My husband just had his second appointment with his myeloma specialist. His numbers are holding fairly low with M-spike = 1.18 g/dL (11.8 g/l) and IgG light chains = 91 with an free light chain ratio of 8.
However, his dex scan showed pretty bad osteopenia with -2 in the back vertebrae (I guess that is pretty close to osteoporosis).
He will begin Zometa infusions every month. Our doctor says he will get Zometa every month - without ending - as he feels that Zometa has an anti-myeloma effect in that it helps keep smoldering myeloma patients from progressing as a result of minimized myeloma bone issues, thereby prolonging the need to begin myeloma therapy with Velcade, Revlimid, and dexamethasone (VRD) and other drugs.
Is it common for someone with smoldering multiple myeloma to be treated with Zometa monthly, and if so, for how long? Also, how common are cases of osteopenia / osteoporosis like my husband has? My husband is a big stocky 55 year old man, so my assumption is that osteopenia to this degree is not normal.
Thanks!
Donna
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Zometa and smoldering multiple myeloma
Hi Donna,
First, I am lucky in that I'm not suffering from any bone issues as a smoldering multiple myeloma patient, so I'm not speaking from personal experience here.
However, MGUS and smoldering multiple myeloma patients can definitely develop osteopenia and osteoporosis as a result of having these maladies. I'm including a link to a Beacon article on the subject that talks about some fairly recent International Myeloma Working Group (IMWG) guidelines on bisphosphonate use with smoldering multiple myeloma patients:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, June 26, 2013
(Especially note the comment on the Zometa dosing used for asymptomatic versus symptomatic multiple myeloma patients.)
Note that earlier IMWG guidelines did not call for the use of bisphosphonate treatment for smoldering multiple myeloma patients, so pay attention to the dates of articles when you research this subject.
My own myeloma specialist, Dr. Berenson, does feel that osteopenia or osteoporosis in MGUS patients may require treatment with bisphosphonates to strengthen the bones. He also tends to favor the use of bisphosphonates, but no other treatment, in smoldering multiple myeloma patients suffering from significant osteopenia or osteoporosis.
The thing that might be considered controversial about your doctor's approach would be his plan to use bisphosphonates indefinitely. But you will have lots of time to sort that out and get some second opinions since most recommendations for limiting the duration of Zometa treatment are on the order of two years. I'm also not clear just what the IMWG recommends regarding the duration of bisphosphonate treatment in smoldering multiple myeloma patients.
Hope this helps.
First, I am lucky in that I'm not suffering from any bone issues as a smoldering multiple myeloma patient, so I'm not speaking from personal experience here.
However, MGUS and smoldering multiple myeloma patients can definitely develop osteopenia and osteoporosis as a result of having these maladies. I'm including a link to a Beacon article on the subject that talks about some fairly recent International Myeloma Working Group (IMWG) guidelines on bisphosphonate use with smoldering multiple myeloma patients:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, June 26, 2013
(Especially note the comment on the Zometa dosing used for asymptomatic versus symptomatic multiple myeloma patients.)
Note that earlier IMWG guidelines did not call for the use of bisphosphonate treatment for smoldering multiple myeloma patients, so pay attention to the dates of articles when you research this subject.
My own myeloma specialist, Dr. Berenson, does feel that osteopenia or osteoporosis in MGUS patients may require treatment with bisphosphonates to strengthen the bones. He also tends to favor the use of bisphosphonates, but no other treatment, in smoldering multiple myeloma patients suffering from significant osteopenia or osteoporosis.
The thing that might be considered controversial about your doctor's approach would be his plan to use bisphosphonates indefinitely. But you will have lots of time to sort that out and get some second opinions since most recommendations for limiting the duration of Zometa treatment are on the order of two years. I'm also not clear just what the IMWG recommends regarding the duration of bisphosphonate treatment in smoldering multiple myeloma patients.
Hope this helps.
Last edited by Multibilly on Wed May 25, 2016 8:18 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Zometa and smoldering multiple myeloma
Hello Brandyjoco,
I am a smoldering patient that receives Zometa yearly for osteopenia because that is the recommended dose of Zometa for that disease. I am 52 and my dexa scans show a marked decrease in bone integrity yearly, which is atypical for "normal" degenerative disease, so it is likely the myeloma causing the worsening osteopenia but my myeloma is not treated with Zometa, instead the Zometa is used preventatively to minimize progressive bone disease.
I would only comment that monthly Zometa infusions would disqualify your husband for most smoldering multiple myeloma clinical trials because, at that rate, it is considered "treatment" and previous treatments are not allowed with clinical trial participation. The best new novel treatments are only available via clinical trial.
I don't know what "2 in the back vertebrae" refers to with osteopenia. This sounds more like suspect lesions to me? Not sure, but my test results for osteopenia via dexa scan and skeletal survey are non-specific.
