Hi everyone. Newly diagnosed multiple myeloma patient here. Found it in October 2011 when kidney started failing. Turns out it was multiple myeloma with Lambda light chain deposition disease. I had the kidney failure and anemia, but no other symptoms including clean bone scan.
Oncologist is recommending starting Zometa since kidney function has rebounded since on chemotherapy. While there is no detectable evidence of bone issues, he recommends Zometa for prevention of future bone loss.
Does anyone have experience taking Zometa with no evidence of bone issues? The concern is the potential impact to kidney, as well as other side effects of the drug.
Forums
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MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
Re: Zometa before bone issues
Hi Marvin,
My mother was diagnosed the same month as you and also exhibits no lesions in skeletal survey. She had no kindey impairment, and her oncologist has never even mentioned starting Zometa. I would be interested in hearing the "experts" opinions on this.
According to the following abstract, some multiple myeloma patients never develop severe bone loss or even sclerotic lesions:
Osteoblast stimulation in multiple myeloma lacking lytic bone lesions
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1990.tb07904.x/abstract
Interestingly, the abstract states, "90% of these patients were lambda multiple myeloma (70% of them were IgG lambda multiple myeloma)...". I noticed that your multiple myeloma is a Lambda FLC type. My mother's is as well. She is IgG lambda.
I am by no means qualified to give advice regarding multiple myeloma, but think I would get other opinions before starting any type of therapy that may be unnecessary.
Good luck and I'll be praying for you!
Lisa B
My mother was diagnosed the same month as you and also exhibits no lesions in skeletal survey. She had no kindey impairment, and her oncologist has never even mentioned starting Zometa. I would be interested in hearing the "experts" opinions on this.
According to the following abstract, some multiple myeloma patients never develop severe bone loss or even sclerotic lesions:
Osteoblast stimulation in multiple myeloma lacking lytic bone lesions
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1990.tb07904.x/abstract
Interestingly, the abstract states, "90% of these patients were lambda multiple myeloma (70% of them were IgG lambda multiple myeloma)...". I noticed that your multiple myeloma is a Lambda FLC type. My mother's is as well. She is IgG lambda.
I am by no means qualified to give advice regarding multiple myeloma, but think I would get other opinions before starting any type of therapy that may be unnecessary.
Good luck and I'll be praying for you!
Lisa B
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Zometa before bone issues
Neither a doctor or an expert of any sort, but I do know from the literature that Zometa is contra-indicated for those with kidney issues, so I would suggest being very careful in monitoring if you go ahead.
John Snippe
** I prefer not to think of myself as a cancer patient,
but rather as a cancer survivor trainee! **
** I prefer not to think of myself as a cancer patient,
but rather as a cancer survivor trainee! **
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Zometa before bone issues
Hi Marvin,
I was diagnosed as asymptomatic multiple myeloma April, 2011. I am IgG Lambda with no problems. Have been mild anemic for numerous years, have no kidney problems, no bone pain, no infections and feel totally normal. My BMB showed 9 plasma cells, and my M-Spike has fluctuated between 1.4 - 1.64 for the last year. My osseous bone xrays (April & Nov, 2011) have been normal, my bone density tests was normal but my MRI in October, 2011 showed some erosion on the inside of my thoraic discs. So, since I do not wish to have a fracture of the spine I agreed to monthly zometa treatments of 4 mg over 30 minutes. After 1 year the Hema/Onc stated that she would probably advise me to switch to quarterly infusions. Am assurming that I will have to have another MRI or they will determine if NTx (?) bone markers is applicable.
Had my first zometa infusion on December 2, 2011. Felt fine for a couple of days and then had major bone pain but mainly in my arthritic areas of the lumbar spine and right knee. My second treatment on January 3, 2012 was really quite easy as I was told to drink a lot of water the day before the treatment (which really cleans out your kidneys) and the day of the treatment and I do mean a LOT of water. Life is to short to even take the chance of a bone fracture which mainly happens in the spinal area according to reports that I have read. A fracture is also very hard on your body and affects your QOL and I have to many things that I want to do and see before this disease changes to symptomatic, if it ever does. Since the kidneys can only process so much calcium and the osteoclasts caused by the multiple myeloma hinders the rebuilding of your bones, the calcium has to go some where.
