UPDATED. 12-17-12 Migraines, Snowstorms, Bisphosphonates- (and an Old Lady too)!

*originally posted: 12/9/12

Noticing now that I had inadvertently closed off the comments on this.  It is fixed.

Mea Culpa.

Best to grab a cup of coffee, or a glass of juice- 
Long-winded again. Sorry...


Good Early Morning Everyone;
Odd isn't it how one can be busy, (mostly), yet have nothing truly new to add to a blog/story? What's up with that?

I have been fighting off this migraine for about 4 days now. Maybe that means it has almost run its course- Maybe not. (But I damn sure hope so).
Finally, on Wednesday I called to ask Casey if

BISPHOSPHONATES- (And the official Boniva pitchlady).

Good Monday Morning All;

I am going to 'cheat' today and just copy a note I had written to my good friend, Beth.
Too tired after cleaning up doggie barf all weekend- 

As you might remember, Beth was dx'ed with a plethora of garbage going on in her system- (after she finally went to her doctor that is). hehehe

I am happy to tell you that she has beaten her breast cancer as well.

She recently told me that her doctor had prescribed Actonel, a bisphosphonate.

Dear Beth; I am hoping you canceled that date you have for getting any more bisphosphonates? Know that once you have osteo anywhere, you have osteo. some bones may be less thin than others, but the disorder is systemic. Anyway, I have a link for you about other peoples experiences with it. http://www.askapatient.com/viewrating.asp?drug=20835&name=ACTONEL From the FDA Osteoporosis Drugs' Safety Subject of FDA Panel - 9 Sep, 2011 http://www.drugs.com/news/bone-may-also-battle-breast-cancer-researchers-say-35253.html Be very careful on all of these drugs Beth.  *** What to use instead... 2000 mg calcium and Vitamin D3 in an OIL base pill. 3x day. More, does not help anything get better faster. One really good multivitamin (I use NatureMade from CVS for Women over 50), and I take 2 daily. Additional Vitamin K2, aka MK4 Also Strontium- But take these at night before you go to bed- on an empty stomach. Mail order or at Streu's which uses, and has ALL Enzymatic Therapy products. Garlic, the refrigerated variety, or Kyolic is best. Take 6 a day until you feel better.  DHEA http://www.nlm.nih.gov/medlineplus/druginfo/natural/331.html (Great article). http://www.worldhealth.net/news/dhea_supplements_taken_with_calcium_and_/ More articles: You HAVE TO READ THIS ONE: Janet's story; DEATH by Reclast (also a bisphosphonate) http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/death-by-reclast-janets-story/ Bone building medications destroy bone! http://www.laleva.org/eng/2006/04/bone-building_medications_destroy_bone.html I have a couple of appointments today... But now YOU have plenty of reading to do. I will send more later. Love to you always XOXO Me PS Oh yeah- and TELL YOUR DENTIST!!! Many dentists, mine included, refuse to work on patients that have had bisphosphonates. From here: http://www.dentalgentlecare.com/biop.htm Lots of links on that page, also: "Treatment drug may cause jawbone to die Breast cancer patients, individuals at risk for osteoporosis, and individuals undergoing certain types of bone cancer therapies often take drugs that contain bisphosphonates.  Bisphosphonates may place patients at risk for developing osteonecrosis of the jaws (a rotting of the jaw bones), according to  May/June 2006 issue of General Dentistry, the Academy of General Dentistry’s (AGD) clinical, peer-reviewed journal. Bisphosphonates are a family of drugs used to prevent and treat osteoporosis, multiple myeloma, Paget’s disease (bone cancers), and bone metastasis from other cancers. These drugs can bond to bone surfaces and prevent osteoclasts (cells that breakdown bone) from doing their job. “Healthy bones constantly rebuild themselves, however, since the jawbones have rapid cell turnover, they can fail to heal properly in patients taking any of the bisphosphonate drugs. Patients need to be aware of the possibility of complications from dental surgery or extractions.”  Since these drugs linger in the bone indefinitely, they may upset the cell balance in how the jaws regenerate and remove unhealthy bone. In their report, the authors refer to the case of a woman who received bisphosphonate therapy intravenously to treat metastatic breast cancer. She then developed osteonecrosis in her upper and lower jaws following tooth removal. “This type of osteonecrosis has been occurring since the advent of these drugs, at this time osteonecrosis as a result of bisphosphonate therapy has no treatment.” end copied material List of Bisphosphonates, + their generic versions in this section: List of Bisphosphonates | Antiresorptive medicine | Alternative treatments to bisphosphonates  A list and description of bisphosphonate medications Bisphosphonate medications have been linked to severe injuries such as femur fracturing. Other side-effects of the drugs, such as brittle bones and osteonecrosis of the jaw, have not and are not being properly disclosed to the public. Weitz & Luxenberg is working hard at rectifying this problem by providing you with up-to-date information and helpful resources on bisphosphonates. On this page, you will find a list of the various types of bisphosphonate drugs and information about each one. A list of bisphosphonates: Fosamax - generic name: alendronate - One of the more popular bisphosphonates, Fosamax is manufactured by Merck & Co. It is prescribed most commonly for osteoporosis and comes in a tablet form, but is also available in liquid form for those that have difficulties swallowing. Fosamax Plus D - generic name: alendronate/cholecalciferol – Similar to Fosamax, Fosamax plus D contains another chemical (cholecalciferol) which is a form of Vitamin D, and aids in the absorption of calcium. Zometa - generic name: zoledronic acid – Prescribed mostly to cancer patients, Zometa helps treat abnormally high levels of calcium in the blood. Didronel - generic name: etidronate –This medication is commonly used to treat Paget’s disease (a disease marked by the abnormal enlarging of bones), however doctors have been known to prescribe Didronel for other bone conditions. Reclast - generic name: zoledronic acid – This medication is used to treat a number of bone conditions including osteoporosis, Paget’s disease, and for preventing the onset of osteoporosis. Boniva - generic name: ibandronate –This drug is prescribed to women who have, or at risk of developing, osteoporosis. Boniva is supposed to slow bone loss, and increase bone mass. Actonel - generic name: risedronate –This is another multi-purpose bisphosphonate used for bone conditions. It is available in tablet form. Aclasta - generic name: zoledronic acid –This is a more all-purpose form of Zometa, which is used primarily for cancer patients. It is administered with an injection into a vein, or slowly via an IV. Aredia - generic name: pamidronate –Another bisphosphonate drug administered in liquid form directly into the bloodstream. This medication is used mostly for cancer patients with high levels of calcium in the blood. Atelvia - generic name: risedronate –This drug is a delayed-release form of Actonel used to treat postmenopausal osteoporosis. It is available in pill form. Skelid - generic name: tiludronate – This medication is used primarily to treat Paget’s disease. It is available in pill form and usually taken in regular intervals or as prescribed by a doctor. It is important to note that all bisphosphonates contain severe health risks.  Taking any one of the medications listed above puts you at risk of: Brittle bones Femur fracture Esophageal cancer Esophagitis Osteonecrosis of the jaw Plus, a host of additional side-effects that range from person to person (drugs.com).

