Bone pain ? mets

TKSit
TKSit Member Posts: 184
edited June 2014 in Pain

Looking for some input from you wise women! Long story, short...I am Stage 4 since diagnosis Jan 2011. Double mast, chemo, radiation, full abdominal hyster and now on Arimidex. 4 weeks ago, started having intense pain in both wrists. Now having bone pain in hips, right femur and left arm as well. I am thinking the Arimidex is causing pain or I am developing osteoporosis. But of course, mets is in the back of my mind, as it always is. No meds, including narcs are helping. Any advice or input? I am having a bone density test next week. How does bone mets feel and does it come this acutely in so many areas? Thank you for your help!

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  • midnight1327
    midnight1327 Member Posts: 1,475
    edited May 2012

    Hi just wondering, i did not need a mascectomy, just a lumpectomy and rads and tamox, when they do a double mascectomy is it done under one surgery or one and then the other down the track. I always thought it would be a big op if they were done at the same time alot for the body to adjust to esp if chemo is neeeded to follow up with.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Tonya wide spread pain can indeed be a SE from Arimidex but as always the rule I follow is, if it doesn't subside or grows worse, after two weeks I check in with the doc.  

    Bone mets feel like a pain you have never experienced and it is once established, continual.  It also wakes you at night from a deep sleep.

    I would mention how you are feeling to your doc and really get it checked out.

    Love n hugs.  Chrissy 

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Midnight I just PM'd you

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    I had no problems with the double mast. in one surgery. Pain meds controlled the pain just fine. Had 3 drains in for about 7 days. Otherwise it really wasn't that bad. Started chemo a few weeks later, so I was pretty well healed.

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited May 2012

    The pain I have from Arimidex is in the joints, and not in the bones themselves, if that makes sense, so the wrist issue could be from the Arimidex.  I don't know how bone mets feel, but just hearing what you have to say makes me think you need to call your onc and not wait for the bone density test.   If the Arimidex is not working for you it's probably better to find out sooner than later.   Whatever the pain is, 4 weeks is long enough to wait, so call in the morning.

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    Ok. I will call and ask why a bone density and not a scan? MO nurse said he wasn't concerned with it being mets. More concerned about bone loss I guess. So sick of all these SE's. Just wonder if it is even worth being on Arimidex? My hormone receptors were not that high anyway and I don' t have a uterus or ovaries. Not sure I can keep going on like this.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Tonya, it is important to have a bone density scan because being on Arimidex will deplete your bones and give you osteopenia if not osteoporosis.  MO nurse is just that, a nurse so I would ask your MO regarding a bone scan to put your mind at ease.

    If you are having so much trouble with the Arimidex, ask your MO about changing to something else.  There are other meds and we react differently to all of them.  I was originally on Arimidex and suffered so badly I would have rather be dead but my doc changed me to Femara and within a week I was beginning to feel like my normal self and continue to do so.  

    Hope this all gets sorted for you.

    Love n hugs.  Chrissy 

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    Thanks for your great advice, Chrissy. I will ask about Femara. I was miserable on Tamoxifen too. It's slightly funny that after all the surgeries, chemo, radiation, that this has really been the worst part. Was not expecting that. Wondering if things will ever get back

    to normal?

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Tonya, I'm actually allergic to Tamoxifen.  It put me in hospital with a suspected heart attack after just three weeks on it.  Sounds like you have a real techy system like mine so maybe the Femara will be better for you.

    There is a great stage IV forum, why don't you come across and join us there?  There are a lot of women who are very happy to share their great knowledge and they also make you feel like you are not walking this journey alone.  Either join in with one of the threads or start your own.

    As a stage IV we have to reinvent what our normal is but you can have a good life, it just takes time to find it.

    Love n hugs.  Chrissy 

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    I will check out that stage IV forum. I hate being put in a catagory with stats that are only for doctors. But the truth is, that I had Stage IV breast cancer. I will join that forum for sure, because all these women have something better that gold, they have experience and wisdom that I am in much need of. Thanks for the invite, Chrissy

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  • midnight1327
    midnight1327 Member Posts: 1,475
    edited May 2012

    I went and had mamogram today, was not as bad as i expected as having a sore boob, i thought it would hurt with that machine pressing down on it, was abit uncomfortable when she did the side shots, had to get into this kinda awkward position, felt like i was doing a photo shoot. i should get results next week, they have to compare the other mamogram with this  one today and just hope i am all clear.  have had a heavy feeling in chest today, i wonder if that is the tamoxifen causing it.  been with me all day, quite annoying and into my shoulder blades/ better than it was, but at one stage thought i may need the hospital to check me out. anyway c how it goes.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Midnight I'm so glad that your mammo went well for you and it was not as bad as you thought it would be.  I hope that heaviness in your chest lifts but please, if it continues, let you doc know ASAP as it could be a reaction to the Tamoxifen.

    Love n hugs.  Chrissy 

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  • midnight1327
    midnight1327 Member Posts: 1,475
    edited May 2012

    Thanks Chrissy,  thank you,  i do feel alot better than i did earlier on. Was wondering if i was having a heart pain at one stage, will get hubby to take me to doc if it does not go. i feel that the tamoxifen is the culprit, but am not a doctor, so i wont assume. i understand this medicen can cause AWFUL  side effects like thay r all guilty of. you doomed if you do and doomed if you don't, cancer is a pain in the A.  But we got it and can only deal with it as best as we can and think there is alot worse off ladies than me.  I got off pretty lightly compared to some. am very blessed.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Midnight if you have that chest pain please don't wait to see if it goes.  Your life is not worth the wait whatever the cause.  You would be better to get an all clear from the doc than end up in the ICU or worse.

