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Old 07-02-2006, 01:38 PM   #1
Lisa
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Bone mets and Zometa

Friends,

I'm sure those of you on Zometa have heard about the jaw breakdown potential. A couple of days ago, I took my Dad to an oral surgeon for teeth extraction. When I mentioned I was on Zometa, he sat down and said "We need to talk." He says Zometa is very scary. That I could have NO work done on my teeth, short of cleaning, for more than 10 years. 10 years is its half-life. So even if I stopped taking it now, there would need to be another 10 years before any oral surgery could be done without fear of major jaw damage.

He said that many women have been taking Fosomax for years and they, too, are in dange.

Should we be asking our oncs about alternatives for bone mets?

Love and light,

Lisa
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Old 07-02-2006, 02:25 PM   #2
Barbara H.
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Question

Hi Lisa,
I have been researching this problem today. I have been receiving Zometa since March. I really feel awful for a few days after treatment. I ache all over and the intensity depends on how much Advil I take. Apparently, you can have dental procedures, but you need to avoid, tooth extractions, gum surgery, and root canal procedures. My oncologist feels that I need to take it, but he also says that the real correct standard is unknown, although the current practice is every 3 to 5 weeks.
My other problem is that I produce a lot of plaque and need to have my teeth cleaned. My counts are now really low due to Navelbine, and I had to skip my recent cleaning treatment. This makes me worried because skipping my cleaning treatments can cause gum disease. It is a catch 22 situation. I also have to schedule my cleanings 6 months in advance. How can a person plan? When I asked if I could just come in when my counts were high, I was told there are many cancer patients in the same situation and the office can't handel that kind of scheduling. I am going to request that my cancer center start offering teeth cleaning for cancer patients because then the situation could be better monitored.

I'm glad that you brought this up, because a lot is unknown still in this area, and more research needs to be done. My oncologist does have a patient with jaw necrosis from Zometa and he said it GREATLY has impacted her quality of life.

I hope to hear from others on this site, because it needs to be discussed and researched.

Again, thanks for bringing it up.

Best regards,
Barbara H.
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Old 07-02-2006, 06:44 PM   #3
heblaj01
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Osteonecrosis of the jaw from Zometa is relatively rare in breast cancer patients but is I think more frequent in myeloma cases.
Besides the debilitating damage to the jaw bone, there are recurrent local infections that are difficult to overcome. However, from reading of some message boards it appears that some breast cancer women are able to control infection with the antibiotic Doxycycline (which according to some unrelated preliminary studies may also be beneficial for bone density as well as an indirect anti-angiogenesis agent against cancer).
All the bisphosphonates currently prescribed (even the older ones such as Fosamax) are now known to cause osteonecrosis of the jaw to various degrees. But the more potent newer drugs such as Pamidronate or Zometa seem to cause it more frequently. In the case of Zometa the usage is only stretching over a few years compared to over 10 years for the older ones, so comparisons may not be fair. Also, because until recently there was no warning by suppliers of bisphophonates about the risks to the jaw, cases of necrosis were not in the past reported or associated with the guilty drugs.
Court cases are pending against the manufacturer of Zometa by patients complaining of not being notified in advance of the potential jaw problems.

Last edited by heblaj01; 07-02-2006 at 06:46 PM.. Reason: typo error in"rate"
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Old 07-02-2006, 06:52 PM   #4
anne
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Lisa,

Let me tell you about a patient of mine. She is also on Zometa and she had an extraction 2 years ago without any complications. At that time we did not know the dangers from oral surgery and biophosphonates. You can still have dental work done, just not traumatic surgery, ie teeth pulled or major gum surgery and such. Besides if you see a specialist, the complication they are most worried about is osteonecrosis and this can be treated with hyperbaric treatment if it were to occur. My advice would be to visit your dentist reg. and have them keep your teeth and gums as healthy as possible.
Take care,
Anne
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Old 07-02-2006, 06:56 PM   #5
anne
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I was reading the post that said you cannot have root canal treatment. I was reading a dental journal and they said having root canal treatments are more favorable that extracting the teeth as it is less traumatic to the bone.
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Old 07-02-2006, 10:36 PM   #6
Karen t
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Can anyone provided more info related to this statement that was posted earlier today?: "However, from reading of some message boards it appears that some breast cancer women are able to control infection with the antibiotic Doxycycline (which according to some unrelated preliminary studies may also be beneficial for bone density as well as an indirect anti-angiogenesis agent against cancer)."

I have had one dose of Zometa and six of Aredia. One week after the first infusion of Zometa, I had a fever that lasted a full week and went as high as 103. My onc then switched me to Aredia.

After the 5th treatment of Aredia, I got another high fever that lasted a week but I'm not sure if it was related to the Aredia because it happened two weeks after the infusion. When my temp went over 103, I went to the ER and was told I probably had the flu. Several days later I was in my onc's office and she decided I had a bacterial infection in one lung and put me on an antibiotic. My lung was making funny squeezing noises and it was difficult to breathe.