We wish you the best but do question your Onc for a thorough explanation of his recommendation, which should be based on facts that you agree with.
RitaB
I was diagnosed as asymptomatic multiple myeloma April, 2011. I am IgG Lambda with no problems. Have been mild anemic for numerous years, have no kidney problems, no bone pain, no infections and feel totally normal. My BMB showed 9 plasma cells, and my M-Spike has fluctuated between 1.4 - 1.64 for the last year. My osseous bone xrays (April & Nov, 2011) have been normal, my bone density tests was normal but my MRI in October, 2011 showed some erosion on the inside of my thoraic discs. So, since I do not wish to have a fracture of the spine I agreed to monthly zometa treatments of 4 mg over 30 minutes. After 1 year the Hema/Onc stated that she would probably advise me to switch to quarterly infusions. Am assurming that I will have to have another MRI or they will determine if NTx (?) bone markers is applicable.
Had my first zometa infusion on December 2, 2011. Felt fine for a couple of days and then had major bone pain but mainly in my arthritic areas of the lumbar spine and right knee. My second treatment on January 3, 2012 was really quite easy as I was told to drink a lot of water the day before the treatment (which really cleans out your kidneys) and the day of the treatment and I do mean a LOT of water. Life is to short to even take the chance of a bone fracture which mainly happens in the spinal area according to reports that I have read. A fracture is also very hard on your body and affects your QOL and I have to many things that I want to do and see before this disease changes to symptomatic, if it ever does. Since the kidneys can only process so much calcium and the osteoclasts caused by the multiple myeloma hinders the rebuilding of your bones, the calcium has to go some where.
We wish you the best but do question your Onc for a thorough explanation of his recommendation, which should be based on facts that you agree with.
RitaB
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RitaB
Re: Zometa before bone issues
Hi Marvin, There is an article from Dec. 2010 on this website which gives information on Zometa. The bisphonates, which also cover the drug Aredia, are not only 'bone building' drugs but also have some 'anti-cancer' effects. Maybe that is why your doctor recommended Zometa for you. (Have been taking Aredia since my dx, but also have had serious bone issues, so it was straight forward to be prescribed it). Hope that helps!
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Nancy S - Name: Nancy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Zometa before bone issues
Hi thought I would add my 2 cents worth , I came down with multiple myeloma in 2004 & was treated with increasing doses of Thalidomide & Dex for about 10 months towards the end of that treatment I was given Zometa for about 3 months (I lost almost 4" in height due to loss of bone in my spine ), as I was due to have some extensive work done on my teeth I was taken off the Zometa ( due to what was referred to as possible catostrophic failure of the jaw bone.) After the original 10 months of treatment I have recieved NO treatment what so ever , originally I was being tested and seen by an oncologist once a month ,then it was increased to every 2 months , then 3 & eventially every 4 months which is the cycle I am presently useing so far my tests are indicating that my multiple myeloma is still in check, One thing that did happen and I'll quote from a letter written by my First Oncologist - " Mr. RLS was extensively treated with Dex & Thalidomide & had a good responce to treatment. Unfortunately he developed lifelong complication from the Thalidomide -sensory neuropathy in his feet, reducing sensation in his feet on both sides and making it difficult for him to walk. He also developed lasting bullous changes in the skin of his hands and feet as a result of Dex and Thalidomide treatment."
More reciently I came down with & was (Cyro) operated on for Prostrate Cancer , I have no idea if there is any connection but so far looks like the operation fixed that problem . note : my Oncologist died of Multiple Myeloma after a bone marrow transplant about a year into my treatment , I had no idea he was so ill all the while treating myself and others right up till the end . I and all his other patients surly miss him , I and my wife recall him always smiling and cheerful. best regards RLS
More reciently I came down with & was (Cyro) operated on for Prostrate Cancer , I have no idea if there is any connection but so far looks like the operation fixed that problem . note : my Oncologist died of Multiple Myeloma after a bone marrow transplant about a year into my treatment , I had no idea he was so ill all the while treating myself and others right up till the end . I and all his other patients surly miss him , I and my wife recall him always smiling and cheerful. best regards RLS
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RLS
Re: Zometa before bone issues
Thanks everyone for the feedback. It's great to hear some opinions and Ideas on this.
