Bone Mets Thread

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  • Scorchy
    Scorchy Member Posts: 240
    edited February 2013

    Ladies,

    I am doing some research about survivorship--whatever that means.  And it is a general question I am asking from women of all stages.  Stage iv women generally feel as if they've been ignored in this pink movement, but I'm wondering to the extent survivors have been ignored in all of this craziness.  Or maybe they haven't.  What do you think?  If you are so inclined, please check out the Topic: Why do so many "survivors" feel left behind or marginalized?" in the Moving Beyond Cancer Forum. 

    It is something I am really interested in and I'd like to hear from stage iv voices too (because right now I only have my own opinion).  You can reply directly to the thread or PM me--whichever you prefer.

    Many thanks everyone,
    Scorchy

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Scorchy, I'd like to give my thoughts regarding your question. I was diagnosed as stage 4 breast cancer aug. 6th 2012. At that time I was lying in a bed in the hospital with a collapsed lung full of fluids and pain radiating through my spine. Many thought that at my age ,72, and the seriousness of the situation, I would not see life beyond 8 months. Today is. My birthday. And I am 73 years old and I say this proudly, as I feel better than I have in a very long time and I have been feeling pretty good for awhile. The reason for this is because, although there is no cure for what I have there is treatment. And my treatment is working. All I have to do is take a daily pill, a monthly shot, and a monthly 30 minute drip. That's it. No Chemo, no radiation, and very few side effects from my meds. 50 years ago my father died of pancreatic cancer and there was no treatment or cure. 15 years ago a sister in law died of the same disease and guess what? Still no cure or treatment. Each died 6 months after diagnosis.

    My 42 year old son died 5 years ago after being diagnosed with stage 4 melanoma. He died after 8 months of diagnosis. There was/is no cure for stage4 melanoma. And no treatment. He died. No chance of living what so ever.

    I, however, know that with my treatment choices, I can live for awhile with a stage 4 cancer and I'm pretty sure I will. And I do not feel as though I'm being ignored. I wish I had much better choices but at least I have choices. Others in my family had no choice but one.

    Happy birthday to me. It rust ill be here again next year to write the same.

    Teresa

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  • Barb312
    Barb312 Member Posts: 113
    edited February 2013

    Tree3, I am 74 and was diagnosed from the get go after having mammograms every year for as long as I can remember. I just changed onc's and should have done this months ago. New onc would have never given me chemo. Long story. I am very lucky I know because I am doing great with a pill a day and zometa once a month. Doc told me he has 3 ladies going on 10years. I go for acupuncture once a week and do some light yoga. Glad to meet someone my age. We all have things to look forward to no matter what age. Lost my husband to non Hodgkin's lymphoma 10 years and reconnected with my high school boyfriend. Right now life is good. Looking forward to watching my grandchildren grow up. Happy Birthday to you for many more years.

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Barb, thanks for responding and so happy you did. What a great story that you connected with a high school sweetheart, and are enjoying life. I feel like today is the first day of the rest of my life. My darling husband died six years go, six months before my son was diagnosed with melanoma. So the ride hasn't been easy, but I'm here to tell about it and I can sfeel that I'll be here for awhile, and happily so.

    Teresa

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  • macyhen111
    macyhen111 Member Posts: 754
    edited February 2013

    Tree3, you've never had chemo? I am asking because I am currently on Taxol and tomorrow will be my 9th infusion. My onc wants to change my chemo to abraxene(sp) because of neurothopy issues. I'm wondering if being on chemo is going to hurt me in the long run. After I get through with chemo I will be on Zometa. My onc says no rads for me.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2013

    Macy,

    There are quite a few here who have never been on chemo. I am one them. I did have rads to the met on my femur. I had no pain, but it killed off the little bugger. I have been on Arimidex for 17 months. I had 12 monthly treatments of Aredia, and now get it once every 3 months.

    Caryn

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Macy, no, I've never had chemo and had six weeks of radiation 8 years ago when I was diagnosed with stage zero and had a lumpectomy. At which time I believed I was free of cancer. This cancer was fast growing and wasn't caught until stage 4. My cancer is estrogen driven and my meds destroy the estrogen. That's my understanding, any way. I'm feeling fortunate, but realize I may have to face chemo and radiation some day. Or not.

