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Zometa Side Effects? . . .

Lr24
  • By Lr24
  • Posted June 21, 2009 at 5:17 pm · 27 replies
  • In Recurrence
  • Shared with the public
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I have been taking Zometa for about two years now with no noticeable side effects; however, now I think I might be having some and was wondering if anyone has experienced something simiular? I have pain on my left temple/jaw area (right in front of my ear). When I touch that area, it is very tender. Also, my neck is sore (like I slept funny or something). I remember my onc. mentioning awhile back about possible Zometa side effects and I didn't think much about it because I wasn't having any symptoms at that time. Zometa is suppose to strengthen bones (I have mets to my bones in spine and hip area). So I guess it could cause pain in bones.

Has anyone noticed any pains from Zometa? Just wondering.

Explore topics in this discussion:

Cancer Arthritis Aleve Advil Ibuprofen Fractures Avastin Pain Gum disease Osteonecrosis

27 replies

crazygracie

Hi,
Did you get a brochure when you began taking your Zometa? You should let your Onc. know about your jaw because Zometa can cause some kind of jaw problems. I don't recall the name, but you can look it up on the Internet! It can become serious, so please be sure to check it out.
Take care,
crazy gracie

Lr24

Hey thanks crazy gracie! No I don't remember getting any brochure when I started taking Zometa. I have already emailed my onc - so hopefully I will get some info back from here tomorrow. I sort of remember something like also - I will check online.

Beachbabe

They've found Zometa can cause osteonecrosis of the jaw. I was on it for two years, but having horrible side effects the whole time. One of the side effects was a painful burning sensation in my sinus area. Once the onc heard that one too many times he said, "We're going to risk taking you off Zometa as it can also cause osteonecrosis of your nasal cavity." Good grief...a whole in my nose?????

So far, so good...I'm no longer laid up one week out of the month from the IV and I haven't noticed any increased problems (knock wood!!!)

Talk to your onc, just to be sure! Better safe than have a hole in your head, I always say...

margaret27217

I just discontinued Zometa, at my request, because I'm having teeth problems. The dentist, endodontist, oral surgeon, and my onc. can't find anything going on, I asked "Is there any reason why you can't take me off Zometa?" She said, "No, I'll just keep you on a short leash and watch your tumor markers more often". Yea! I hate that stuff!! Like BeachBabe, I have side effects that incapacitate me for a few days each month and I'm happy to get those days back!!

kleighk

I don't remember having any side effects at all until about a year ago. Now, I get achy and just plain yuch for about a week after. I have problems with my teeth, but they've done xrays and have determined that I don't have osteonecrosis. Generally, I think that doesn't show up until after you have dental work, as it is a problem with the healing of the jaw after a trauma like tooth extraction.

I'm sportin' a toothache now from a broken tooth so I'm off to the dentist, and hopefully there will be no problems. I've been on Zometa for 7 years, so coming off for a couple of months before dental work seems kind of mute as the effects can last for years. Wish me luck!

Momofthreeaz

I had the same experience last year while on Zometa, Abraxane and Avastin. I would wake up at night with pain in my neck, jaw and ear. I went to my M.D. first and he diagnosed an infection in my ear and put me on antibiotics. I felt better the next day. The meds we are on depress the immune system, so check the simplest things off first, like and infection and go from there. Also, from what I have read, the osteocrenosis sets in if there is severe trauma to the jaw like tooth extraction or root canal work. I make sure to see my dentist regularly for cleanings and have cavities treated right away.

ElizabethA

I've been on Zometa for about 4 years. I am doing pretty well on it. I go for treatment and then right to work. I just had root canal and everything went well. My onc has now decided to give me the treatment every six months (I was getting it every 3 months). The only other pain I have is in my elbows. Don't know if it is from the Zometa. So far so good.

shirl5alive

I have only been on Zometa for about 6 months, and i didn't have any side effects at first. I am also taking Femara. I have started getting sore joints, some severe. My hand has really been bad. I wake up in the morning and can't close my fingers together at first. I have heard that Femara can cause joint and muscle pain too. Shirl

mom2acat

You should mention that to the oncologist; and you have any dental appointments coming up, tell the dentist too.

gasketman

Debi has used Zometa 18 months with some bone pain but not much. When she added Femara she had alot more bone and joint pain. She also had trouble with her hands on Femara.

Lr24, Debi did have head aches from time to time but we found that she needed more fluids on those days.
Do not know if that will help but our thoughts and prayers are with you.

Scott

Lr24

Thanks Gasketman! I should probably watch how much fluids I take in - I can really tell a difference when I'm slightly dehydrated (headaches, etc...) As of yesterday (Tuesday) the pain in my jaw has gone away - maybe it was partly for lack of fluids.

Femtazzie

I am also on zometa and femera. The Zometa can cause problems with the jaw - but luckily I don't have that. I do get "flu" like symptoms from it every month but they only last a couple of days so I can live with them.
The Femera on the other hand I have been on for a year now. That causes ALL my joints - especially my hands- to feel like they have arthritis. They can barely move in the mornings. I have found that taking aleve or advil helps them but this weather does not (RAIN).

