Death Of Jawbone

My husband was diagnosed over 2 years ago with Multiple myeloma and for over a year now has been
taking the Aredia treatments once a month. About eight months ago he started having problems with his gums in that bone was protruding out of the gum and has became quite painful and will not heal. I have done some reasearch and have found that Aredia has been linked to this problem. Has anyone else out there experienced this. We are not 100% sure but the oral surgeon he went to thinks it could be but needs some other test done. Would appreciate hearing from any one going thrugh this.

Thanks,
Shelia E.

Hi, My name is Brenda and my husband has Multiple Myeloma. We are also on the same bone strengthing as you. I went to the Dentist the other day for a check up. I took my husband with me because we thought he had a tooth growing back where he had one removed. Well the Dentist told us that it was bone and that he just read somewhere about a bone strengthing that causes it. He went and found his notes and it was the aredia and zofreda (I'm not sure of the spelling) They are the sameones my husband is on. He said it is a major surgery that we need to get with out cance Dr. We just went throught a stem cell transplant last Aug. So now I am worried about an infection setting in. Hopefully that won't happen. If I hear of anything I will write you. Brenda

Dear Brenda, So glad to hear from you. From the research I've been doing I think that our husbands must be the only ones going through this because from what I've read it doesn't effect all myeloma patients. It's very rare that this happens. Also read where the FDA is now including this warning label on these bone treatment product so I think there may be more myeloma patients just now showing up at there dentist wanting to know whats going on. Every time my husband has a treatment he has to sign a form saying that this bone treatment can cause other cancer. But it's also a combination of the chemo and he is taking thalimide(thalidomide) for his cancer and so far has been in remission for over a year. He had his stem cell transplant in Sept.03 and almost one year to the date he went into remission but then for that last 8 months he's been having this jaw problem and even the oral surgeons really don't want to mess with
this because of the damage it does. He also has been taking a supplement through Mannatech. His oncologist really pushed this product becausse of what it does for the immune system. He takes a product called Ambotrose. You might talk to you oncologist and see what he thinks but my husband believes this is what has kept him in remmission. He started taking it about a month after his transplant. It can be very expensive though and because it's not a drug insurance won't pay. But look at it over the internet. Also if they put your husband on thalidamide which is the only thing for this kind of cancer according to his stem cell doctor it can also cause problems. He can only tolerate 50 mg.a day. They would like for you to get up to 200 a day but it just made him feel so bad. I've heard that some patients are trying Velcade but I think thats for the ones that nothing else has worked.

Please let me know how this goes for you and your husband. My husband is just 59 and had to retire because of this cancer. He had been a Dallas Police officer for 31 years.

Take care of you too.

Sincerely,
Sheila

Hello, My husband Don is 48 and used to be a Union Carpenter. I am 41. We were diagnose over 2 years ago with Multiple Myeloma stage 3B. We are really lucky my husband is here with us today. He also has renal failure We have battled infections from his dialzysis lines. We are now doing home dialzysis. It is a full time job. Our 15 year old son helps out alot. I have a lady I met over the internet and her husband just died 8 months ago from MM. She lives in Tomball Texas. My husband was raised in Texas. In the Belton area. We live in Kansas. I know we aren't suppose give out our email address on this but I would really like to talk to you through my email. My email address is altontwin@yahoo.com When you email me for the first time say something about MM on the subject. We did Thalidamide. My husband couldn't take it. He took the velcade and it worked for him. We went to the dr last week and they said my husband is in remission since we had the transplant. But he is soooo weak. I finally got him up to 145 pds he got down to 115 pds. He dropped so fast when we were first diagnosed. He used to weigh 180 to 200 pds. They say this is a cancer from hell and I agree that it is. We are on the oxycontin and morphine for the his back pain. The leisions has hate away at his bones. He shrunk 2 inches from the compression of his spine. We never sign nothing at our Dr's about that bone strengthing. I need to look into it. I don't get to get on the internet very much because it is in our basement and I have our living room upstairs and I have a hosp bed in the living room. Don don't want me to stay away from him to long. He is scared to death. I am glad to hear from you and like I said email me at my email address cause I try to check it every couple of days. Thanks, Brenda

I have done some research on the Zometa,Aredia and Fosamax drug side effects and the latest estimates are that thousands, if not tens of thousands have or will lose their jaw taking these drugs.

This side effect is called by many names, "Bis-phossy
jaw", "Dead Jaw", "Jaw Necrosis, Osteonecrosis of
the jaw". The drug has other severe side effects also.