end of note to Beth
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Through a link to BHG magazine, came this scolding from the FDA- 

From one year ago!

 

"To earlier generations of TV viewers, Sally Field was known as the Flying Nun, but Genentech has succeeded in transforming her into something else - a modern-day marketing symbol as the official Boniva pitchlady. And her cherubic face and down-to-earth demeanor have helped Genentech considerably, since the ads for Boniva - which is approved for preventing osteoporosis in post-menopausal women - have become widely recognized staples in the media.

But Genentech runs the risk of sullying this success with ads that contain misleading info. And that’s what the FDA says it found in one recent print ad featuring Field in the December 12, 2010, issue of Parade magazine. The ad contained this line just under a picture of Sally: “Studies show, after a year on Boniva, 9 out of 10 women stopped and reversed their bone loss” 
The agency, however, says this “misleadingly overstates the efficacy” because the claim is not supported by substantial evidence or substantial clinical experience.  
Also,
*** The FDA does not require a public retraction of this misleading ad! 

Then there is the sad, but true "Boniva: What If Sally Field Told the Truth?"

By Vivian Goldscmidt -A REAL rewrite of the commercial as it should have aired. 

Nominally entertaining to those of us that have been dx'ed with osteoporosis. 

I only wish that Ms. Vivian had the re$ource$ behind her to release her own ad on TV for everyone.

Of course it is ultimately YOUR choice as to whether or not to subject your body to something that will ultimately destroy it.

Like CHEMO treatments, these chemicals remain in your body for decades!!!

XOXO
Me

"brittlebones" pic from here

sally field ad pic found here

DEATH BY RECLAST.

http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/death-by-reclast-janets-story-1/
National Osteoporosis Foundation Support Community - Inspire
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Hi everyone, and thank you for doing the click above-

This is the drug I had been given in March. I am due for another infusion of the same next March...
I don't think I will be having it. It seems as though, perhaps, I have lucked out; by bypassing these awful side effects- especially those that cause death!

After reading many stories, (not all as sad, yet, as this one), I am thinking that perhaps I did not do my necessary homework as well as I should have.
Shame, shame, SHAME on me.

As I replied to my letter, "I have a dentist appointment tomorrow- A referral. Casey has written and said she would come out early- Having her here should calm me down a bit. I have NO idea what they will think to do with my mouth.
I saw an ad on the TV, late-night, a while back- and it was for some device that fits over your existing teeth. I will ask them about that. I just hope they don't think they will be pulling any teeth. That is *not* going to happen.
And I do realize the %'s would be in my favor. (Then again, I think about how my luck goes). Not sure I would ever care to take the risk.
Maybe teeth are overrated?" (But heck, I don't like pudding)!!!

XOXO
Me
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PS
I had written to Polly earlier.
Part of her reply was this: "I don't know much about those injections you get in your back--I'll call and talk to you about that but maybe will wait a day or two to see how it is going. It still sounds to me like you are trying to do things that you shouldn't do, which could make things worse (which you know and I promise to quit saying now). I don't think you made a mistake trying the bone density drugs given your stage of osteoporosis--you had to try something and who knows--they may help build up some bone.
Some bone is better than no bone and that jaw thing happens with all of those kinds of drugs and it doesn't happen to a very high percentage of the women taking them (I think it was less than 1%---having said that I am still glad that I got off the Fosomax because I wasn't bad enough to use it long-term;
However, my mother had been using it for many years with no problems).
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So who knows?
Maybe I really *am* one of the lucky ones...