Hey Steph and any others on Zometa
 

Just wondering about your experiences on this drug.

My oncologist wants to start me on twice a year infusions for 3 years. I've had osteopenia for over a year and the calcium and vit D don't seem to be making a difference any more.

So, as soon as I find a new dentist (been on my to do list since we moved last year) and get clearance that my oral health is ok, I will start the Zometa.

Besides the achy bones and possible flu like symptoms after infusion, are there any BIG negatives that you know of.

Thanks,

Kim

Re: Hey Steph and any others on Zometa
 

Hey Kim,

As long as you don't stay on any bisphosphonates or combination there of for more than five years, I think Zometa is a good choice.

It increased my bone density, but unfortunately I was unaware of the risk of atypical femure fractures with long term use. I was on Zometa for seven years and stopped when I was diagnosed with these fractures in both legs. I am still dealing with the fractures a year and a half later with very little healing.

Just be aware should you develop any thigh or perceived hip pain during use which could indicate an issue.

Also, please discuss this side effect with your doctor to be sure they are aware of of this possible side effect.

Best of luck to you.

Re: Hey Steph and any others on Zometa
 

Hi Kim -
I took a LOT of Zometa beginning just as I finished my treatment for mets. Took Zometa every 3 weeks along with Herceptin.

Never did anyone ask me to get a clearance from my dentist. I do go on a regular basis and have teeth cleaned and old fillings replaced from time to time.

I restarted Zometa this year after a long stoppage. Just had the one dose a couple of months ago and did not notice anything in the way of side effects. When I was taking this drug so regularaly, it was hard to know what was left over from all the chemo and if any of the longer lasting side effects had to do with Zometa, which I had never before taken. (But I really think not, as I had taken a lot of chemo on a weekly basis.)

It is not due to suspecting the calcium and D3 I take is ineffective that I restarted Zometa on the twice yearly basis. Rather to do with my age and all the previous damage to my bones, and I am on the smaller boned side.

Re: Hey Steph and any others on Zometa
 

Sassy -
Sorry to hear you are not getting much healing from your fractured femurs.

Your signature does not say what year you began taking Zometa nor the frequency.

Re: Hey Steph and any others on Zometa
 

Hey Steph,

I began Zometa about a year after DX and had it twice a year. I'll update my signature to add that info.

AFF's are certainly not the norm, but lucky me was the "small percentage"!

Re: Hey Steph and any others on Zometa
 

Hi Sassy,

Thanks so much for your reply. I am so sorry to hear of the complications you experienced on the Zometa. I can not even begin to imagine how terrible that must be for you.

After reading your post I was able to find some more info on AFF's so I can discuss further with my oncologist.

Thanks again, and hopefully you will see some healing soon.

Kim

Re: Hey Steph and any others on Zometa
 

Hi Steph,

Thanks so much for your input. Wow, I didn't realize you had been on and off Zometa for so long.

A few years back I was borderline osteopenic, but after kicking up my Vit D and calcium intake, was able to see an improvement on future bone density tests.

Unfortunately I think the Femara I've been on since 2001 is starting take it's toll on my bones, and my doc thinks it's time to start the Zometa.

Incidentally, I've always been troubled with poor dental health. I've got more root canals and crowns than I care to mention, and even one implant.

So, I was really worried about the osteonecrosis of the jaw that I've read about. Hence, my doc wanting me to get dental clearance before starting Zometa.

Were you ever osteopenic, or was the Zometa mainly a preventative for any future bone mets?

Thanks,
Kim

Re: Hey Steph and any others on Zometa
 

Hi all
Thank you so much for the information. I was just about to post asking the same question as Kim!
I was diagnosed with osteoporosis two years ago when a ct scan showed small fractures in my hips. Have been on calcium and vit d3 but things don't seem to have improved I'm told I'm a high risk for fractures. The endocrinologist wants me to have a yearly infusion of zometa now he's run all the blood tests. I also have to have my dentist do any necessary work before starting.
I suspect the osteoporosis was chemo induced but can't seem to find out if long term herceptin also has an impact??

I have recently started working with a therapist doing weight training , strictly controlled but working on hips ,spine and wrist. It's too early to say if its improving my bone density BUT a lot of the aching and stiffness has resolved!

Ellie

Re: Hey Steph and any others on Zometa
 

Thanks for asking this question! I have been on twice yearly zometa for over 10years without any problems, and did not realize the aff problem. I had thought it only applied to those taking it on the 6week schedule. Will have to discuss with my Onc.

Re: Hey Steph and any others on Zometa
 

Kim, I had to get clearance from my dentist too and just get one iv infusion once a year for Osteopenia, after three treatments my bones are showing great improvement already. I was told only the first infusion would bring flu like symptoms and this proved to be true for me and hope you do well on it too.

Re: Hey Steph and any others on Zometa
 

Hello Kim & everyone -

My bones have shown some continual slight degeneration at femoral neck, and Zometa seemed worth a try to arrest that. I have been taking my calcium and D3 with some positive result, but even with a good diet some areas continue a slow decline for my age matched numbers. Right now my lower lumbar spine is noted on my last CT scan. This is the area where I had a surgery on L4 two years ago.

I will be very interested to see the report from my next bone screening after 3 every-6-month Zometa infustions.

Ellie - interesting you bring up long term Herceptin and whether that may have an effect on our bones. I think I will pose that question to my oncologist. She does have a special interest in bones. I never thought of that as a possibility and not sure how the science could support that theory.

Re: Hey Steph and any others on Zometa
 

Just got a reply to my query on whether Herceptin could have a negative effect of our bones.

My oncologist says:

"Herceptin has no effect on bones. You took zometa to try to prevent bone recurrence. But you can get too much zometa in your bones and that can paradoxially lead to fracture (even though it's a bone strengtheing drug, too much exposure leads to diusrupted bione formation that doesn't have any "cushion" effect when you fall)."

Perhaps Sassy had other risk factors for her fractures? Any falls or jumping up and down? But here is the answer to how Zometa can have a negative effect - disrupts BIONE formation. Something else to look up!

How much bione do we have? Is the amount different in each of us? What else affects bione? Etc., etc ...

Re: Hey Steph and any others on Zometa
 

Hi Steph
Thanks for posting about herceptin not having a negative effect on bones. I hadn't been able to find this out and wondered if this may be a cause. I haven't had aromatise inhibitors so I assume my osteoporosis was induced by chemotherapy. Like Tricia it's proposed I have one infusion a year so will see how that goes once my dentist has given me the go ahead.
Ellie

Re: Hey Steph and any others on Zometa
 

Thanks Steph and good luck Ellie, hoping for the same response I had for you.