I had a consult with an orthopedic surgeon yesterday concerning my persistent bone pain. I told him I had had two kyphoplasties. His response rather shocked me. He said the heavy cement used in a kyphoplasty might cause the weakened myeloma-affected bone to fracture, and that kyphoplasty is therefore a risky procedure for addressing vertebral fractures in myeloma.
I have never heard this. Has anyone else? Thanks.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Kyphoplasty contraindicated for multiple myeloma?
Hello again Mr Potatohead !
My doctor gave me a sample of some dry kyphoplasty cement that he shaped into the size of dice and the stuff is as light as a feather. See if you can get a sample of what they used on your back.
Does your pain go away after a night's sleep, or do you feel pain sometimes during the night, perhaps in localized spots like rib, spine, hips?
It’s most likely muscle pain if the pain goes away at night and only returns when you start standing up in the morning. I call this compression pain, caused by straining muscles trying to support your weight on a weakened skeleton (soft bones with holes / lesions) or muscles pulling on soft bones which makes it feel like bone pain. Your back is supported by an entire system of muscles from your neck to your buttock. Walking in the morning when you feel strongest, strengthens this system of muscles. Back stretches while lying on the floor and using a small pillow-shaped electrically heated massager that you can move up and down your back from your neck to your buttock while sitting, will relax these muscles. This pain can go away if you relax the muscles several times a day up to the point until your muscles truly get tired. At this point, I found that reducing/removing as much weight off your bones is the only thing that seems to help.
As far as bone pain, I’m sure you know that bone building drugs and myeloma treatments can cause some bone pain, but what is more disturbing is the bone pain coming from active myeloma around the lesions, even if you are remission. It won’t show up in a blood test, since I suspect the myeloma is not widespread into the blood stream, but it hurts, and this pain seems to come and go.
I’m 61 years old, was diagnosed at stage 3 with lots of bone and kidney damage and have been fighting multiple myeloma for almost 2 years. Ninlaro is keeping my plasma cells down to less then 2% in my blood. I had some radiation on a few lesions in 2016 that helped for awhile, but when I accidentally missed 2 weeks of 2.3 mg of Ninlaro maintenance in January 2017, my bone pain level shot up in areas of my body that had lesions (ribs, spine and hip). I increased my maintenance dose of Ninlaro to 3 mg combined with 4 mg dexamethasone and this lesion pain is almost gone now.
So, my ongoing struggle with pain is how the keep my muscles strong with weight bearing activity, like walking, while still trying to reduce the weight on my weak bones. The formula that is currently working for me is morning exercise combined with afternoon rest (sitting, standing still with crutches or using zero-gravity techniques). Since I lost 6 inches in height from cervical, thoracic, and lumbar compression fractures, (in spite of kyphoplasty on 3 of my lumbar vertebrae), I now have kyphosis. So I stand or walk occasionally with ambulatory traction to prop up my body and transfer upper body weight to my legs, but not to decompress my spine. This reduces the weight on my bones and is especially useful if I need the use my hands or arms to move things or lift things.
Bob D
My doctor gave me a sample of some dry kyphoplasty cement that he shaped into the size of dice and the stuff is as light as a feather. See if you can get a sample of what they used on your back.
Does your pain go away after a night's sleep, or do you feel pain sometimes during the night, perhaps in localized spots like rib, spine, hips?
It’s most likely muscle pain if the pain goes away at night and only returns when you start standing up in the morning. I call this compression pain, caused by straining muscles trying to support your weight on a weakened skeleton (soft bones with holes / lesions) or muscles pulling on soft bones which makes it feel like bone pain. Your back is supported by an entire system of muscles from your neck to your buttock. Walking in the morning when you feel strongest, strengthens this system of muscles. Back stretches while lying on the floor and using a small pillow-shaped electrically heated massager that you can move up and down your back from your neck to your buttock while sitting, will relax these muscles. This pain can go away if you relax the muscles several times a day up to the point until your muscles truly get tired. At this point, I found that reducing/removing as much weight off your bones is the only thing that seems to help.
As far as bone pain, I’m sure you know that bone building drugs and myeloma treatments can cause some bone pain, but what is more disturbing is the bone pain coming from active myeloma around the lesions, even if you are remission. It won’t show up in a blood test, since I suspect the myeloma is not widespread into the blood stream, but it hurts, and this pain seems to come and go.
