Crazy few weeks.

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Fitztwins
Fitztwins Member Posts: 7,969
edited September 2016 in Stage IV/Metastatic Breast Cancer ONLY

So, those of you who have been here a while, might have remembered that I broke my foot 4 years ago at that time my ortho told me that the use of long term bisphosphonates (zometa) can actually damage the bones. Because we are living longer we are on these drugs longer.


So I started limping late April. It was my foot. Went to a podiatrist, he some it looked like a hairline fracture. We went with orthothodics. Then I started to experience pain in my leg (thigh outer and upper) . I didn't give it too much thought. Discuss it all with my oncologist and he said lets wait and see. The pain was not too bad, mortin controlled and it came and went.

Around the 2nd week in June the pain started to get really intense. I called the doc and asked for stronger meds. It went from bad to worse, where the doc order an x-ray. The x-ray came back with Thickening of the femur. I of course googled it ..I found two case study online that mentioned similar problems with long term use of bisphosphonates. I never got a chance to discuss this with the doc. When he ordered a bone scan, which of course lit up. Onto a MRI to see what was causing all the pain. (bad pain).

**** NOTE at this point I should have pushed to see my oncologist and and orthopedic oncologist.

It seems we kept going from scan to scan and meds.. It was all around the holidays...which made it worst. I put myself on crutches because I KNEW something wasn't right and I had read too many cases of those with mets getting fractures or hips breaking. I personally knew someone who did just that.

The MRI said that I had a 7cm tumor in my leg. WTF? Where did that come from?? finally met with the regular oncologist and the ortho.

Regular oncologist wasn't too concerned and figured we would proceed with surgery with a rod and rads.

Then I met with the Ortho. He said, You definitely have a hairline fracture. I don't think its a tumor and I think it is from the Zometa. I said ""THAT IS WHAT I THOUGHT""... he recommended surgery.

I had surgery Tuesday, the rod inserted, and a biopsy taken. Guess what??? NO tumor!!!


I am doing well, Phew what a ride.

I have been on Zometa for 8 years. Talk to your docs about this!!

Janis

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  • JFL
    JFL Member Posts: 1,947
    edited July 2016

    Wow, quite a trip! I am glad to hear, after the trials and tribulations, you found a solution with surgery AND that it is not mets! I had heard that bisphosohonates and XGeva increase the risk of femur fracture, specifically a complete break. Yikes.

    Has your dose frequency been lowered over the years? Can I ask how often you receive it now? Just curious how that works for long-term survivors. I hope to be one some day.

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Wow Fitz! Glad you got it all figured out and can start feeling a little better.

    Thanks for the words of warning and wisdom,

    --The Mods

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2016

    Yikes! You are amazing, Janis, working your way through that thicket of misinformation and misguided advice.

    I hope you're feeling better by the day. Thank you for alerting us. Please keep us posted!


    Tina

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2016

    I am sorry you were in such pain and hope that the surgery completely eliminates it! And it is wonderful to hear that the test results were excellent!

    I hope you recover quickly and fully!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    yes, Wow! What a frikking ride...I am sooooo glad it was not a tumor but having surgery and a rod inserted does not sound like a picnic either. I am very glad you are doing well and sending wishes for a speedy recovery. You are a trooper Fitz!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2016

    Fitz, so happy no tumors. Phew!

    Worried about the bisohonates myself, but they really do help keep the cancer at bay.I guess that's benefit vs risk. I hope you are getting around better soon.

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  • Kandy
    Kandy Member Posts: 1,461
    edited July 2016

    Thank goodness there wasn't a tumor. Hope you recover quickly from your ride. Wishing you the best.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited July 2016

    Thrilled that there is no tumor.  Ugh to the se's of the meds we are now taking long term (if we are fortunate enough to live long term!)  The proverbial rock and a hard place!

    Be well soon

    Nel

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  • Moissy
    Moissy Member Posts: 550
    edited July 2016

    Wow, happy to hear the end of the story and hope you are feeling well soon!

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    OMG.

    Thank you for taking the time to share this. Cancer is so complicated. We're the only ones with the time and all the pieces. Your story reinforces the importance of staying involved and managing your own care. Great job respecting your intuition.

    It is important to understand they can't tell a bone met from a fracture in a scan, among many other issue with the scans.

    Your post will help many people manage their treatment on zometa.

    >Z<

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited July 2016

    wow talk about Mr Toads wild ride! Glad you have a happier ending though

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited July 2016

    Oh my goodness! So sorry that you have had this pain and surgery. I hope that you are getting better daily. I always look forward to your posts. You are such a big help to others.

    Prayers for quick healing and pain relief. So very happy it was benign.

