Pamidronate

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PhoebePharoah
PhoebePharoah Member Posts: 3
edited May 2015 in Bone Health and Bone Loss

Any have any experiences with Pamidronate perhaps contributing to promotion of cancer cells spreading through soft tissue.  It's supposed to strengthen the bone but I've come across concerns about it leading to other problems.

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2015

    Phoebe, I do not knowof this, but I am bumping your question to the top of the active threads, where more people will see it, and maybe you will get responses soon.

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  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    This drug....ugh. If there's anything I could have a do-over on, it would be accepting this drug. The problems it has caused me far outweigh any benefit. I don't know if it caused soft tissue progression, but it caused many other issues. Maybe it's not so bad for lower stage disease, but I definitely think it should NOT be an option for Stage IV disease.

    I hope someone comes along with better info for you regarding soft tissue disease.

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  • GG27
    GG27 Member Posts: 2,128
    edited April 2015

    I am interested in this as I've been on pamidronate for almost a year now. The only issue I've had was the first few infusions, I had flu-ish symptoms for 48 hours & the other was a problem with my eye bothering me, but that has been solved by slowing down the infusion.

    Leggo, I'm wondering if you would share your issues. Not a problem if you don't want to, I'm just wondering what I could "look forward" to. Thanks, GG

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  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    GG, I'd gladly share...almost feel obligated after finding out what I recently found out. To quote the doctor..."We're just now finding out what harm this drug can do. Until recently, the risk/benefits were in the drug's favor".

    I had a broken femur and just recently lost two teeth and a portion of my jaw bone. What good is a drug that instead of protecting your bones, causes them to break and leaves you deformed. I'm horrified. The half-life of this drug is astronomical, so 10 doses or 100, the damage potential is the same. Shame on whatever loser drug company pushed this drug through. Worse, not disclosing the reality of the potential damage, of which they can argue all they want about it being rare. I now know it's not the case. If you live long enough, you WILL have major problems and I suspect the drug company knew it all along and bull-shitted their way to approval.

    As for the original post about cancer spread to soft tissue...no idea, but if it turns out to be the case, I wouldn't be at all surprised. 

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  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    I forgot to mention the irony. The medical profession thought the danger lay in any invasive dental work. Now finding out that's not true either. I had a tooth pulled so the area was being watched. That has never given me any problems four years out. The damage was quick and spontaneous on the other side of my face.

    And the kidney damage. I've not had the displeasure of permanent damage because it was stopped when my kidney function decreased, but many have. Christ this drug!!! 

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  • GG27
    GG27 Member Posts: 2,128
    edited April 2015

    Thank you for sharing Leggo, I'm just sorry you've had some much damage done to your body when the drug is supposed to help. My onco has suggested a once a day pill which I resisted because I would have to sit up & not have any coffee for an hour after taking it.... that now seems like a small price to pay to not have the kinds of SE's that you've had to endure. GG

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  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    Thanks GG. I wish a pill had been recommended for me. What's the name of the drug?

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  • GG27
    GG27 Member Posts: 2,128
    edited April 2015

    You know Leggo, I don't remember what she said or even if she said what it was.... I will ask her about it again when I see her at the end of May. There were 2, but she asked if I had supplemental insurance for the one, apparently it is very expensive & I don't but the other one is covered. But at the time I felt it was too restrictive, but I will now revisit it. I will let you know when I find out. GG

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  • mw900
    mw900 Member Posts: 76
    edited May 2015

    Phoebe,

    I was on monthly Palidronate (Aredia) for 5 years. I have had no SE to speak of. A study came out showing that Zometa (Zoledronic Acid) every 3 months is just as effective, and the infusion takes 15 minutes instead of 2 hours, so that's what I'm doing now. Renal problems and jaw problems are well known adverse affects possible with biophosphates.

    Leggo ,

    So sorry to hear of the damage the drug has done to you.

    Best to you both.

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