Best
J
I am a smoldering patient that receives Zometa yearly for osteopenia because that is the recommended dose of Zometa for that disease. I am 52 and my dexa scans show a marked decrease in bone integrity yearly, which is atypical for "normal" degenerative disease, so it is likely the myeloma causing the worsening osteopenia but my myeloma is not treated with Zometa, instead the Zometa is used preventatively to minimize progressive bone disease.
I would only comment that monthly Zometa infusions would disqualify your husband for most smoldering multiple myeloma clinical trials because, at that rate, it is considered "treatment" and previous treatments are not allowed with clinical trial participation. The best new novel treatments are only available via clinical trial.
I don't know what "2 in the back vertebrae" refers to with osteopenia. This sounds more like suspect lesions to me? Not sure, but my test results for osteopenia via dexa scan and skeletal survey are non-specific.
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Zometa and smoldering multiple myeloma
Hi, Brandyjoco.
I was diagnosed with osteopenia and osteoporosis in my late fifties. I learned that I had MGUS a few years later when it occurred to me to question why I had osteoporosis; it seemed so strange given my lifestyle.
In any event, after the "active" myeloma diagnosis came in, I started monthly infusions of Zometa. That continued for a little over a year. I then started getting an infusion every three months. I expect this schedule to continue perhaps for another year, but certainly not forever.
When I first started the Zometa infusions, I believe that I was borderline smoldering / active myeloma. My numbers were really not too bad, but I was probably considered "high risk" smoldering which justified the Zometa and other drug treatment.
I was diagnosed with osteopenia and osteoporosis in my late fifties. I learned that I had MGUS a few years later when it occurred to me to question why I had osteoporosis; it seemed so strange given my lifestyle.
In any event, after the "active" myeloma diagnosis came in, I started monthly infusions of Zometa. That continued for a little over a year. I then started getting an infusion every three months. I expect this schedule to continue perhaps for another year, but certainly not forever.
When I first started the Zometa infusions, I believe that I was borderline smoldering / active myeloma. My numbers were really not too bad, but I was probably considered "high risk" smoldering which justified the Zometa and other drug treatment.
Re: Zometa and smoldering multiple myeloma
Hi Brandyjoco,
I am smoldering myself and do the Zometa once a month. My doctor said you have to take a holiday from this treatment; I think he said after 2 years in my case. Because this treatment does lower your calcium, it is a good idea to keep track of that.
Additionally, not sure if your husband has had his first infusion yet, but I had fever and bone pain with the first infusion. I am happy to say, though, that I have had 0 side effects thereafter. If possible, ask them to administer over 45 minutes in lieu of textbook 15 minute guideline. Further, ask them for saline drip (hydration) at the same time. It helped so much!
Good luck.
I am smoldering myself and do the Zometa once a month. My doctor said you have to take a holiday from this treatment; I think he said after 2 years in my case. Because this treatment does lower your calcium, it is a good idea to keep track of that.
Additionally, not sure if your husband has had his first infusion yet, but I had fever and bone pain with the first infusion. I am happy to say, though, that I have had 0 side effects thereafter. If possible, ask them to administer over 45 minutes in lieu of textbook 15 minute guideline. Further, ask them for saline drip (hydration) at the same time. It helped so much!
Good luck.
Re: Zometa and smoldering multiple myeloma
Hi All,
Thanks for the information about Zometa. My husband is smoldering but will be starting monthly Zometa for osteopenia. The dexa scan shows -2.2 (severe osteopenia) as the T-score in the vertebrae areas. Most of the other T-scores are -1.5 or so (mild osteopenia?).
Our physician specifically looks at the T-score to make his decision about Zometa treatment. My understanding is a T-score of -2.5 or worse is osteoporosis. Being that he is only 55, osteopenia is probably the result of the smoldering myeloma or MGUS that he MAY have had for years. His CBC blood tests with low white blood cell counts look the same over the last 4 years (before we knew there was a problem).
That was hard for me to accept that my husband will be going once a month for Zometa infusions because it felt like we were now 'officially' entering into myeloma treatment. The feeling of 'official' was something I was hoping to delay. Both of us are working full time while raising 11 year old twins so sitting in 2 hours of L.A. traffic one way is tough. I love our specialist and trust him completely as his methods and treatment cocktails have helped to keep many of his patients alive for decades so we will definitely follow his protocol.
As far as monthly injections negating the possibility of being a candidate for a clinical trial, I believe many of this doctor's patients have participated in many clinical trials through the years. If need be, by stopping Zometa for 3 months, my understanding is that a person can be eligible for a clinical trial.
