9.9 if that makes any difference.
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Hi alcoolal, the arm tingling and bone pain you are describing can be caused by higher than normal alkaline phosphatase readings as it also pulls calcium from your bones. It would be a good idea to see your regular doctor and discuss ways to normalize this reading.
One of the se of Anastrozole is light headedness and dizziness. It is the same for Letrozole. Hang in there as it will ease back to a more manageable level once your body gets used to it.
Love n hugs. Chrissy
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Hi Chrissy,
Thank you so much for responding. The dizziness is not caused by the anastrozole because I've been taking that since January and it only started up a couple of months ago. Also, what do you make of the unexplained fainting? And why would my reading go from 87 to 138 - that's a big jump, no? The bone pain is new.. it's just one spot on my arm.. it's not constant, it comes and goes, but it's not like the usual aches and pains I have had (many) in the past. My doc called yesterday and said I need a head ct, so I guess I'll start there. Thanks for any input.
Happy Tuesdayxx
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side effects don't always show at the beginning. Sometimes they come on later.
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IAlcoolai - Im glad your doctor is checking things out. Jead CT and maybe bone scan would be logical.keep us posted
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hi there alcoolal - I am really glad you’re getting yourself checked out. It is scary to see one’s own lab work showing disconcerting results
My understanding of alkaline phosphatase is that it is a measurement of liver enzyme activity (there are also ALT and ASP) is one of the ways that we can see what is happening with the health of our livers.
Higher alkaline phosphatase could indicate an issue with the liver or it can be indicative of bone diseases (from my understanding- related to an increase in bone production rather than a decrease).
It will be good to have further medical investigation to get this assessed.
I like this site to read about lab tests and how to interpret them https://labtestsonline.org/tests/alkaline-phosphatase-alp
Sending you tons of good vibes and positive juju. Hopefully you can take some time to breath laugh and get fresh air in the midst of it all.
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Hi Everyone,
I'm so scared right now. I should change my user name - back - to "scared67" which is what it was before...as I never stop being scared.
Today I found out that my MO wants to do tumor markers at my 6 month follow-up - which is next week. I don't understand why she wants to do it - now. Because the last 2 times - it was once a year.
My markers were normal last time. But, maybe she didn't like that they are up by about 1.4 point???
I think they were 11.0 in 2017 and 12.4 this year. But, I thought markers were supposed to fluctuate?? And, I don't know WHY she didn't tell me at my last appointment - that she was doing markers at the next one???
I almost feel like just cancelling the appointment - because this alone is taking years off my life.....
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Dancing Elizabeth:
She is being thorough. I do the same with my thyroid tests. If my TSH goes up, I test again a little sooner so I have a better idea if it's an upward trend or fluctuation.
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Thanks WC.
But, I don't know why she didn't tell me that at my last appointment. Because that scares the cr^p out of me - that she feels she *needs* to do this test. She didn't tell me that I would need to do this - only 6 months later.
All she told me - was that I "graduated" to seeing her every 6 months instead of every 3 months and that my labs looked good. Nothing about them being suspicious....
So - now I freak out...but...nothing new there - always looking over my shoulder because of this disease!!
EDITED TO ADD: MO just emailed me that tumor markers "are done every 6 to 12 months". I still don't want it done. Oh well...thanks everyone for listening to me go crazy!!
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DancingElizabeth,
I love your name! Please don’t change it back. I bet it it has a positive influence on you (how could it not?) even if you don’t always feel like dancing.
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Thanks Sara!!!
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DancingElizabeth, believe it or not, this could actually have nothing to do with you! Maybe your MO just saw a patient whose TMs were unexpectedly up and she wishes she'd tested them earlier. Maybe someone came in with no symptoms and turned out to have a major problem. [That happened to my MO]. So she's projecting on to everyone else.
We forget the doctors are people too. . .
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And DancingElizabeth, I can tell you that a 1.4 difference in CA 27.29 (the tumor marker I am familiar with) is nothing. Nothing. Really.
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mine doesn't do tm. Says it's unreliable. I never questioned it. I figure i watch for symptoms not resolving in 2 to 3 weeks and go in. Finding something sooner doesn't increase your survival.
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My MO feels like its another piece of information to help tell a story. i like getting them done. The more informarion the better for me. My TMs wobble from 15 -21. As I understand, Only if they're out of normal range and show an upward trend above normal is there reason to be concerned . Good luck. I hope all turns out well.
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Thanks Everyone...that really helps!!! I guess I'm just feeling *scared* about my appointment this week. Have had a lot of anxiety about this...
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My CA 27.29 has shown a steady increase in the last five years. In 2013 it was 27.1 and last month at my annual onc visit, it was 38.3. In the intervening five years, it has only gone up, not back down at all.
My on never said anything about it, maybe because it's still within "normal" (just barely). I just noticed it because they started putting charts and test results online, and I could compare the last few years.
I'm not one to call my dr without due concern, so I haven't done that. Would you?
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My understanding is normal is normal. Example, when I had ovarian cancer it wasn't just a little off - high end of "normal" range for CA125 is 35 and mine was almost 1000.
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Hi
Heads up on the markers make sure you get regular imaging.
Went from 36 to 108 now liver mets no imaging for almost 2years. I was told markers were fine!!!!! No imaging nessecary!
Both should be checked! Always!!!!!!
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Sorry one more thing trust your gut!!!!!
With cancer the only piece of mind we get is through vigilance.