I’m 61 years old, was diagnosed at stage 3 with lots of bone and kidney damage and have been fighting multiple myeloma for almost 2 years. Ninlaro is keeping my plasma cells down to less then 2% in my blood. I had some radiation on a few lesions in 2016 that helped for awhile, but when I accidentally missed 2 weeks of 2.3 mg of Ninlaro maintenance in January 2017, my bone pain level shot up in areas of my body that had lesions (ribs, spine and hip). I increased my maintenance dose of Ninlaro to 3 mg combined with 4 mg dexamethasone and this lesion pain is almost gone now.
So, my ongoing struggle with pain is how the keep my muscles strong with weight bearing activity, like walking, while still trying to reduce the weight on my weak bones. The formula that is currently working for me is morning exercise combined with afternoon rest (sitting, standing still with crutches or using zero-gravity techniques). Since I lost 6 inches in height from cervical, thoracic, and lumbar compression fractures, (in spite of kyphoplasty on 3 of my lumbar vertebrae), I now have kyphosis. So I stand or walk occasionally with ambulatory traction to prop up my body and transfer upper body weight to my legs, but not to decompress my spine. This reduces the weight on my bones and is especially useful if I need the use my hands or arms to move things or lift things.
Bob D
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Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: Kyphoplasty contraindicated for multiple myeloma?
Per one of the summaries of the CAFE study (link below):
"Adverse events were similar between the kyphoplasty and control groups during the first month. The most common side effects were back pain and symptomatic vertebral fractures. The kyphoplasty group had a low incidence of new fractures at 12 months, which suggests that the intervention does not increase the risk of new fractures."
Reference:
Berenson, J, et al, "Balloon kyphoplasty versus non-surgical fracture management for treatment of painful vertebral body compression fractures in patients with cancer: a multicentre, randomised controlled trial," Lancet Oncology, March 2011 (abstract)
Here is a link to a presentation with the data that supported the above study.
"Adverse events were similar between the kyphoplasty and control groups during the first month. The most common side effects were back pain and symptomatic vertebral fractures. The kyphoplasty group had a low incidence of new fractures at 12 months, which suggests that the intervention does not increase the risk of new fractures."
Reference:
Berenson, J, et al, "Balloon kyphoplasty versus non-surgical fracture management for treatment of painful vertebral body compression fractures in patients with cancer: a multicentre, randomised controlled trial," Lancet Oncology, March 2011 (abstract)
Here is a link to a presentation with the data that supported the above study.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Kyphoplasty contraindicated for multiple myeloma?
Hello there, Bob_D!
Your exercise techniques seem to be working well for you. In my case, I keep it to about 1-2 miles of walking per day.
Pain is at its minimum when I start out, but the longer I walk, the worse it gets. I feel it mostly in the mid to lower back.
My pain generally goes away at night when I retire to bed.
Keep up the good work, Bob! I think it's important to have an exercise program, weak bone or not.
Multibilly,
Thanks for the excellent post. I should have known better! Kyphoplasty was one of the best things I did; it enabled me to bag my walker.
Your exercise techniques seem to be working well for you. In my case, I keep it to about 1-2 miles of walking per day.
Pain is at its minimum when I start out, but the longer I walk, the worse it gets. I feel it mostly in the mid to lower back.
My pain generally goes away at night when I retire to bed.
Keep up the good work, Bob! I think it's important to have an exercise program, weak bone or not.
Multibilly,
Thanks for the excellent post. I should have known better! Kyphoplasty was one of the best things I did; it enabled me to bag my walker.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Kyphoplasty contraindicated for multiple myeloma?
Hello,
I had tandem autologous stem cell transplant in October 2013.
Before that, I had kyphoplasty on two vertebrae, in August of 2013, and I have been fine ever since.
Before this, the work I did was office work (engineering). After this I now do heavy manufacturing work and regularly lift and move over 200-300 pounds and am fine. Tired, but fine.
My back is tired, but it has I believed help a lot.
My doctors said yes do it, but I had to decide before my back healed on it's own and not too close to my transplants. Also, my doctor did the kyphoplasty in a hospital in case there were any problems, and hopefully the hospital was cleaner than outpatient.
Good luck.
Joe.
I had tandem autologous stem cell transplant in October 2013.
Before that, I had kyphoplasty on two vertebrae, in August of 2013, and I have been fine ever since.
Before this, the work I did was office work (engineering). After this I now do heavy manufacturing work and regularly lift and move over 200-300 pounds and am fine. Tired, but fine.
My back is tired, but it has I believed help a lot.
My doctors said yes do it, but I had to decide before my back healed on it's own and not too close to my transplants. Also, my doctor did the kyphoplasty in a hospital in case there were any problems, and hopefully the hospital was cleaner than outpatient.
Good luck.
Joe.
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Joe85
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