Cases have been reported since 2000 and yet it took
the drug company in late
2004 to admit that there is a link. The FDA has taken
Novartis(Zometa and Aredia) to task about
the delay and the methods used to inform the public.
Novartis says they have 875 reported cases to them
about people losing their jaw. Researchers believe
that this 875 number represents
only about 1 to 10 % of the people who have this jaw
condition from taking these drugs. So that means
thousands have or can be affected.

Now the warning is to have all your dental work before
you take these drugs
or don't have dental work at all while on the
drugs,and even then it can be risky.

You can find many articles on this by searching
Google,Msn, and Yahoo by typing in zometa side effects
or fosamax side effects

Here are many links that I found.

http://www.usatoday.com/news/health/2005-03-13-jawbone-death

http://www.myeloma.org/main.jsp?menu_id=0&tab_id=1&type=ARTI

http://www.cancerpage.com/news/article.asp?id=8122

http://online.wsj.com/public/resources/documents/SB110245057

http://sev.prnewswire.com/health-care-hospitals/20050506/CGT

http://www.fda.gov/medwatch/SAFETY/2005/zometa_deardentite_5

http://www.fda.gov/medwatch/SAFETY/2004/ZometaHCP.pdf

http://www.fdaadvisorycommittee.com/FDC/AdvisoryCommittee/Committees/Oncologic+Drugs/030405_iressa/030405_ZometaR.htm

Hope this helps

My mom had MM. She passed away a week ago today. Last May she started experiencing intense jaw pain. The pain would come and go and last 5 minutes to an hour at times. Her chin was numb as well as her lower lip. She had xrays, saw her dentist and an oral surgeon and had an MRI. Nothing was ever found to have cased the pain and numbness. She took higher doses of pain killers and the pain eventually stopped altho the numbness never went away. I am not this jaw pain had anything to do with her recent death. I am not trying to scare you but she also had Aridia treatments and something caused this strange pain. Hope this helps...please let me know if you found any answers. David in Seattle
Mom is Joan P. of Ohio.

David, So sorry to hear about your mom. My husband has been taking the aridia for almost 2 and half years and if I remember correctly he has had this bone coming through his jaw for some time before we new anything about the side affects but his oral surgeon confirmed that this was caused by the aridia. I was reading on the net the other day about these chemos like aridia and there's another one starts with a Z but can't think of it. Anyway the FDA is now putting a warning out with these products about what it can do. My husband had to sign a form before every bone treatment to not sue if any thing happened while taking this because of the possible side affects. His oncologist has agreed to take my husband off of the aridia for about three months to see if this will heal itself without having to do anything. If it were just the bone thing that wouldn't be so bad but it's the cancer itself. We were told on the very day he was diagnosed that there is no cure. He had a stem cell transplant Sept. 03 and that almost killed him but one year to the day after his stem cell tranlsplant Sept 04 he went into remission. He goes back this Sept. for another protein spike to check his cancer and praying he will still be in remission. But his stem cell doctor is very skeptical about this and has told him this will probably not last. Without the stem cell his survival rate was maybe 3 yrs. but with this it will give him maybe 5 years. He also takes thallimide (thalidomide) to keep the cancer from growing but there are side affects from that he experiences numbness in his hands and feet and also pain. But the worst pain is in his spine that's where the MM was found. I don't believe he had any tumors but the MRI revealed alot of damage from the cancer. He was in stage 3 when diagnosed and had just celebrated his 57th birthday. And you know with cancer, you have it way before it's diagnose and from what they could see from the MRI he probably had it at least 6 mos. to a year before really getting sick. So this is where we are but I have discovered since my husband became ill about every other person we know has been diagnosed with some form of cancer and it not only affects the one diagnosed but forever changes your families life. So we are grateful at this point just to have one more day even if there is some pain because I feel it too.

I hope each day gets a little easier for you and your family because the way I look at and from what my husband says at this point after going though so much he's just ready for it to be over with so maybe your mom and all those that suffered so much with this horrible cancer or any terminal illness are the lucky ones.

Sincerely,
Shelia E.
Garland, TExas

TY for writing back, Sheila. You and your hubby are in my prayers. My mom did not have any bone protrusions. That is why the docs and dentists were stumped. With bone protrusions, I believe it is called osteonecrosis of the jaw. Be very careful about radical surgery with this. Get 2-3-4 opinions before making any decisions. That is what I learned thru my research.
Enjoy each day with your family. There wll be some very good days ahead and some some very scary days. Bless you.
David, Seattle WA