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Re: Persistent bone pain despite complete response
Is anyone else experiencing bone pain despite being in remission? That is, bone pain that is not related to active myeloma? If so, do you know the cause of it?
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Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
Re: Persistent bone pain despite complete response
Ya, my dad is, but Lyrica with Cymbalta has brought the pain down a few notches.
I'm not sure if anyone can point to the exact cause; I've heard some haematologists talk about microfractures in the bone etc.
I'm not sure if anyone can point to the exact cause; I've heard some haematologists talk about microfractures in the bone etc.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Persistent bone pain despite complete response
I use to think I still had bone pain, now that my cancer is less than 2%, but now I'm pretty sure is is muscle tension pulling on weak bones that makes it feel like bone pain. I know this because I feel pretty good the first hour standing up after a night's sleep and every time after I stretch using the techniques I describe in this post.
It helps to change positions and alternate frequently between sitting, leaning, standing, or walking. Otherwise my muscles tense up. Also, later in the day around 5 pm, I feel the worse after being up all day, so stretching, a hot shower (or hot tub) and good rest in a recliner watching TV always brings me back to normal again.
I also use physical aids to help my body deal with weak bones since I can only take calcium for a slow heal over time, not the bone building meds that would damage my kidneys. Since I had spine compression, my spine goes out of alignment often, so I try to align it, and use a stretchable back brace to help hold it into place. See this posting I made about physical aids to help reduce pain.
The only confirmed bone pain I now get is on the 2 days following my Ninlaro pill where the drug is working inside my bone marrow, but it goes away. The radiation on my lesions and the kyphoplasty on my spine helped.
It helps to change positions and alternate frequently between sitting, leaning, standing, or walking. Otherwise my muscles tense up. Also, later in the day around 5 pm, I feel the worse after being up all day, so stretching, a hot shower (or hot tub) and good rest in a recliner watching TV always brings me back to normal again.
I also use physical aids to help my body deal with weak bones since I can only take calcium for a slow heal over time, not the bone building meds that would damage my kidneys. Since I had spine compression, my spine goes out of alignment often, so I try to align it, and use a stretchable back brace to help hold it into place. See this posting I made about physical aids to help reduce pain.
The only confirmed bone pain I now get is on the 2 days following my Ninlaro pill where the drug is working inside my bone marrow, but it goes away. The radiation on my lesions and the kyphoplasty on my spine helped.
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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: Persistent bone pain despite complete response
Bob_D
I want to thank you again for your posts (this one and others, in other threads) on the causes / treatments for continued bone pain despite successful myeloma treatment.
First, it never occurred to me that my persistent bone pain may be a result of the residual bone damage caused by the myeloma when it was active, coupled by age-related degenerative changes, plus weakened muscles due to inactivity. That all makes obvious sense to me now, thanks to you, and I am trying a few of your suggestions.
The problem I have found is that most physical therapists have limited or nonexistent experience with myeloma patients, so the patient often has to educate himself/herself on how to balance safety against effective rehabilitation. And of course, your oncologist needs to be in the loop as well. That's really important.
In my case, my oncologist recommended walking, and working slowly to increase the amount of walking each day.
Thanks, Bob_D, for the great input!
I want to thank you again for your posts (this one and others, in other threads) on the causes / treatments for continued bone pain despite successful myeloma treatment.
First, it never occurred to me that my persistent bone pain may be a result of the residual bone damage caused by the myeloma when it was active, coupled by age-related degenerative changes, plus weakened muscles due to inactivity. That all makes obvious sense to me now, thanks to you, and I am trying a few of your suggestions.
The problem I have found is that most physical therapists have limited or nonexistent experience with myeloma patients, so the patient often has to educate himself/herself on how to balance safety against effective rehabilitation. And of course, your oncologist needs to be in the loop as well. That's really important.
In my case, my oncologist recommended walking, and working slowly to increase the amount of walking each day.
Thanks, Bob_D, for the great input!
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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: Persistent bone pain despite complete response
Have you considered trying a different bisphosphonate such as Aredia (pamidronate)?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Persistent bone pain despite complete response
Thank you for your suggestion, Multibilly,
My oncologist only approved denosumab (Prolia or XGEVA) as a bone building drug because my kidney function is only at 40%. After a month on Xgeva, I developed hives and because of this allergy and I was not allowed to take it anymore because it could cause my throat to swell up and I would not be able to breath.
Hello again MrPotatohead!
Thank you for the kind words and best of luck with your physical therapy to reduce pain.
Like being in a car accident, the myeloma gave us a new body that feels crappy and on the inside may look like a train wreck, so I guess we have to work at getting our bodies back the best we can and get on with our lives.
Bob_D
My oncologist only approved denosumab (Prolia or XGEVA) as a bone building drug because my kidney function is only at 40%. After a month on Xgeva, I developed hives and because of this allergy and I was not allowed to take it anymore because it could cause my throat to swell up and I would not be able to breath.
Hello again MrPotatohead!
Thank you for the kind words and best of luck with your physical therapy to reduce pain.
Like being in a car accident, the myeloma gave us a new body that feels crappy and on the inside may look like a train wreck, so I guess we have to work at getting our bodies back the best we can and get on with our lives.
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: Persistent bone pain despite complete response
We're also looking for relief or effective palliative care for this sort of problem, and would welcome suggestions.
My understanding is that the persistent bone pain despite response or remission has to do with the myeloma having altered the structure of the bone.
My husband now has intense pain throughout his spine, hips, ribs and legs due to active lytic lesions. I expect these to respond to his next treatment regimen, but in the meantime I was hoping for suggestions on how to manage the bone pain. Is there anything that works?