    Brenda E

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2016

    Fitz, how are you feeling now? I'm glad youhave found relief of the pain. I am curious what you mean when you say no tumor. Do you mean a mass was found and removed but not cancerous? Also, what is your frequency of zometa infusions?

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  • jobur
    jobur Member Posts: 726
    edited July 2016

    Fitz, Thanks so much for sharing this! Hope you are feeling better and on the mend. Sure would like to understand how a hairline fracture can look like a 7cm lesion! WTH?!  Mr. Toad's got nothing on you! Have you been getting Zometa monthly all this time, or did you go to quarterly at some point?

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  • Lovelife49
    Lovelife49 Member Posts: 59
    edited July 2016

    Yikes! I'm so sorry you've been through all that but so glad it wasn't a new met. I hope you can enjoy the rest of the summer without as much pain and aggravation. I saw where it's going to be unusually hot where you are for the next few days. Only reason I know that is much of my family is in GR. I always think of them when I see your name pop up here. Keep that AC on and relax!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2016

    Janis,

    Glad it was not a tumor. Hope you heal well. I've been on Zometa or Xgeva for 7years. This as well as back radiation has worked well for me so far.

    Terri

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  • starbrightlyshines
    starbrightlyshines Member Posts: 344
    edited July 2016

    I have been wondering about long term use too.  I have talked to my onc and dentist about it and they both confirm that there aren't ,,amu studies about long term use so there aren't any good guidelines to go by.

    I have done Zometa infusions for about 3 years (every three months) but I kept getting such bad stomach cramps I would be in bed for two to three days.  So my Onc swiiched me over to Xgeva (?) injections every months. But now I am getting flu like symptoms afterward (joint pain) and last month I had such a bad headache I was in bed again for 2 days.

    So I am in dilemma about what to do next.  My regular onc will be out of town for my next visit so I will probably decline the injection and talk with this Dr to see if he has anything new to add, and then discuss with my regular Onc when he gets back.

    Has anyone else had severe side effects from biophosphates?


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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    starbrightly

    The ladies on bones mets thread no there way around zometa and xgeva like no one else. Definitely post there.

    >Z<

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited July 2016

    Wow Fitz! So glad it wasn't a tumor, but how awful that you were in so much pain! You mentioned "thickening of the femur". Was this from extra bone being created? Is that what looked like a tumor? I hope you are now on the mend and in less pain.

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  • AmyJM
    AmyJM Member Posts: 665
    edited July 2016

    Janis,

    I'm so glad it wasn't a tumor, but what a ride is right!!! Sorry to hear that it took them so long to get to the bottom of it, but I'm glad that they finally figured it out and took care of things. I hope your recovery goes well.

    Thinking of you,

    Amy

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  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2016

    Just seeing this, Janis. So glad you had a happy outcome (no tumor), and glad you're doing well.

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  • KSkier
    KSkier Member Posts: 467
    edited July 2016

    How crazy it is that we are HAPPY that we JUST have a broken bone! Yet another thing to add to the list of items that those without cancer mets would never understand!

    Strength and Healing!

    KS

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited July 2016

    To answer a few questions

    There was no Tumor or mass just Area ( inflammation /fluid) that looked like a tumor on the scans.

    I had been on zomenta since 2008, broke my foot in 2011-12 , can't remember .. Went off of zomenta for a year , then back on after bone mets progression

    Was on the 6 weeks plan ,now on 3 months

    Ortho doc said damage was done..

    Just a note to anyone with leg pain or any fractures,

    Demand an orthopedic oncologist !


    ,

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  • stagefree
    stagefree Member Posts: 2,780
    edited July 2016

    Janis,

    Phew! Glad it's no tumor, glad the surgery is already over and hopeful this does not repeat again. Crazy ride this is, the cancer rollercoster, indeed!

    Ebru

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  • steelrose
    steelrose Member Posts: 3,798
    edited July 2016

    Janis,

    I'm glad this ordeal is over for you, and thanks for the very good advice. I've been on Zometa and now Xgeva every month non-stop since 2010 with no plans of slowing down according to my MO. I've asked about cutting back but she seems to think all will be well. Mmm-hmm. I'm doubting everything now! Maybe I'm just getting tired.

    Wishing you the very best!

    Rose.

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  • car2tenn
    car2tenn Member Posts: 515
    edited July 2016

    oh your report from surgery and cancer land is a heads up for all of us. thanks Carolyn

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited July 2016

    Janis--wow what a freakin ride for sure! Wishing you a speedy recovery

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  • Tilda
    Tilda Member Posts: 91
    edited August 2016

    So happy for you. Sometimes we definitely are our own best advocates.

    Tild
    image

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2016

    Tilda, great cartoon

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2016

    That cartoon is SOooooooooo me, and I think my new oncologist doesn't like it.

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