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Arthritis vs. Bone Mets

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  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited October 2009
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    Yes, many emotions to this stupid disease.  I call it a roll-a-coaster ride.

    Gracie, do like I do.....stick your head DEEP into the sand.  Pull it out when you have to get those results.  I'm praying that all will be well and that you have arthritis...LOL 

    Jo, that's great news that your bone density was still "good."  I had one July 1 and was told by the rad place that I had osteopenia of the hip.  I had great bones while on hormones.  Then, kinda went downhill, but more so since Arimidex.  I, however, would not take a bisphosphonate for osteopenia...not telling anyone else not to though.  That would be MY choice.  But, if "something else" arises that may just change.  Then I'll have to get that darned wisdom tooth out (all wisdom teeth will be gone...where will my wisdom come from Cry) and perhaps another one because under the crown it ain't looking too good.  I sure has heck don't want extractions if I'm put on a bisphosphonate, especially one through an IV. 

    Good luck all.  I am anxious to see my onc..well for now.  When I get closer to her office I'll freak out...no I won't..I'll take a pill...LOL

  • hrf
    hrf Member Posts: 706
    edited October 2009
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    When I check this thread tomorrow, I am expecting to find a lot of wonderful women here who are suffering from arthritis. ok?

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited October 2009
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    Thinking about you now, Shirley Hughes. Hope you might feel our support wafting your way today to you and DH.

     Tender

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited October 2009
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    Fingers crossed Shirley....I'll be an elephant in your pocket if you want to hold me when you get the news.

  • candie1971
    candie1971 Member Posts: 2,467
    edited October 2009
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    I am praying too Shirley.

  • hrf
    hrf Member Posts: 706
    edited October 2009
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    I'm also sending out positive thoughts and wishes for you, Shirley

  • candie1971
    candie1971 Member Posts: 2,467
    edited October 2009
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    Shirley, thanks for the encouragement. I have osteopenia too. How are things today?

    Jo, pills are oh so good

    Gracie, praying for good results for you.

    hugs and prayers

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited October 2009
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    JO, hrf, Tender (girl, I haven't seen you in a while....I've been naughty...stirring up trouble..LOL), Barbe, Candie, no surprises for me.  JO, yes, my dh went with me.  It isn't arthritis.  I hate to say the "C" word...oops! NOT THAT "C" WORD! 

    Ya know, I really did not intend to talk about this on the board.  But you guys MADE me by reading your posts. 

    My onc was surprised since it was in only one place and with no pain.  She was looking for something to do with my complaints about my arm.  I don't know if she thought she might be missing something since my tumor was large and I had nodes that were positive.  As she said today, she wasn't looking for "this."  She said, "You knew."  I said, "Yes."  She said sometimes we have a sixth sense.  I told her that reading the two scans and one said "suspicious" and the other one said, "concerning" made me want to know for sure. 

    I'll stop taking Arimidex and start on Aromasin.  I will have another CT scan in three months to see if it's working.

    The worse part of this whole thing was telling my girls.  I still have one more to tell.  LOL  My dh was quite silent.  When we got in the car he said he was hoping I would have better news.

    As I explained to my dds, this is a treatable disease.  Women have lived years with this.  I also plan to live many years.  Also, it's hard telling close friends.

    So far I'm okay.  I'll have my little pitty parties.  But, I'm upping my anti-dep.

    Tender, ya got any suggestions.  You've always been the GOOD researcher.  Have you heard anything about magnesium and it's affect on bc?  A friend told me I should talk to my onc about continuing taking it.  I've been taking it for my bones.  Perhaps I'll do a little search.

    Thank you all for your kind words, thoughts and prayers.  I AM okay!  I still continue to put my head in the sand, go about my business and LIVE.  Wink

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited October 2009
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     I'm sorry Shirley. I've been looking tonight for your post, hoping otherwise. I will do a scout around for you. Did your oncologist share that a singular site (isolated site), if shown over time as such often has a very good outcome post treatment. I hope she did as there's quite a bit written on that point.

