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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

Zometa infusions

by gardengirl on Wed Apr 23, 2014 1:05 pm

Hi Fellow Smolderers, Just wondering how many of you have started Zometa infusions. I know several of you have already (with side effects varying from mild to severe). My doctor said it is not a must, but an option; that it decreases fractures and pain by 50% and has been shown to improve overall survival. Thank you!!!

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Zometa infusions

by Multibilly on Wed Apr 23, 2014 1:17 pm

Gardengirl,

Does your DEXA or MRI suggest that you have any bone loss? When I've discussed this before with my docs, they have stated that they usually only consider Zometa when bone loss comes in to the picture, or you've become symptomatic.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Zometa infusions

by gardengirl on Wed Apr 23, 2014 2:35 pm

No, I have no bone issues nor CRAB at this time...that's why I'm conflicted! I have an appointment scheduled, but I'm considering waiting another month or two. However, the increase in OS is tempting...need to find evidence to support that.

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Zometa infusions

by AliceNorth on Wed Apr 23, 2014 5:07 pm

Hi

I have myeloma and amyloidosis. I have no bone issues, but I receive monthly zometa because it apparently has an anti-myeloma effect. I have been in complete remission for nearly 3 years after 6 cycles of CTD.

Alice

AliceNorth

Re: Zometa infusions

by Multibilly on Wed Apr 23, 2014 6:48 pm

Gardengirl,

I assume you saw this earlier Beacon article?

https://myelomabeacon.org/news/2013/06/26/treatment-recommendations-multiple-myeloma-bone-disease/

...and this comment from Dr. Hoffmeister, who says you should be careful using it long term and that you aren't really addressing the disease with it:

https://myelomabeacon.org/forum/why-zometa-t3103.html

And then there is this article which says you shouldn't consider it for SMM:

http://bloodjournal.hematologylibrary.org/content/121/17/3325

And here is Dr. Shain's opinion, who says one should consider it for high risk SMM under certain circumstances:

https://myelomabeacon.org/forum/high-risk-smoldering-myeloma-t2256.html

This s$%t is never clear, is it??? ;-) But given that your are Ultra-High-Risk SMM, that might put a different spin on things and cause the doctor to think of you more like a symptomatic patient from a Zometa standpoint?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Zometa infusions

by gardengirl on Fri Apr 25, 2014 10:31 am

As always, thank you, Multibilly! You have provided very helpful resources. After discussing my concerns/conflicts with my doctor, we have decided it's ok to wait 3 more months before we start (yeah!). Although my numbers are still in the normal range, they are creeping to the upper limits.

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Zometa infusions

by Jacqueline on Mon Feb 16, 2015 9:52 am

Hello,

I saw my hematologist today (a professor of hematology). He told me that I'm quite well, but he wants to start Zometa.

On the MRI, there is a small and partial suspicious lesion in L12, and the hematologist is still talking with the radiologist, and, to be sure, I can have again MRI control.

Also, the densitometry shows osteopenia (I am 58 years old).

He also told me that my gammopathy can remain stable and progress very slowly (or jump in one shot), but one day there will begin chemotherapy.

He also said: Either you trust me, or you see another doctor (he speaks quietly but firmly).

I left very unhappy.

I read a lot, and Zometa is not trivial.

I do not have anemia: 11.7 (n: 11.5 to 16)
Creatinine: 8 (n: 5.1 to 9.5)
Calcium: 101 (n: 88 to 106)
C reactive protein: 2 (n: 1 to 5)
Beta2: 3 g / L (n: 2.3 to 4.7)
M-spike: 15.2 g / L (1.52 g/dL)

What to think?

Thank you,
Jacqueline
IgG kappa

Jacqueline
Name: Jacqueline
When were you/they diagnosed?: november 2010
Age at diagnosis: 53

Re: Zometa infusions

by Multibilly on Mon Feb 16, 2015 10:01 am

Jacqueline,

So, you will be getting an MRI?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Zometa infusions

by Jacqueline on Mon Feb 16, 2015 10:51 am

Merci Multibilly,

I had an MRI, and the doctor didn't want to give me a copy of the result.

He has to speak before with the radiologist to interpret the image and, perhaps, make me do another MRI (more enlarged to see very well, if I understood).

But he wants to begin the Zometa and is a professor of hematology.

I am worried.

Jacqueline
Name: Jacqueline
When were you/they diagnosed?: november 2010
Age at diagnosis: 53

Re: Zometa infusions

by Multibilly on Mon Feb 16, 2015 11:03 am

I would try not worry and would instead be grateful that your doctor is being thorough and careful. While I'm not a doctor, early Zometa treatment sounds like a prudent step given you have osteopenia and some potential lesions.

To help put your mind more at ease, you might want to read through this document, and pay attention to the FAQ 4 section.

http://www.berensononcology.com/introduction-to-myeloma/

When I was first being diagnosed and the doctors thought I might have some early lesions, each one of my specialists had discussed the idea of early Zometa-ony treatment with me (but I ended up not having any lesions and it was later confirmed that I had no signs of osteopenia, so we didn't go down that path).

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

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