Bone mets occurring during chemotherapy treatment for TNBC?

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Renae64
Renae64 Member Posts: 99
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I am very saddened by what I thought was early breast cancer in April ended up being in my bones during my 6 month chemotherapy treatment. Bone scan was not done in the beginning as my lymph nodes were negative. I feel angry that bone scan wasn't done earlier as I was having trouble walking before my last chemo. I am 48 years old, anyone out there who can offer their experience.

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  • Angela-R
    Angela-R Member Posts: 273
    edited January 2013

    Hi Renae

    Sorry I have no expertise to offer, mine are not bone mets, but I wanted to send you a hello. Crikey you have every right to be angry. What a rotten thing to happen. I know there are specific bone mets topics on this site that seem quite active. Someone there may have had a similar experience. There is also the Australian Sisters that I post to quite often. They are a great bunch of women, very supportive of each other, and they may also have something to offer.

    Best wishes

    Angela

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  • Renae64
    Renae64 Member Posts: 99
    edited January 2013

    Hi Angela, I live in Melbourne too, Clifton Hill. Maybe we should talk on the phone? It is rather lonely bring TNBC with mets. Xx

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  • midnight1327
    midnight1327 Member Posts: 1,475
    edited January 2013

    Renae, one of the ladies on  the Ausy  site to talk to is Chrissy, she is a lovely lady and full of info. but they all pretty  have alot to offer in info, But why i say Chrissy, she does  stage 1V bone mets and there could be another lady as well, not sure,

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  • Angela-R
    Angela-R Member Posts: 273
    edited January 2013

    Happy to chat. I'm in Bentleigh. I agree Chrissy is amazing so I'm sure she will have heaps to offer.

    I'm happy if you want to send me a private message with your number.

    Cheers

    Angela

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  • aeshowalter
    aeshowalter Member Posts: 5
    edited January 2013

    on Dec 27th i saw my primary care doctor. he checked my thyroid (which turned out to be low) and also did comprehensive blood panel while he was at it.  much to my surprise, the alkaline phosphatase came back too high. how weird, i thought. it really didnt cause me any concern. my prim care doc didnt know what to think of it.  

    so he emails my onc with the results and the onc says to retest and do a bone specific alk phos test. just got the results back and my bone alk phos is also elevated!

    needless to say, i did some online and research and what i can decifer is that these results most likely indicate that i have bone mets! what is so puzzling is that i dont have any bone pain. i have joint pain, but the onc said that's from the Arimidex (and being in menoppause- i had my ovaries removed). ugh.

    so tell me, did you have the alk phos test done as well? were your results elevated?

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  • bevin
    bevin Member Posts: 1,902
    edited January 2013

    Dear Aeshowalter, Dont panic yet though I know how concerning this can be. Elevated Alk Phos can be from other things too, like arthritis changes in the body, some medications can make it rise, general inflamation, degenerative disc issues, etc. My Alk Phos has been elevated for several years now.  I've had bone scans and CAT scans and no bone mets.

    Talk to your doctor, they will likely repeat tests and perhaps order a bone scan.  Please just know other and many benign issues can cause this level to rise.

    Good luck to you, I hope its nothing for you too and just an anomoly.

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  • aeshowalter
    aeshowalter Member Posts: 5
    edited January 2013

    thank you bevin...i was freaking out a little bit! i definitely have some arthritis-like symptoms. being in menopause (due to ovary removal) and being on the Arimadex. i didnt know that arthritis could make the alk phos elevated. this makes a lot of sense to me! 

    at any rate, my bone scan was today and i will get results on mon or tues. 

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  • anamerty
    anamerty Member Posts: 195
    edited January 2013

    I may have bone mets too, and waiting for bone scan.Funny that I had my bmx aug 27th and something showed up Dec 7th so less than4 months from dx oncologist suspects mets to my 3rd rib right side(where my cancer was) as you can see from my info stage 1 grade 3 tn clear lymph noded, so why is this happening already?I had chemo also. but what I wanted to know, how high does your alkaline need to be elevated to cause concern? Mine as of oct 12 when it was done was 124 where the scale says should be between 42 and 116, is this really high?

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  • bevin
    bevin Member Posts: 1,902
    edited January 2013

    I'm not sure if this is accurate but I have read 3x the upper normal limit is worrysome.  So I'd say 124 is not too high.  Good luck to both of you. I hope these are not mets.  Will send wishes for strength as you wait for results.

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