Thanks for the information about Zometa. My husband is smoldering but will be starting monthly Zometa for osteopenia. The dexa scan shows -2.2 (severe osteopenia) as the T-score in the vertebrae areas. Most of the other T-scores are -1.5 or so (mild osteopenia?).
Our physician specifically looks at the T-score to make his decision about Zometa treatment. My understanding is a T-score of -2.5 or worse is osteoporosis. Being that he is only 55, osteopenia is probably the result of the smoldering myeloma or MGUS that he MAY have had for years. His CBC blood tests with low white blood cell counts look the same over the last 4 years (before we knew there was a problem).
That was hard for me to accept that my husband will be going once a month for Zometa infusions because it felt like we were now 'officially' entering into myeloma treatment. The feeling of 'official' was something I was hoping to delay. Both of us are working full time while raising 11 year old twins so sitting in 2 hours of L.A. traffic one way is tough. I love our specialist and trust him completely as his methods and treatment cocktails have helped to keep many of his patients alive for decades so we will definitely follow his protocol.
As far as monthly injections negating the possibility of being a candidate for a clinical trial, I believe many of this doctor's patients have participated in many clinical trials through the years. If need be, by stopping Zometa for 3 months, my understanding is that a person can be eligible for a clinical trial.
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Zometa and smoldering multiple myeloma
Hi Brandyjoco,
I am 56, have smoldering myeloma, and entered a clinical trial with a new myeloma drug in January. I too have "osteopenia" in my lumbar spine, and I was allowed to start Zometa monthly, even though it has some anti-myeloma activity at the stem-cell level. My hematologist has recommended monthly Zometa for a year, followed by quarterly after that.
Compression fractures of the spine can be debilitating, both in terms of pain as well as neurologically (motor and sensory deficits). Well worth the long commutes now to prevent fractures later!
Bill
I am 56, have smoldering myeloma, and entered a clinical trial with a new myeloma drug in January. I too have "osteopenia" in my lumbar spine, and I was allowed to start Zometa monthly, even though it has some anti-myeloma activity at the stem-cell level. My hematologist has recommended monthly Zometa for a year, followed by quarterly after that.
Compression fractures of the spine can be debilitating, both in terms of pain as well as neurologically (motor and sensory deficits). Well worth the long commutes now to prevent fractures later!
Bill
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Bill F
Re: Zometa and smoldering multiple myeloma
I was diagnosed with smoldering multiple myeloma a year ago and am currently seeing a multiple myeloma specialist every sixty days following a blood draw. There's been no change – my numbers are staying the same for high-risk smoldering multiple myeloma.
I'm currently in good health; CAT scans and bone marrow biopsy both show no progression.
At this time I'm considering the benefits of Zometa and wondering if it is common for people with smoldering multiple myeloma to be treated with the drug.
Thanks! Dave
I'm currently in good health; CAT scans and bone marrow biopsy both show no progression.
At this time I'm considering the benefits of Zometa and wondering if it is common for people with smoldering multiple myeloma to be treated with the drug.
Thanks! Dave
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Dave4605 - Name: Dave
- Who do you know with myeloma?: self and a good friend
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 72
Re: Zometa and smoldering multiple myeloma
Hello Dave,
It is my experience that patients with smoldering multiple myeloma are often prescribed Zometa according to their dexa scan results. If a patient has osteoporosis, then they receive monthly infusions, and if they have osteopenia, regular infusions based on the severity of their low bone density.
I personally receive Zometa annually for osteopenia and this serves as a preventative measure for bone damage due to multiple myeloma (should I progress). I too am high risk for progression, so this seemed like a logical treatment option.
Good Luck!
J
It is my experience that patients with smoldering multiple myeloma are often prescribed Zometa according to their dexa scan results. If a patient has osteoporosis, then they receive monthly infusions, and if they have osteopenia, regular infusions based on the severity of their low bone density.
I personally receive Zometa annually for osteopenia and this serves as a preventative measure for bone damage due to multiple myeloma (should I progress). I too am high risk for progression, so this seemed like a logical treatment option.
Good Luck!
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Zometa and smoldering multiple myeloma
Hi,
I have IgG MGUS with osteoporosis. My multiple myeloma specialist put me on Zometa every six months for 4 mg infusion. I got my first one last Monday and got very mild flu symptoms, no fever and nothing major. Everyday for a few hours I felt very tired and feeling going down with cold. Which got better every day. Honestly, I am very concerned about the side effects in long run and wish I did not have to do it.
I have IgG MGUS with osteoporosis. My multiple myeloma specialist put me on Zometa every six months for 4 mg infusion. I got my first one last Monday and got very mild flu symptoms, no fever and nothing major. Everyday for a few hours I felt very tired and feeling going down with cold. Which got better every day. Honestly, I am very concerned about the side effects in long run and wish I did not have to do it.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
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