[Beacon Staff]

Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by Beacon Staff on Wed Oct 03, 2012 10:51 am

This week’s poll is about the use of bisphosphonates to prevent, slow down, or repair bone damage caused by multiple myeloma.

A few clarifications:

This poll is for anyone who has been diagnosed with symptomatic multiple myeloma or who has been treated for smoldering myeloma.

If you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.

As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers. In particular, if you selected 'Other,' please describe what bisphosphonate you are taking in the comments section. If you are not currently taking a bisphosphonate but have in the past, please feel free to share that information below.

[Dotty]

Re: Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by Dotty on Wed Oct 03, 2012 8:27 pm

Greetings,

Does anyone out there know what the standard of care re: how many years a multiple myeloma patient should or will be taking Zometa.

[Nipon Ginko]

Re: Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by Nipon Ginko on Thu Oct 04, 2012 7:33 am

Dotty I do not have a complete answer to your question , but I took Zometa for about 6 months in 2006 & needed to have some extensive dental work so was removed from the program due to posibilitys of disasterous damage to jaw bone won't go into dental details here but my oncologist decided I was doing ok with out the Zometa and I have never returned to that program & am still doing relatively well with out it ! N.G.

[GeorgeLJurak]

Re: Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by GeorgeLJurak on Thu Oct 04, 2012 12:39 pm

I have read that Bisphosphonates, such as, Zometa, are to be taken for 2 years, unless tooth removal is required, then it should be stopped because of ONJ.

[Nanette]

Re: Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by Nanette on Thu Oct 04, 2012 6:19 pm

Dom was originally on Aredia, which knocked him out. For the first 6 months or so, he resigned himself to the fact that he was going to spend the entire next day in bed. Muscle cramps, weakness, flu-like symptoms.

They changed him over to Zometa after about a year. He was able to tolerate that well.

I had to quit taking BONIVA for the same reason..... once a month was tolerable, but when my insurance switched me over to a weekly dose, I quit. And that's probably 100th the strength of Aredia! (or less!)

[Gilsiegel]

Re: Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by Gilsiegel on Mon Oct 08, 2012 1:49 pm

Zometa every 3 months,had 2 stem cell transplants last one 12/9/10
So far so good.about 24 hrs after infusion get flu like symptoms for a day,good to go after good night sleep.exercise as much as possible no restrictions 63 with non-secretory

[lys2012]

Re: Weekly Poll - Bisphosphonates For Myeloma Bone Disease

by lys2012 on Wed Oct 10, 2012 11:10 am

I took Pamidronate for two years, then decided to stop it, since an indefinate time frame would not work for me since I am still in my mid 30's.

Before stopping I did a dexa scan, and a spinal MRI to make sure there were not any continued signs of damage. It came back fin so I stopped.

The next month I started having back pain again, and have had some mild on and off pain since. The pami was really blocking the bone pain that I had forgot I had! (Reason I went on Pami was multiple thoracic lytic lesions which have now disapeared)