A little more info on my diagnosis - it was IgG with Lambda Light Chains. That study you posted Lisa was very interesting. One thing is certain, there is no one flavor to this cancer and no one treatment that meets everyone's needs.
M-Spike is down from 4.7 to 1.0 after just 2 cycles. Light chains are now in normal range. Kidney function has improved with creatinine dropping from 3.8 to 1.4 over the course of the treatments. So far so good.
The zometa was put on the back burner due to the kidney issue and impact zometa can have on kidney function. Now that it looks like kidney health is restored, the doctor recommended a reduced dose every 28 days for up to 2 years. Again, no bone pain or bone issues and clean x-ray results.
I guess the big question is - if I stay off zometa for now, can lytic lesions and other bone issues be identified before the fractures start? What's the best way to detect that? Calcium levels? RIght now I have a pretty good quality of life and would like that to continue without impacting bones, but also don't want to unnecessarily harm my kidney. (Should mention I use kidney singularly since I've only had 1 since I was age 4....so I'm a little sensitive about keeping that remaining one going as long as possible).
A little more info on my diagnosis - it was IgG with Lambda Light Chains. That study you posted Lisa was very interesting. One thing is certain, there is no one flavor to this cancer and no one treatment that meets everyone's needs.
M-Spike is down from 4.7 to 1.0 after just 2 cycles. Light chains are now in normal range. Kidney function has improved with creatinine dropping from 3.8 to 1.4 over the course of the treatments. So far so good.
The zometa was put on the back burner due to the kidney issue and impact zometa can have on kidney function. Now that it looks like kidney health is restored, the doctor recommended a reduced dose every 28 days for up to 2 years. Again, no bone pain or bone issues and clean x-ray results.
I guess the big question is - if I stay off zometa for now, can lytic lesions and other bone issues be identified before the fractures start? What's the best way to detect that? Calcium levels? RIght now I have a pretty good quality of life and would like that to continue without impacting bones, but also don't want to unnecessarily harm my kidney. (Should mention I use kidney singularly since I've only had 1 since I was age 4....so I'm a little sensitive about keeping that remaining one going as long as possible).
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MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
Re: Zometa before bone issues
I was diagnosed Jan 2011, began treatment Mar 2011. Only symptom was anemia. No bone deterioration or lesions. Since day one, I've been getting Zometa the first week of each cycle. I don't particularly like taking it since it seems to make my queasiness and fatigue worse after treatment. Also don't like the risk for necrosis of the jaw. I talked to my doctor about discontuing the Zometa, but he strongly suggested continuing it for at least a year. He indicated there was evidence that it had anti-cancer effects when combined with other treatments. Nancy S. menitoned this in here post, and I have come across studies elsewhere that also confirm this. Consequently, I've stayed on the Zometa, though will bring up the possibility of stopping next month when I finsih my 12th cycle.
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Kevin J - Name: Kevin J
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Zometa before bone issues
Hi...yes, I should have mentioned that there is a suggested time limit to taking bisphonates, due to the risk of ONJ. One is not to have any sort of dental surgery while taking it, and I have never flossed my teeth so often in my life! My doc is also phasing me out of it by the end of the year, and my doses are just once every three months for the last couple of years. It is just that, having had fractures, and being diagnosed with osteopoenia, while yet never having elevated calcium levels detected in blood tests, one is left quite nervous about further bone damage. Myeloma tends to 'fly under the radar', or at least it did in my case!!
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Nancy S - Name: Nancy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Zometa before bone issues
If being actively treated, the most recent NCCN guidelines recommend use of bisphosphonates; zometa has demonstrated a survival benefit. If you are receiving steroids then bone loss and osteopenia will occur. With skeletal surveys ( regular xrays ) there has to be 30 % bone loss for osteopenia to be evident. Your renal situation might warrant altering the dose, frequency and speed of the infusion though .
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bond007
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