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Old 01-26-2009, 05:13 PM   #1
Laurel
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Jaw pain anyone?

I am in a clinical trial with a bisphosphonate called Clondronate which is presently on a FDA fast track here in the U.S. and given liberally in Europe. Although it requires an hour post ingestion where food or additional liquid is withheld (which can get a bit long to wait for that first cup of morning joe!) it hasn't been troublesome for me in terms of side effects until recently. After about 2 weeks of daily doses of Clondronate I noticed this dull ache in my lower jaw on my right side. Initially I chalked it up to flossing too zealously and later to brushing with too much vigor. I eased up on both without any improvement, so I gave up chewing gum and tried to notice if I was grinding my teeth or clenching my jaw when under stress. I do not seem to be exhibiting either behavior. Finally after 2 full weeks I sent off an email to my clinical trial nurse to let her know that my jaw was aching and not improving. In the meantime I stopped the Clondronate until I saw my dentist who did not "see" anything alarming. We decided mutually to forego the med until the symptoms abate. If there is no improvement in 2 weeks he will do some x-rays. If it resolves spontaneously I will resume the med. FYI: I did have a dental cleaning and x-rays in mid-December prior to starting the trial.

My onc, dentist, and clinical trial nurse do not seem to have much experience or knowledge regarding the early signs and symptoms of ONJ. Has anyone out there experienced a dental problem with an oral bisphosphonate, or know someone who has? I really want to continue the drug, but don't want to have a dying mandible! Thanks!
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Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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