    Aromasin is good as it's immediately different in ER mode interaction from Arimidex. Think it destroys the receptor or such. Did they biopsy test for a HER2 presence? That's helpful to know too. Probably on to Zometa IV too, and some oncologists vary from every month: new literature coming out on that too.

    I'll check on the magnesium. Been reading some about the benefit of selenium but haven't started it myself. Believe it or not: extra virgin olive oil (oleic acid) and it's precursor also help stop mets in their tract and limit conversion of HER negative to HER positive state. Might be time to dip some bread. 

    Tonight and forward you're on my list of thoughts and dreams. Good ones coming your way for all those future days with your DH, DD's, DSIL's and GC. 

    Let's stay in touch. We'll walk arm and arm together on this journey.

    Tender

  • Alpal
    Alpal Member Posts: 112
    edited October 2009
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    Well #!**#&$! Shirley - I've been lurking on here, and hoping against hope that you'd find out this was nothing. I bet that Aromisin will kick that little devil to the curb! I agree that telling family and friends is the hardest. Take care my friend and know that I am thinking about you, even if you are my political polar opposite!

  • icandothis
    icandothis Member Posts: 70
    edited October 2009
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    Damn, Shirley!

    But, a new AI sounds like a marvelous idea.

    Thank you for letting us be there for you, as you have been for us.

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited October 2009
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    I agree, Damn!  Was hoping for better news for you.  Hoping the Aromisin kicks it in the butt.  I will know next Tuesday, it's my turn to get through the weekend with no news.

    Gracie 

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited October 2009
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    Oh Shirley! I got up in the middle of the night to check on if you had posted yet. Well SHIT!

    Okay, Plan B......

  • cp418
    cp418 Member Posts: 359
    edited October 2009
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    I've been circling this thread as I have similar body joint issues - - - always wondering if arthritis or bone mets.  I either have good days or very bad days always wondering about lower back pain issues, etc. 

    Darn Shirley - I saw your posts and was so disappoined to hear your news  - -  this bc is so sneaky. Yell  However, I am VERY glad you caught it early and will start a treatment plan.  The Zometa seems to be effective for many of us and very easy to administer.  Are any supplements recommended besides the typical Calcium/Mg and Vitamin D doses?

    I've read some recent posts about 'Palm Tocotrienol Rich Fraction' <TRF>, a type of vitamin E which is sounding very interesting.  I'm trying to find more information about it's anti-breast cancer and anti-prostate cancer abilities  - - - wondering why we don't hear as much about it like vitamin D? 

    Sending all you ladies healing prayers and support on this shared journey.  Hugs Joann 

  • Desny
    Desny Member Posts: 73
    edited October 2009
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    Shirley,

    I have been reading along and am so sorry to hear your news.  Like so many of you bc sisters, I was hoping you would have gotten better news.  It is good that you listened to your gut and followed through.  I wish you well and lots of Hugs!  Feel better soon.

  • hrf
    hrf Member Posts: 706
    edited October 2009
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    Hey, Shirley, I'm very sorry to hear that the news was different than what we were all praying for. We are all on this same journey and it could be any one of us who gets that news at any time. But I agree that it is still treatable....the change in AI is a start. Zometa is said to have great results. I have heard of a new drug coming out within the next couple of months called denosumab which is supposed to be even better than Zometa. I hope you will continue to stay active on these boards as we all support each other.

  • Harley44
    Harley44 Member Posts: 2,126
    edited October 2009
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    Shirley,

    Well... we talked yesterday.  I am SO SORRY about your news!   I have been in a very depressed mood since I spoke to you yesterday.

    I know that you are gonna be ok... as you said, it IS very treatable.  But, it just SUCKS!!!

    ...and DON'T think you are gonna get out of going to lunch with me when I see my onc. in December...  it is December 11th, and I'll call you with the details.   YOU are the BEST part of my onc. appts....  looking forward to seeing you then!

    Love ya,

    HARLEY  

  • [Deleted User]
    [Deleted User] Member Posts: 4,011
    edited October 2009
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    Shirley - As I've told you via e-mails...you have lots of support here from lots of gals! Through thick and thin, good and bad... we need to stick together. Hang in there... try to relax whenever possible.