    Teresa

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  • j1e1n1a
    j1e1n1a Member Posts: 132
    edited February 2013

    So strange how different our treatments/oncs can be. I am on chemotherapy, they radiated just about everything they could and they have me on Arimidex,Lupron and Zometa. 34 and full of all kinds of poison...is this an overkill? I really like my mo but sometimes i am scared that these things will do more damage than good. Sorry to whine...just nervous about 3rd round if chemo today...:)



    Hope everyone is well.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited February 2013

    Jena,

    Not only are the treatments different among the oncs but I think a good onc will even vary the treatment among his different patients. As a 54 year old (and some other reasons from my tx history) I don't think chemo is where I should be right now. And if my 83 year old mother 's dx was stage IV instead of stage I then I would expect her to get a different treatment plan than me. As a 34 year (mother??) and it appears that your dx was stage IV from the get go, I would expect your first treatments to be more aggressive than mine. I've done my chemo as stage III. It was very hard on me and my blood counts. Lots of neupogen and transfusions. When we get to that point it will most likely be hard on my counts again.



    I hope your infusion goes well and minimal SEs.

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  • Latte
    Latte Member Posts: 1,072
    edited February 2013

    Teresa, can I just say that I can't believe your age -you look stunning in your photo and I would never have guessed over 60!

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  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited February 2013

    Guess it all goes back to everyone is different. There was no chemo for me. Think it was there was no point in shrinking the tumor in the breast cause I had a BMX with node removal. Then rads to make sure the breast was clear.  Now just taking Tamoxifen and waiting to speak to the onc about my last bone scan

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2013

    As bc patients, we worry so much about everything. We worry if our tx doesn't resemble the tx of those we think have similar situations yet we also worry if our tx seems too generic and not personalized enough. While I do think it's good to discuss each others tx, because there are some commonalities, I hope we all trust our mo's to make tx recommendations based on out individual situations.

    Caryn

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  • j1e1n1a
    j1e1n1a Member Posts: 132
    edited February 2013

    Thanks everyone... I do trust my MO...and understand that our treatments do and will vary based on the individuals that we are..thanks for letting me whine...lol.

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  • macyhen111
    macyhen111 Member Posts: 754
    edited February 2013

    I agree caryn, My mo changed my chemo med today. I am now on abraxene, so I get less steroids and no benedryl before treatment. My blood work always comes back good so I am gonna have to trust that she knows what is best for me. She changed from the Taxol because of the neurothopy and my darkened finger and toe nails.

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Latte, thanks for the great compliment. I photograph well and always have. And I'm too vain to show gray. Even now.

    About different treatment plans and chemo or no chemo/ radiation . My mo sent me to an RO back in sept. the RO said as Long as I was in no pain, and I wasn't, and as long as the tumors weren't growing, and they weren't, then it wasn't necessary for either chemo or rad.until such time as either/ or kick in. So far, neither has. I take no pain killers at all. Not even an ibuprofen. And for that I'm very thankful.

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  • Scorchy
    Scorchy Member Posts: 240
    edited February 2013

    Tree,

    I loved reading your story.  Haopy birthday, indeed!  And thank you very much for replying to my query.  Much appreciated.

    Warm hugs,
    Scorchy

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  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited February 2013

    i just found a very hard lump on my humorous bone.  It's only on the left side.  My right one is still very soft and flabby.  Does anyone have mets on their arm.  I have my next onc. appointment Mon.

    Since I have liver mets too, I'm on Lupron, Faslodex, xgeva, perjeta, hercipten and taxotere.  That doesn't count my 2 nuepogen shots a week.  And I just found a rash around my last shot.  I think it's from the band-aid.

    Anyway, back to the arm.  It just seems like a strange place.  My Tumor Markers have dropped and my liver enzymes are outstanding.  I hope it's not progression.

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  • Mzmerz
    Mzmerz Member Posts: 1,054
    edited February 2013

    SPAM - maybe it's just a boil or ingrown hair.  Or a fatty lipoma.  But I know what you are getting at.  I have this lovely "rather large" cyst in my sinuses.  In fact, I am getting decreased air through my left nostril in just the last week, so I know this thing is growing.  I am NOT looking forward to anyone putting anything up my nose at all.  I just have the bone mets.  So my mind is saying, OMG Could this be cancer in this stupid sinus?  Well I searched Dr Google high and low.  From what I found on NIH (or something like that), there are only 4 reported cases in, like, ever!  but I sure have myself convinced I am lucky (or unlucky) number 5.  I am glad my appointment is Monday.

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Spam I may be wrong but its my understanding that breast cancer does not travel to legs or arms. Bones, ( mostly in the spine) lungs, liver, brain and I guess it can impact the neck. . But I've never heard arms. I hope I'm right for your sake.