Thank you.
Laurie
My understanding is that the persistent bone pain despite response or remission has to do with the myeloma having altered the structure of the bone.
My husband now has intense pain throughout his spine, hips, ribs and legs due to active lytic lesions. I expect these to respond to his next treatment regimen, but in the meantime I was hoping for suggestions on how to manage the bone pain. Is there anything that works?
Thank you.
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Persistent bone pain despite complete response
What have you and your husband tried so far, Laurie, for the bone pain that he has, and what sort of success have you had?
Re: Persistent bone pain despite complete response
Hi Terry,
He has had bone pain since diagnosis (three years ago) that has never gone away. He is taking Oxycontin and oxycodone for break-though pain; gabapentin for neuropathy. They all help, but not enough, and his mobility is significantly impaired (alternating between a cane and walker). More recently, as his pain intensified – particularly in new areas ribs, thighs, spine – this prompted a bone marrow biopsy and PET-CT, which showed numerous new and active myeloma and lytic lesions.
He is unable to take more steroids due to steroid-related fatigue; Tylenol (acetaminophen / paracetamol) and ibuprofen may mask a fever, which the doctors have recommended he not take, given his history of sepsis and infection. Also, he has taken Cymbalta (duloxetine) and Lyrica (pregabalin) for neuropathy, neither of which helped with neuropathy, but gabapentin makes it manageable. We tried acupuncture as well at one point.
So, I am anticipating even if his myeloma is punched back, he will still have this pain, as that has been our experience even after a response. More opiates isn't ideal as he wants to be functional and is still trying to stay working.
I have heard of electric shock and other therapies and just wanted to see if anyone had any new ideas.
Thanks!
He has had bone pain since diagnosis (three years ago) that has never gone away. He is taking Oxycontin and oxycodone for break-though pain; gabapentin for neuropathy. They all help, but not enough, and his mobility is significantly impaired (alternating between a cane and walker). More recently, as his pain intensified – particularly in new areas ribs, thighs, spine – this prompted a bone marrow biopsy and PET-CT, which showed numerous new and active myeloma and lytic lesions.
He is unable to take more steroids due to steroid-related fatigue; Tylenol (acetaminophen / paracetamol) and ibuprofen may mask a fever, which the doctors have recommended he not take, given his history of sepsis and infection. Also, he has taken Cymbalta (duloxetine) and Lyrica (pregabalin) for neuropathy, neither of which helped with neuropathy, but gabapentin makes it manageable. We tried acupuncture as well at one point.
So, I am anticipating even if his myeloma is punched back, he will still have this pain, as that has been our experience even after a response. More opiates isn't ideal as he wants to be functional and is still trying to stay working.
I have heard of electric shock and other therapies and just wanted to see if anyone had any new ideas.
Thanks!
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Persistent bone pain despite complete response
Here are some pain reducing ideas to think about:
I find the best relief is to keep your muscles relaxed as much as you can and to keep your weight off your spine.
When standing, I hang from crutches that are set slightly taller then usual, so I can off load my body weight from the spine. When walking, I wear a tight lumbar brace, up high to hold my belly in to take the strain off my back, since I am overweight.
I try to get all my exercise done in the morning when I feel stronger and spend the afternoon relaxing my muscles. If I feel pain in the morning, I take tramadol.
By 12 noon, my muscles just get tense and tired no matter what I do, so I use more tramadol or drink just enough alcohol to relax my muscles. (I found that muscle relaxants like Flexeril [cyclobenzaprine] just make me too sleepy to be functional.)
Since the shape of my spine is not normal anymore, my back falls out of alignment more often, so I lie on my back on carpet or foam padding and do leg crossover to align my spine. That relieves a lot of pain caused by the spine misalignment.
I also sit more in the afternoon, at home or in a car, or I ride a bike in nice places (the wheels are smaller then usual so my feet can get to ground quick and easy. I also spend at least half an hour a day in a hot tub, so the hot water can relax deep into the muscle tissue.
For lesion pain, I try to keep pressure off all the spots that hurt (using pillows or memory foam padding) (in a car or in bed).
At night I always take a very hot shower or bath just before going quickly to bed.
/Bob_D
I find the best relief is to keep your muscles relaxed as much as you can and to keep your weight off your spine.
When standing, I hang from crutches that are set slightly taller then usual, so I can off load my body weight from the spine. When walking, I wear a tight lumbar brace, up high to hold my belly in to take the strain off my back, since I am overweight.
I try to get all my exercise done in the morning when I feel stronger and spend the afternoon relaxing my muscles. If I feel pain in the morning, I take tramadol.
By 12 noon, my muscles just get tense and tired no matter what I do, so I use more tramadol or drink just enough alcohol to relax my muscles. (I found that muscle relaxants like Flexeril [cyclobenzaprine] just make me too sleepy to be functional.)
Since the shape of my spine is not normal anymore, my back falls out of alignment more often, so I lie on my back on carpet or foam padding and do leg crossover to align my spine. That relieves a lot of pain caused by the spine misalignment.
I also sit more in the afternoon, at home or in a car, or I ride a bike in nice places (the wheels are smaller then usual so my feet can get to ground quick and easy. I also spend at least half an hour a day in a hot tub, so the hot water can relax deep into the muscle tissue.
For lesion pain, I try to keep pressure off all the spots that hurt (using pillows or memory foam padding) (in a car or in bed).
At night I always take a very hot shower or bath just before going quickly to bed.
/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
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