Both times that I had these high fevers, there were no flu symptoms, no fatigue, no general aches, etc. Mostly joint pain - especially swollen finger joints.

Has anyone had similar experiences?

Also, has anyone else been tested to see if the Zometa or Aredia is working, e.g., isn't it supposed to reduce the amount of calcium deposits found in the urine (not sure of the details)?

Thanks,
Karen
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Old 07-03-2006, 08:43 PM   #7
heblaj01
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Karen,

Here are below a few extracts from an other message board (I have been occasionally lurking into) about Doxycycline. Notice the ongoing phase II trial on bone mets in Canada.

Zometa was originaly approved to treat hypercalcemia & only later to slow metastatic bone lesions & to reduce bone pain.
Temporary fever & joint pain caused by Zometa are usually significantly reduced (if not completely avoided) by taking tylenol shortly before & for about 24 hours after the IV's. On subsequent IV's the side effects may not happen even without tylenol as the body appear to get used to the drug.
As an added precaution the IV duration should be extended from 15 to 30 minutes mainly to better protect the kidneys especially in patients with problematic kidney function.
On average, I believe that the minor temporary side effects are more frequent with Aredia than Zometa.
Of course all these precautions may not work in patients with strong allergic reactions.

From: Judi <judiz_at_umich.edu>
</SPAN>
Date: Mon May 29 2006 - 13:20:54 EDT
Just a little blurb on the Doxy study - not much info, but: A fourth research study that is ongoing and is getting much attention
is the doxycycline Phase II trial. Doxycycline, a well-known antibiotic,
was shown to be very effective in reversing bone metastases in mice.
Eleven out of the needed thirty-nine patients have enrolled so far.
Participants need to have been diagnosed with bone metastasis and have
not yet been treated with bisphosphonates. For more information on these
studies, contact Dr. Bindi Dhesy at the Juravinski (Hamilton Regional)
Cancer Centre."

I have been writing to a Dr. Singh, so I don't know if he is one of the
PI's or if Dr. Singh's study is a different study from mthat of Dr.
Dhesy. They're both in Canada, so it's likely the same study. When I
email Dr. Singh again, I shall ask if Dr. Dhesy's study is indeed one in
the same as his.

I heard back from the PI of the study and he told me that the clinical
>> benefits look very promising and the dose they are using is 100 mg. This happens
>> to be the dose that I am taking for ONJ and there is absolutely no doubt
>> that I have felt a difference - a positive difference - in my bone mets. Am
>> very excited about this cheap, been around for decades (so no surprising side
>> effects) med! BTY, Judi


From: <Kaye301_at_aol.com>
Date: Wed Feb 08 2006 - 23:35:50 EST


</SPAN>In a message dated 2/8/06 6:30:09 AM, judiz@umich.edu writes:
> Doxycycline for bone mets - or for any reason, for that matter. Dose?
> Side effects? Any good results concerning bone mets and/or ONJ (if you
> have it)? Thanks so very much. Judi
>
>

Hi Judi, I have been taking it for 3 years along with Celebrex and half-dose
(now full dose) Zometa every 3 mos. Back in '02, about 20 mos. or so after
my dx., about 6 weeks after I stopped Herceptin after taking it for one year,
my alkaline phosphatase level which had been slowly but steadily increasing
made it's greatest jump--20 pts. in about 4 to 6 weeks and was just a
couple of pts. below being abnormal. Normal was <121. My level was 116. At
start of bc it was in low 60's/high 50's. I started taking the Doxycycline 50
mg/twice/day and also doubled Celebrex from 200 mg. to 400 mg/twice/day. The
next month my alk. phos. level stabilized at 114. It then began to steadily
decrease and returned to the 50's/60's. It has since gone back to 70's but
is still normal. I have been taking the doxycycline twice/day. I did try a
stronger dose (double) for a different reason but that bothered my stomach.


Last edited by heblaj01; 07-03-2006 at 11:47 PM.. Reason: Added info on hypercalcemia & tips to reduce side effects of Zometa
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Old 07-03-2006, 09:20 PM   #8
lu ann
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I have been on zometa since Feb/04. Last Thursday I had my second bottom right molar removed without problems. Is there something that could go wrong in the future because I had this extraction. Lu
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Old 07-03-2006, 09:47 PM   #9
StephN
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Wink

Hi LuDon't know about future problems concerning this extraction, but as long as you prevent any infection now, it should be OK.

There is another thread on this subject under the title of
"Caution Biphosphonate Users/"

There is additional info and published papers.
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
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2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-05-2006, 05:30 PM   #10
RobinP
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Lu ann, you should use antiseptic oral washes in your mouth to help prevent infection along with notifying your dentist to see if he would like you to take a preventive antibiotic so no infection will develop where you had your tooth pulled. I really think these measure would help prevent any oral problems. Good luck.
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