    ---------------------------------

    When I started this thread back in April...I had no idea it would be such a concerning topic to so many gals! I just hate that so many of us have to constantly worry about this topic/issue. Something has to be done! I've said it before and I'll say it again...A satellite millions of miles in the earth's orbit can actually zoom in and identify a car here on earth...but an affordable/effective/precise way to see into the entire human body is not available? Am I crazy or what? There just seems to be so many "unkowns" when it comes to diagnostics. And I can't help but to "not trust" some of the dx's or the lack of.

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited October 2009
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    Tender, no she did not share that piece of info with me...the singular site...but another friend did.  My onc had the prelimary results that she had just gotten the night before I saw her.  The biopsy was done on Tuesday and I saw her Friday.  I'm waiting for the pathology to come back to her.  Thanks for you input.  You are always so helpful.

    Allison, it's really okay to be on opposite sides of the fence when it comes to politics.  We're all on the same side when it comes to breast cancer.  And, yes, telling family and friends is the worst.  A friend an I were talking about not telling anyone.  But I couldn't leave out my family and friends cuz WHEN they did find out, they would KILL me before the bc would...LOL  I swear...they took it harder than me!  Geez!  I'm not dead!  You'd think it was almost time to prepare for a funeral.  Golly gee!  They'll get used to all of this.

    Sue, I have a very good friend who's name is Sue.  When I told her I told her not to freak out.  She said okay.  She didn't.  But I could hear in her voice the disappointment.  I will be okay.  I just know it.  We'll see how much the Aromasin shrinks the little bugger.

    Gracie, I wish I could take away your fear.  It's awful waiting.  I had to know.  Usually I don't want to know, but I just couldn't wait.  I'm hoping that your PET scan lights up with arthritis...LOL  Arthritis does hurt...so, don't know if that's a nice thing to hope someone has.  I'll be looking for an update from you.  Hang in there.

    Barbe, how sweet of you to check on me last night.  Yes...SHIT!  There, I said it!  Are you still hobbling around?  I never dreamed I'd ever have something like this happen in my golden years...LOL  WELL SHIT!  (I'm going to get kicked off of here).

    Joann, I take Vit D, Calcium, Magnesium, Curcumin (going to up that I think), Green Tea, Co-Q10, Fish Oil and Vitamin C.  And I take prescription meds.  I too read something about the Vitamin E you were talking about.  I'll have to read more also.  It's so maddening that bc is a "sneaky" disease.  Seems like we're getting absolutely no where with learning new things that can stop this disease.  Sooooooooooo, we sit around and worry..well some days.

    JO, I was so tired of telling my family and friends about this that I had to wait to post.  It's telling the same story over and over and telling them not to freak out!  Yes, I've heard that women can live with this for many years...thanks for the reminder.  Right now I've refused to ADD stage IV...LOL  Still got the ole head in the sand.

    Desny, thank you.  Yes, the news could have been much better.  But it is what it is.  How I'll feel about it a week from now.......................I may be freaking out!  I'm kinda slow.  Thanks for checking in.

    hrf, thanks again for the encouraging words.  I'll have to look into the new drug you talked about.  Sounds interesting.  Yep, it can happen to any of us........BUT it's not going to happen to ANY of you! Wink

    Harley, don't you worry about me not having lunch with you when you come to town.  Sounds like you live in the sticks..LOL  I still like to eat.  And, you ain't getting rid of me!

    Laura, I just started reading this thread about a week ago or so.  I couldn't stop reading..it was like a soap opera.  Oh, and I do relax all the time.  I know it is so disheartening that we know so little about this disease.  How long has it been around?  Yell

  • cp418
    cp418 Member Posts: 359
    edited October 2009
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    Shirley - sounds like you swollow the same rock collection as I do every day.  I used the term sneaky to be polite - - - I really have stronger feelings about this disease.  I know exactly the frustrations and disgust waiting around wondering when some significant break through will be announced.  One that will at least CONTROL this damn disease, so we can simply be maintained like other diseases. I've had 2 doses of Zometa and take Femara - - which caused the Osteopenia and why I take Zometa.  Yell  However, lots of ladies here doing very well on it, so at least it is one decent weapon on our side.  I will certainly keep you posted if I should run into any interesting news.  I do need to research more about that TRF supplement and where if can be ordered.  Hugs Joann

     (note - I do the head in the sand fairly often myself to maintain my sanity --- it works somedays.)

