I was recently diagnosed with Stage IIIb multiple myeloma. I have some kidney damage due to hypercalcemia. I have started on RVD [Revlimid, Velcade, and dexamethasone] and see some improvement in my blood work. BUN, creatinine and calcium numbers are now in the normal range.
I recently read on the Beacon about a person being on RVD plus Zometa. This drug was not mentioned to me by my doctor, who is a multiple myeloma specialist. Is this something I should be inquiring about?
Forums
Re: Should I be on Zometa?
Hi,
I'm assuming you're in the U.S. if you're receiving RVD as your initial therapy. In the U.S., it's my impression that most myeloma patients are given Zometa if they're given a bisphosphonate. However, some receive Aredia instead of Zometa.
Are you perhaps getting Aredia?
I'm assuming you're in the U.S. if you're receiving RVD as your initial therapy. In the U.S., it's my impression that most myeloma patients are given Zometa if they're given a bisphosphonate. However, some receive Aredia instead of Zometa.
Are you perhaps getting Aredia?
Re: Should I be on Zometa?
Hello Spirit,
Terry's question is a good one. It may be you are being treated with a drug similar to Zometa (Aredia), in which case you don't need to be concerned.
Both Aredia and Zometa are drugs known as bisphosphonates. Treatment with bisphosphonates is recommended for newly diagnosed myeloma patients. See this article, which summarizes the relevant International Myeloma Working Group recommendations:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, Jun 26, 2013
The full text of the recommendations can be viewed here:
E Terpos et al, "International Myeloma Working Group Recommendations for the Treatment of Multiple Myeloma-Related Bone Disease," JCO, May 20, 2013 (link to full text)
If you're not being treated with either Aredia or Zometa, and given that you are seeing a myeloma specialist, there probably is a reason, so I would suggest just asking the next time you meet with your doctor.
Terry's question is a good one. It may be you are being treated with a drug similar to Zometa (Aredia), in which case you don't need to be concerned.
Both Aredia and Zometa are drugs known as bisphosphonates. Treatment with bisphosphonates is recommended for newly diagnosed myeloma patients. See this article, which summarizes the relevant International Myeloma Working Group recommendations:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, Jun 26, 2013
The experts recommend that bisphosphonate treatment should be started in all multiple myeloma patients receiving anti-myeloma therapy, regardless of whether they show detectable bone lesions on x-rays, and in myeloma patients with osteoporosis or osteopenia (somewhat reduced bone density) resulting from myeloma.
The experts add, however, that it remains unclear whether treatment with bisphosphonates has a clinical benefit in patients who do not show bone lesions on magnetic resonance imaging (MRI) or positron emission tomography/computed tomography (PET-CT).
The full text of the recommendations can be viewed here:
E Terpos et al, "International Myeloma Working Group Recommendations for the Treatment of Multiple Myeloma-Related Bone Disease," JCO, May 20, 2013 (link to full text)
If you're not being treated with either Aredia or Zometa, and given that you are seeing a myeloma specialist, there probably is a reason, so I would suggest just asking the next time you meet with your doctor.
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JimNY
Re: Should I be on Zometa?
It may be that you doctor is being careful because of the kidney damage. As suggested previously, ask your doctor about this.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Should I be on Zometa?
Spirit
For whatever it's worth, I had off the charts high risk multiple myeloma when I was first diagnosed. My hip bones and skull looked like Swiss Cheese from all the lytic lesions. Once it became somewhat clear that I might actually live (yes, the odds were way against me), and that I was responding favorably to the RVD regimen, my Dr then added Zometa.
Yes, I had side effects from the RVD. You know, the usual PN, extreme fogginess etc., but those were nothing compared to the bisphosphonates (yes, I tried all of them, 3, I think?). I told my Dr that unless he thought my life depended on it, I did not want to take those drugs!
Although he was hesitant, he did finally admit that he'd never actually seen compelling evidence that the bisphosphonates help (what!!!! I thought?). He took me off them, and guess what? My lesions healed, well as much as lytic lesions ever heal. At least my bone pain disappeared.
For me, it was an extreme "quality of life" issue. I have never regretted discontinuing them.
Best to you
Daniel
For whatever it's worth, I had off the charts high risk multiple myeloma when I was first diagnosed. My hip bones and skull looked like Swiss Cheese from all the lytic lesions. Once it became somewhat clear that I might actually live (yes, the odds were way against me), and that I was responding favorably to the RVD regimen, my Dr then added Zometa.
Yes, I had side effects from the RVD. You know, the usual PN, extreme fogginess etc., but those were nothing compared to the bisphosphonates (yes, I tried all of them, 3, I think?). I told my Dr that unless he thought my life depended on it, I did not want to take those drugs!
Although he was hesitant, he did finally admit that he'd never actually seen compelling evidence that the bisphosphonates help (what!!!! I thought?). He took me off them, and guess what? My lesions healed, well as much as lytic lesions ever heal. At least my bone pain disappeared.
For me, it was an extreme "quality of life" issue. I have never regretted discontinuing them.
Best to you
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Should I be on Zometa?
Thank you for your thoughtful responses. Yes, I do live in the U.S., and no I am not on Aredia either. My scan showed no bone lesions or osteoporosis / osteopenia. I will definitely ask my doctor about this at my next appointment.
Thanks for the advice!
Thanks for the advice!
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Spirit525
Re: Should I be on Zometa?
At diagnosis in August 2011, I had kidney impairment and did not have bone problems. I was treated with RVD and achieved complete remission. I am still in CR and am on 5 mg Revlimid 3 weeks monthly and 12 mg of dex weekly.
I have never been treated with Zometa or Aredia. I do not have bone involvement. My doctor said that I did not need bisphosphonates at the time of induction therapy. It has not been brought up again, yet. Maybe less is more, sometimes!
Good luck!
I have never been treated with Zometa or Aredia. I do not have bone involvement. My doctor said that I did not need bisphosphonates at the time of induction therapy. It has not been brought up again, yet. Maybe less is more, sometimes!
Good luck!
Re: Should I be on Zometa?
Thanks, Usanb, for your encouraging post. If you don't mind sharing, what stage were you originally diagnosed with?
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Spirit525
Re: Should I be on Zometa?
My husband was doing Zometa for a few months during his initial therapy. It was discontinued due to kidney issues. So that is often a consideration.
Re: Should I be on Zometa?
I have been receiving Zometa through an IV and, at first, got bone pain, then extended the IV time from 15 minutes to over 30 and had no pain and continue to receive the infusions.
Except, for now, with dental work planned, this is my major concern. The Zometa treatment can cause dental pain and, if you receive it during dental work, you could get other jaw and tooth destruction that is uncurable and lead to total destruction of both. That is the touchy part.
Except, for now, with dental work planned, this is my major concern. The Zometa treatment can cause dental pain and, if you receive it during dental work, you could get other jaw and tooth destruction that is uncurable and lead to total destruction of both. That is the touchy part.
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Big Bill
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