    Teresa

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  • kayrnic
    kayrnic Member Posts: 1,708
    edited February 2013

    I think arms are rare, but it can happen. I know my cousin has a spot on her shoulder. I'm glad you have an onc appointment Monday Spam. My issues seem to always pop up right AFTER I see the onc and then I either call and become "that patient" or wait another 3 months. On an unrelated note.......HOLY CRAP you're on a lot of meds! How in the world do you do it? I'm never complaining about anything again!

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Scorchy, I hope I helped a little. Thanks

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited February 2013

    Spam sorry to tell you but I have mets to the humerus. They were so bad that I had to have a rod inserted to give the bone strength and stability.



    Tree mets can indeed invade the legs and arms but it is most unusual to go below the knees or elbows, but this also has been known to happen on rare occasions.



    Hope I didn't spoil your day.



    Love n hugs. Chrissy

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Chrissy, thanks for your comment. I didn't know that. And, nope you didn't spoil my day. Only I can do that.

    Tree

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  • Naniam
    Naniam Member Posts: 1,766
    edited February 2013

    I have cancer in both my humerus  and shoulders- it is my understanding that cancer normally doesn't go below the elbows or knees. 

    I knew something was wrong because I hurt when I raised my arm it hurt and felt I could only raise it so far. They did an MRI of my shoulder and humerus but CT scan had already shown it; MRI showed that it had grown.  

    Wishing you the best

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2013

    Tree,

    Lots of us have bone mets to the femur, so I think legs are quite a common site for mets.

    Caryn

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    I have to admit I don't know the names of my bones. I guess Im going to have to teach myself today. And I really didn't know cancer travelled into arms and legs. Why stop at knees and elbows I wonder? Why not keep on traveling?

    Teresa

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited February 2013

    Tree the bone above the knee is called the femur and the bone from elbow to shoulder is the humerus.......just remember when spelling humerus it is not funny. i.e. it has no 'o' in it. Learning the name of all of our bones is something we all do for one reason or another but having bone mets just means we tend to learn whether we want to or not.



    Love n hugs. Chrissy

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  • macyhen111
    macyhen111 Member Posts: 754
    edited February 2013

    I have a question. Sometimes I feel like my onc is not telling me everything. I think she thinks because my oldest Dd is a nurse, that I or she knows about my treatments and what the outcome is going to be. I am too scared to ask what she feels it's going to be. When I first met her after my bmx, she told me that I would live a long life with treatment. But after the bone met was found she said that she would have to stage me at a 4. Like I said earlier I read everything I can on Stage 4 bc, but I haven't gotten any answers there. My question to all of my stage 4 sisters is, did your onc give you any answers on prognosis, or life expectancy? I am too scared to ask and I won't let my family ask. Is that normal? I have no pain from my bone mets at all. The only pain I have is in my arthritic back and knees. I feel so, I don't know what the word is but maybe ignorant, or dumb , in this bc journey. Thanks for letting me ramble, maybe it's the new chemo or meds talking.

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  • macyhen111
    macyhen111 Member Posts: 754
    edited February 2013

    I have a question. Sometimes I feel like my onc is not telling me everything. I think she thinks because my oldest Dd is a nurse, that I or she knows about my treatments and what the outcome is going to be. I am too scared to ask what she feels it's going to be. When I first met her after my bmx, she told me that I would live a long life with treatment. But after the bone met was found she said that she would have to stage me at a 4. Like I said earlier I read everything I can on Stage 4 bc, but I haven't gotten any answers there. My question to all of my stage 4 sisters is, did your onc give you any answers on prognosis, or life expectancy? I am too scared to ask and I won't let my family ask. Is that normal? I have no pain from my bone mets at all. The only pain I have is in my arthritic back and knees. I feel so, I don't know what the word is but maybe ignorant, or dumb , in this bc journey. Thanks for letting me ramble, maybe it's the new chemo or meds talking.

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  • Tree3
    Tree3 Member Posts: 159
    edited February 2013

    Macy, I mentioned in an earlier comment that I had lost my son to melanoma. Well the only way I could deal with his cancer was to live in denial. Hope and denial. So when the day came that I was told I had stage 4 cancer, first words out of my mouth was how long do I have? They answered. And they were wrong. Today I believe that no one knows how long I'll live as I'm feeling so wonderful. But it is stage 4 and it can turn on us like a dime. Or at least it can turn on me. It's scary stuff, there's no question about it. I try not to think about it but I do find myself planning accordingly. I'm sure this comment is of no help, but as long as your meds are working I believe there is hope.

    OK I'm going back to study my bones.

    Teresa

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