  • Harley44
    Harley44 Member Posts: 2,126
    edited October 2009
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    Shirley

    I don't live in the 'sticks'...   LOL   but, it IS about an hour away from Wilmington, and about 35 minutes or so from the Coastal Grand Mall, in Myrtle Beach...  so I could go thru withdrawal, from not having shopping malls close to home!!  LOL  But there ARE lots of GOLF courses nearby!!   Too bad I don't play golf....  LOL

    .... Not that I'm in a rush to have my onc. appt.... but I MISS YOU, and want to see you soon.

    Talk to you later!

    HUGS
    Harley 

  • flash
    flash Member Posts: 129
    edited October 2009
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    Hugs Shirley- sorry to hear your news.  Go kick this beast.

  • LisaSDCA
    LisaSDCA Member Posts: 178
    edited October 2009
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    Shirley - I'm so sorry that you've had this result. I agree with Tender that the studies point to a better outcome with a single site. You've got a strong Aromatase Inhibitor to fight back with. I'll bet your next scan shows NED!

    Lisa

  • ktym
    ktym Member Posts: 673
    edited October 2009
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    Shirley, been away from computer access, but I've sure been thinking of you.  I am so so sorry.  Don't know what else to say except, what can I do to help you? 

  • Alyson
    Alyson Member Posts: 3,737
    edited October 2009
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    Have been reading this list for a few days, the old arthritis is really playing up and it really scares me.One shoulder is constanly painful.

    Shirley, big hugs, what can one say other than that this disease is a beast.  I found that it was easier to let others spread the news and then when I came to talk to them I didn't have to go through the initial explanation. My DDs were great doing this.

    Its our Labour Day today so its into the garden for me, at least I will know why I am aching.

    Hope your weekends are going well.

    Alyson 

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited October 2009
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    cp418, Zometa may be the next thing I talk about with my onc.  My dexa on July 1 says I have osteopenia of the hips.  As much as I don't want to take Zometa, it just may be in my very near future.  That other "shoe" has dropped, so now it's time to wait and see if the Aromasin works.

    Harley, dear, I'll see you soon.  Time flies.  I can't believe it's almost Christmas! 

    Flash, I'm planning to do some kicking!

    LisaSDCA, yep, I feel NED right around the corner.  He's waiting...LOL  There are several things we can try.  I'm hoping this AI will be the one for now.

    kmmd, awwwwww, thanks.  There's nothing you can do.  Just knowing that others care warms the ole heart. Wink

    Alyson, I've chosen not to tell everyone YET.  I wasn't going to mention it on the board, but got so involved in this thread.  I swear..my friends and family are taking it harder than me!  I'm sorry that your arthritis is acting up.  I have a friend with RA and her poor joints are about pooped out.  Arthritis ain't no fun.

    Thank you all.  I feel asleep on the couch..woke up...thus, the late post.  Now I think I'm getting sleepy again.  Nite nite.

  • konakat
    konakat Member Posts: 499
    edited October 2009
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    Oh Shirley!!!  I'm so sorry to hear this news!!!!  Zometa is great -- and Aromasin will kick cancer butt.  Take care of yourself -- I'll be checking on you!

    Elizabeth

    xoxoxoxoxoxooo

  • hrf
    hrf Member Posts: 706
    edited October 2009
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    I had an infusion of Zometa just this past Friday. It was fine.

  • AnnaM
    AnnaM Member Posts: 136
    edited October 2009
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    Shirley, I am so sorry to hear your news.

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited October 2009
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    Tomorrow is my appointment.  Am so nervous tonight, my chest hurts.