[kullybunnny1]

Re: Is my bone damage permanent?

by kullybunnny1 on Thu Dec 18, 2014 12:34 pm

I found this existing thread in regards to multiple myeloma and bone damage and it answered some of my questions, but I still have one more.

I've posted about my extensive bone involvement and, after my last Zometa treatment, I asked my oncologist if after 2 years my treatments would end. He answered No. I would continue treatments for the rest of my life. I've read about concerns of secondary cancers and jaw bone damage, so here's my question:

Who is best qualified to tell me when I can trust my bones to not fracture?

My neurosurgeon punted the question to my oncologist, my oncologist punted the question to my myeloma specialist. My multiple myeloma specialist punted the question to my neuroradiologist who said that my bone strength is currently at a 4 on a scale of 1 to 10. He also said that long-term Zometa treatment could be problematic.

I get overwhelmed with data and statistics. After yet another skeletal survey is scheduled (I'm told that I'll get them every 6 months). Will I ever get an answer that I can provide my employer in regards to any concerns about bone fractures and how it affects my work abilities?

Thanks in advance for any advice.

Kully

[Dr. Adam Cohen]

Re: Is my bone damage permanent?

by Dr. Adam Cohen on Fri Dec 19, 2014 8:14 pm

Dear Kully,

Usually the decision to continue bisphosphonates like Zometa would be made by your oncologist, in consultation with your myeloma specialist. Unfortunately, while there is good consensus about treating for 2 years, we really don't have any good data to guide us on whether to continue after this point, how frequently to give it, and for how long. Thus, this becomes an individualized decision for each patient, based on how much bone damage they have sustained from myeloma already, their degree of remission (i.e., are they in a complete remission, or do they still have some active myeloma?), and patient and doctor preference.

I would talk to your myeloma specialist again, if possible, to discuss the pros and cons of continuing versus stopping in your particular case.

Good luck!

[kullybunnny1]

Re: Is my bone damage permanent?

by kullybunnny1 on Fri Dec 19, 2014 9:09 pm

Thanks for the response Dr. Cohen. I had a VGPR, so I still have an active disease. I just want so bad to push my body and have always had little patience. I'll continue my reading on this disease and trust my medical team on how to best to continue my journey of my new normal.

Thanks again!

Kully

[mikeb]

Re: Is my bone damage permanent?

by mikeb on Sat Dec 20, 2014 12:34 pm

Hi Kully,

As one more data point for you - Earlier this month I had the same discussion with my myeloma specialist. I will have been on Zometa for 2 years (monthly) in March or April 2015. When I reach that point, he wants to move to a once-quarterly dose.

Mike

[Anon1]

Re: Is my bone damage permanent?

by Anon1 on Sat Dec 20, 2014 4:19 pm

Hi Kully,

Some recent information concerning bone growth and repair may be of interest. The original article "Citrate bridges between mineral platelets in bone" is found here

E Davies et al, "Citrate bridges between mineral platelets in bone," Proceedings of the National Academy of Sciences, April 8, 2014 (full text)

An easier to read summary is found at

http://www.cam.ac.uk/research/news/shock-absorbing-goo-discovered-in-bone

I was on Zometa monthly for two years then quarterly for an additional year.