I use a rubber ball every day with both hands squeezing it to wake my hands up in the mornings. It helps some. I ususually feel better after about an hour after my pills. I just make sure to work my fingers a lot during the day or they get stiff again. But the Femera has brought my numbers down and is less caustic than the next treatment option. Therefore as long as it works I will stay on it - side effects and all.

Terri

CSF

Yes, make sure you take plenty of fluids on the day of your Zometa infusion and for a day or two afterwards as it can also affect the kidneys.
Keep an eye on the jaw pain and let your doc and dentist know about it. Now you know about ONJ and it's link to Zometa. It is rare, but does happen.
I was on it for over 2 yrs and stopped due to concerns over ONJ (I have HORRIBLE teeth already - lots of caps, root canals et al). New research is showing that Zometa has a long-term benefit even after infusions are stopped.
I hope this is just a bump in the road for you (it probably is). Just be vigilant and do your homework, as you clearly are already.
Best of luck!

Jeanne46

After a year on zometa I DID develop ONJ. However, the jaw pain might be due to your bite - or biting too hard during the night. I was having trouble with that and it was solved by using a night guard provided by my dentist.

lusianagal

i was on zometa for a year and i DID get onj.. be verrrry aware of whats going on in your mouth. Ive lost a tooth and a major piece of bone on the bottom due to it....

Vintage

I'm on femara and zometa. The doctor gave me pain meds when I told him about the extent of my joint and bone pain. He knew pain could be a side effect and didn't question my request.

w1pamela

Hi,
I am on Zometa and Arimidex. I was fine on the Arimidex having no SE's. The Zometa on the other hand throws me for a loop for about a week and a half. I am happy I checked here as it seems to do that to more then just me. I thought I was a little left for normal. LOL I also get the pain in my left jaw, I do clench my teeth sometimes and I get a sinus type of headache but I am on Darvocet for pain in general, I take one every five hours for bones and arthritis. I also take Ibuprofen for the sinus pains. I get them at the same time everyday so I take two IBF 1/2 hour before I know the head pains will start. No other problems if I do that. Nothing has gotten worse but I have only been on it two months.

I was warned --- by the nurses --- loud and clear that for pain and before and after I get the infusion to load up on water. The first time I didn't and it was a problem. Now I do and the minute the head pains start I run for the water. Evidently it needs water to circulate.

THE MOST IMPORTANT thing is that there is a CTX blood test for susceptibility to ONJ (Jaw necrosis caused by Zometa.) Look it up online. Ask your doc for it. I did that last time I was in there and he ordered it and I will find out next week how it went. He was excited, he didn't know. It is a new test and if you look around on this site you will find a whole thread that talks about it as this is where I found out about the test.
Good luck, let us know how it goes.
PamW.

katzmeow

Many oncologists are switching Zometa treatments from monthly to quarterly, bi-yearly or even yearly after early studies at MSK found the benefits the same as monthly and the risks much less.
Research has also shown that ONJ can be triggered by Zometa or any other bisphosphinate with or without dental treatment. Having multiple crowns, root canals, etc does not increase the risk, nor does TMJ. As noted above, there also have been studies indicating that these medications may acutally prevent disease progression. I have been off Zometa for 1 1/2 yrs due to a growth in my mouth, but am going for a tx next month since my oncologist feels it is overdue. I have exhausted all the Aromatase Inhibitors, Xeloda and currently take Tamoxifen as a last resort before IV chemo. (past 7 months). Tamoxifen is another story, I am going to post a thread about all the problems I have with it.
Re: Zomeda, weigh all the pros and cons and discuss reducing the frequency with your oncologist. A few days of flu like symptoms may be a small price to pay considering the benefits such as met pain reduction. For someone like me with a dozen or so bone mets, Zometa is a necessary evil.

frannyv

Lr24,
I have ONJ (osteonecrosis of the jaw) caused by the Zometa. Make sure you see an oral surgeon as a precaution and have a panoramic xray taken and also discuss with your oncologist. ONJ usually occurs after a tooth extraction, but it rare cases, it can just happen. The studies have shown that in most cases, ONJ presents after being or Zometa for at least two or three years. It is also important for you to have dental cleanings every 6 months, and good daily habits. From what I have read, ONJ can be worse if it presents and the person already has gum disease and other dental problems. I wont bother repeating what I have written in another post, but you can search it under Osteonecrosis of the Jaw. What you are experiencing is probably nothing serious, but it is so important you get it checked out. I stopped my zometa in May 2008 when it was clear I was developing ONJ. My scans show no changes in my bone mets. I did however suffer two fractures while on the zometa, so it shows that it isnt always effective. Good luck and I will be praying for you!
Take care!

kleighk

In reading some of these posts, I noticed that several of you mentioned sore hands in the morning. I have had this symptom for several years, but didn't relate it to the zometa. In the morning my fingers are so stiff that it takes a bit to get them moving, especially if it's cold or damp outside. I thought I was just getting old!!

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