    Yes we all have to deal with what BC brings to our lives but we are women and capable of dealing with everything!........lol.  We are strong, stronger than even we think until we are tested.

    Love n hugs.  Chrissy 

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    Update on bone pain. Had a bone density test today and saw onco. Told him about pain and he was a bit concerned about my right femur pain. He saw he was "90%" positive we are not talking about bone metastasis, but ordered a bone scan for next week to be sure. I am stoping my Arimidex for 2 weeks too. Makes me nervous being off Arimidex. I guess I will just have to try something different. Could not tolerate Tamoxifen either. So frustrating. Praying for clear scan results. My 40th bday is next week and would like to enjoy that! Hubby asked me what I wanted for my bday and I said, "Another birthday!" Isn't that what we all want?

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  • Katarina
    Katarina Member Posts: 386
    edited May 2012

    TonyaK ---- I thought I had bone mets on Arimidex. It just got worse and worse and peaked between 4 and 6 months after starting. I was using vicodaine but to no good use. I got so weak in my wrists and knees I couldn't put any weight on them and barely moved. I went from doing yoga to sitting and still being stiff and in pain. I felt it in my shoulders, elbows and hips too. Fatigue came with it. I was not able to stay on my job.

    My Onc took me off of Arimidex 6 weeks ago. He's giving me a vacation. Next week I'm going on Aromisin. I can tell you that I don't have any joint, muscle of body aches anymore. I feel I went from 90 years old to my healthy body but it took weeks off Arimidex.  I'm grateful for the reference to Femara, just so if the Aromasin doesnt work I have another to try.

    I have had suspicious lesions on my bone scans but my Onc didn't indicate Cancer. Can someone describe the symptoms and pain of bone mets for those of us who don't want to confuse med induced pain, arthritis, etc, with the deadly bone mets. Someone above indicated we'd know.....please more description and elaboration???

    Hugs,

    Kat 

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    Thank you for the input, Kat. I have been on Arimidex for 5 months and started having problems about 5 weeks ago. Stinks that after surgeries, chemo and radiation, that most my trouble has been with these darn meds! I am thinking Femara will be the next med to try, but I think Arimidex has better results with postmenopausal women? I would also be intrested to hear how bone mets feels. I have read that some people have intense pain while others are unaware that they even had it.

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  • Katarina
    Katarina Member Posts: 386
    edited May 2012

    TonyaK - I did some research on Arimidex results and while it's a really powerful lifesaver, it was interesting because the study group reported worst symptoms at 6 months into the drug and worse for 50-60 year old age group. My Onc warned me before he put me on it but I thought after first few months that I'd sail through it and could handle the stiffness. I was relieved to find out that it "Strikes" at month 6th. What a relief. 

     MRI found cancer on my sternum (chest breastbone) and some suspicious lesions on the cervix and spine but I've always had lower back trouble so I will never be able to tell unless someone tells me it's bone cancer. Only thing I've felt on my chest (after BMX and reconstuction) is a heaviness like a rock is sitting on my chest. 

    I'll go with Aromisin and report back on how it works. If it's like Arimidex I'll try Femara. What else is left?

    ChrissyB --- can you tell us more about how bone mets feel?  It took 4 weeks off Arimidex, for my Arimidex pains to subside.  

    I haven't heard anyone yet complain about Femara.

    Hugs 

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  • Gingerbrew
    Gingerbrew Member Posts: 2,859
    edited May 2012

    I have had great luck with Aromasin. I started on Arimidex and had so many SE's that MedOnc took me off for about 5 or 6 weeks. On aromasin I have knee aches and minor hand aches. On Arimidex I hurt all the time and had so many side effects that I can't even remember them all now. i am happy Aromasin works for me. I am 66 years old.

    Good luck to all of your with the AI's

    Ginger

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  • Katarina
    Katarina Member Posts: 386
    edited May 2012

    Ginger,

    One of my doctors told me to take fish oil daily for the joint and body aches. I've read this here on this board by someone as well. Worth a try.

    Hugs 

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  • TKSit
    TKSit Member Posts: 184
    edited May 2012

    Good news! My bone scan came back clear yest. On my 40th bday, no less. What a great present. Now awaiting bone density. If that is normal, the bone pain is most likely the Arimidex. I guess we may try Aromisin or Femara now? Wish I could just stay off those kinds of meds, since I have no uterus or ovaries poducing hormones. My cancer was only weakly hormone responsive. Any ladies out there that have dexided to stay off AI's because of prophylactic hyster/ovary removal? Thank you for any input!

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited May 2012

    Tonya, congratulations!  I'm so pleased that the scan has come back clear!  Happy Birthday girl!!!!  Hope there are many more for you.

    Your bone density scan (DEXA) is quite a common scan to be done as loss of estrogen either natural or drug induced can and does diminish bone.  It will let you know if your bones are still strong or if you are developing osteopenia or osteoporosis, both of which you want to know about.

    It's not just your uterus/ovaries that produce estrogen.  Your body can produce phitoestrogens in the adrenals and body fat and then it converts it to estrogen so taking Tamoxifen or an AI is important. 

    Tonya I am allergic to Tamoxifen, didn't do well SE wise with Arimidex but Femara has been and is great.  I am having a good run with it and have almost no SE's other than the occasional hot flash.  Trying the different meds is a good way to actually find the one that is going to work best for you and with you.

    Good luck!

    Love n hugs.  Chrissy 

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