Do not regret not demanding it you deserve the best treatment possible. Get a second opinion if they dont think its nessecary.
😊
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Hi all, I was diagnosed at 35 with stage 3 IDC. I did all the treatment and then some. I'm on OS and an AI. For about 2 years I've had back problems. I had an x-ray and MRI and it all showed fine. For the past 8 months I have had hip and thigh pain and much worse back pain. I know I have problems with sciatica, that happened long before cancer. But the hip pain is pretty bad. My blood work looks great. I am having a MRI next month. I am wondering if anyone else had normal blood work and this kind of pain. Did it turn out to be something other than cancer? Thank you!
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Hi Metoo, you may find that the AI is making arthritic pain much worse as it has a tendency to do that. I've had both knees replaced due to advanced arthritis as I was on an AI for a number of years. Hopefully this eases your mind a little.
Goodluck with your MRI and do please let us know how you get on.
Love n hugs. Chrissy
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hi MeTOO, I had similar issue
Pain intensified over 8 months or so.
My hip, was so bad I thought I broke it. I could barely walk. I had an MRI and emergency surgery the same day by the neurologits that afternoon. It for me was not cancer but a VERY compromised and compressed spinal cord from two herniated discs. In words of neuro, " I was in trouble ".
They did spinal cord decompression and also fixed the two discs.
So telling you this as it can be many other things and I am glad you are having an MRI.
Good luck! Praying for you.
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HI
I'm currently in the land of total anxiety. I just got a call from my GP that after running my liver enzymes twice they are still elevated. In addition to that my ammonia level is high which can indicate liver function problems as well.
Im waiting for a call to set up u/s and to see a GI. Doc.
Is this indicative of mets? She was asking me lots of questions about the breast cancer. Im at work and so distracted and nervous. Help
Edited to add....they are sending over in the morning for an ultrasound of my abdomen. They aren't wasting any time and that has me wrecked.
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Thank you all for the answers!
she will have the bone scan tomorrow and i hope the results is on our side!
Happy thanksgiving to everyone
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Tangandchris, deep breath.......hold it........now let it out slowly. The urgency is not necessarily about the possibility of mets but about the liver function itself. There are many causes of liver problems, not just mets so please try to not worry yourself to distraction until you have some results. Once you have results you will be too busy doing what you need to do, for whatever reason, that you won't have time to worry.
Deep breathe and try to relax a little, you got this.
Love n hugs. Chrissy
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Thank you Chrissy.
Im getting dressed now to go for the u/s.
❤
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Thank you bevin and chrissyb, I'll let you know when I have the MRI and get the results. Happy Thanksgiving!
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Dear friends,
I thought of posting in the "not diagnosed with a recurrence but worried" but I'm SO worried I might have bone mets... I think I should just post here. I've been lurking for a few weeks, after having been gone from this site for several years, trying to just move beyond this and focus on my girls (Originally diagnosed in 2012 - see more info below).
I'm sitting here this early morning, about to get my girls up for school (4 yo and 10 yo), and then I will be driving two hours for an appointment at Univ of Michigan for a clinic appointment. I feel so sad and hopeless. I just thought it was time for me to write and seek support from you dear people. We moved to a new home (same town) in late September, and in the midst of prepping our home to sell (beginning in August, my husband herniated a disc and was essentially out of the packing, moving, renovating, unpacking game until now - he had surgery three weeks ago. I ended up doing it ALL. And subsequently hurt my back as well. Many times over those long weeks, after putting in a new kitchen floor (!) or carrying too many boxes, etc., I could feel the back pain creep in. Fiinally I started pyhsical therapy at my husband's urging- we can't BOTH be down for the count! I've been in physical therapy now for over a month and I'm not really getting any relief.
I know when I tell that story, it absolutely sounds like a simply injury. Only my symptoms have really changed in the subsequent weeks and seem to be worsening. Earlier I might get a day of relief, but now it's everyday. I currently have a nagging, unending burning sensation in my tailbone. I have tingling in the toes on my left foot, and I have an occasional sharp twinge in my mid back vertebrae. I also feel a sensation in my sternum (not pain, really, just discomfort?), and an occasional burning sensation in the upper verterbrae, neck area. Oddly, when I sleep, all of these symptoms go away. I wake up with no pain/discomfort, but as soon as I get up they start in again and are there all day long, often worse by the end of the day. (Or maybe I'm just tired of it all by the end of the day.) Oh, and most recently - no pooping these last three days.
My crazy-worried thoughts tell myself this: I had bone mets all along - and the intense physicality of single-handedly moving our family just broke what what already weakened by bone mets, They were there - with no symptomology - and I overdid it and now vertebrae, coccyx, sacrum (?), are fractured, etc.
Is that a possibility? Can anyone offer me any wisdom or perspective? I don't have any scans scheduled yet. My onco wanted me to start with my PCP and an MRI, because they thought from my story it was injury induced. Well now these injuries don't feel the same - they feel ominous. (Burning tailbone and the rest???). I asked to see my onco first and today is the day. I am terrified. I don't know how to live with this. I don't know how to not live without feeling in utter despair from my girls losing their mother. I don't know that I can do this. Any help is welcomed and so appreciated. Thank you, thank you, thank you. (Currently sobbing at the keyboard.)
(Edited to say: maybe I'll copy and post this message to the "worried and undiagnosed" thread - I guess that is a more appropriate place. Blessings and peace to all of you lovely sisters.)
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