Hello All.
I understand that part of our challenge in dealing with multiple myeloma is the associated bone pain.
When I was diagnosed, it was mentioned that I had multiple compression fractures to seven of my vertabrae. I've been through a successful stem cell transplant and my blood work is looking quite fine, but my back and neck pain seems to be increasing? I've also had to double my pain medications in the last 3 weeks. I'm a workaholic and wondering is this it? Will I have to cash in my so called "working chips"?
I went for an MRI today. I guess that will tell if there's more damage, but is this what usually happens? Does bone pain often go up after initial treatment?
Thank you all in advance.
Danv
Forums
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DanV - Name: DanV
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 45
Re: Bone pain has increased - is that normal?
DanV
Have you had any operations to repair your collapsed vertebrae? I had vertebroplasty and kyphoplasty to my three compressed vertebrae along with regular Zometa infusions and my back pain improved vastly.
Successful treatment of the multiple myeloma also helped additional bone strength.
Have you had any operations to repair your collapsed vertebrae? I had vertebroplasty and kyphoplasty to my three compressed vertebrae along with regular Zometa infusions and my back pain improved vastly.
Successful treatment of the multiple myeloma also helped additional bone strength.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Bone pain has increased - is that normal?
Hi Danv:
You didn't mention if you were on any maintenance medication. I know, in my case, that I had severe bone and joint pain from maintenance Revlimid.
Kathleen
You didn't mention if you were on any maintenance medication. I know, in my case, that I had severe bone and joint pain from maintenance Revlimid.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Bone pain has increased - is that normal?
Craig and Kathleen,
Thank you both for your insight on the matter through your own experiences.
Craig - For some reason they seem to want to push vertebroplasty? Not sure if they're waiting to see if there's going to be further compression or what the reasoning might be. I am on pamidronate (Aredia) as it seems to be the product pushed here in Ontario, but I was told they're moving to Zometa soon. It will be the product pushed starting in June; perhaps that will help
Kathleen - So sorry, I'm a newbie and forgot to mention that I am on maintenance with 10 mg per day everyday (no days off) and nothing else accompanying this, meaning no dex or other typically associated medications. As noted above, I'm on pamidronate once a month and that's it!
I'm so pleased to have received some input. I'm not the type to discuss these sort of things with others around me, and I certainly don't want to worry the family.
Sincerely from the bottom of my heart, thank you
Thank you both for your insight on the matter through your own experiences.
Craig - For some reason they seem to want to push vertebroplasty? Not sure if they're waiting to see if there's going to be further compression or what the reasoning might be. I am on pamidronate (Aredia) as it seems to be the product pushed here in Ontario, but I was told they're moving to Zometa soon. It will be the product pushed starting in June; perhaps that will help
Kathleen - So sorry, I'm a newbie and forgot to mention that I am on maintenance with 10 mg per day everyday (no days off) and nothing else accompanying this, meaning no dex or other typically associated medications. As noted above, I'm on pamidronate once a month and that's it!
I'm so pleased to have received some input. I'm not the type to discuss these sort of things with others around me, and I certainly don't want to worry the family.
Sincerely from the bottom of my heart, thank you
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DanV - Name: DanV
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 45
Re: Bone pain has increased - is that normal?
Hello DanV,
If you have kidney damage that prevents you from taking bone building drugs, you are probably going to have some compression related pain from weak bones in your entire spine from your sacrum to the cervical vertebra, regardless of kyphoplasty, although it helps reduce pain. It’s best to do the procedure as soon as possible, before you lose too much height or the vertebra become too flattened, preventing the doctor from doing the procedure. Also, it’s unlikely they can do this procedure on your entire back, especially in the smaller vertebra in your upper back and neck.
I developed pain in my upper back (thoracic levels) and cervical part of my spine (neck) about 18 months after being diagnosed in March 2015, at Stage 3. The initial pain felt like a burning sensation which lasted only a month and now it just aches badly.
I don’t take pain killers, so I learned to reduce this pain in other ways. For instance, to absorb shock and vibration when I drive in a car, I use a memory foam pillow for my back, a memory foam collar for my neck and a soft coccyx cushion to sit on. The coccyx cushion also takes pressure off your spine where ever you sit. At home, I use a small pillow size massager with heat, to relax my neck and back muscles. I do neck rolls and roll on my back on a foam carpeted floor or mat as often as possible.
I noticed a lot more pain when I lowered my dose of dexamethasone. I take 4mg every other week, and for months, I have had sore aching muscles all over my body. I try to exercise the pain away, but it always comes back. Now after 2 years without a stem cell transplant, I am in complete remission and taking 3 mg Ninlaro as maintenance every other week. I suspect the pain I still have is from residual bone damage as well as weak bones and weak muscles still trying to heal.
You might want to check out this discussion here in the forum:
"Kyphoplasty contraindicated for multiple myeloma?" (started Feb 19, 2017)
/Bob
If you have kidney damage that prevents you from taking bone building drugs, you are probably going to have some compression related pain from weak bones in your entire spine from your sacrum to the cervical vertebra, regardless of kyphoplasty, although it helps reduce pain. It’s best to do the procedure as soon as possible, before you lose too much height or the vertebra become too flattened, preventing the doctor from doing the procedure. Also, it’s unlikely they can do this procedure on your entire back, especially in the smaller vertebra in your upper back and neck.
I developed pain in my upper back (thoracic levels) and cervical part of my spine (neck) about 18 months after being diagnosed in March 2015, at Stage 3. The initial pain felt like a burning sensation which lasted only a month and now it just aches badly.
I don’t take pain killers, so I learned to reduce this pain in other ways. For instance, to absorb shock and vibration when I drive in a car, I use a memory foam pillow for my back, a memory foam collar for my neck and a soft coccyx cushion to sit on. The coccyx cushion also takes pressure off your spine where ever you sit. At home, I use a small pillow size massager with heat, to relax my neck and back muscles. I do neck rolls and roll on my back on a foam carpeted floor or mat as often as possible.
I noticed a lot more pain when I lowered my dose of dexamethasone. I take 4mg every other week, and for months, I have had sore aching muscles all over my body. I try to exercise the pain away, but it always comes back. Now after 2 years without a stem cell transplant, I am in complete remission and taking 3 mg Ninlaro as maintenance every other week. I suspect the pain I still have is from residual bone damage as well as weak bones and weak muscles still trying to heal.
You might want to check out this discussion here in the forum:
"Kyphoplasty contraindicated for multiple myeloma?" (started Feb 19, 2017)
/Bob
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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: Bone pain has increased - is that normal?
DanV:
Maybe they can consider reducing your Revlimid to 5 mg. They tried that for me, and I did feel better. However, I was still so ill on the 5 mg of Revlimid that they took me off of it completely. I have been off of it now for 6 weeks, and I am feeling much better. Bone, and joint pain, almost completely gone (except for the compression fractures in my back).
I am also on Zometa 1 x month, but I don't seem to have any side effects from it.
I have never asked, nor has surgery for my back been recommended. Frankly the idea of back surgery scares me more than living with this cancer.
My numbers are still stable, and my next appointment is on the 20th. I am sure the doctor is going to want me to go on some type of maintenance. Not sure what that may be. Hopefully something I can better tolerate.
I also agree with Bob_D, I think being off of dex makes bone pain more pronounced, but I am not sure they want to use dex with the Revlimid as long as you're in remission. It's my understanding that as long as they are "maintaining" your cancer status, and not actively treating your cancer, there is no reason to add dex. I know that will be the first question I ask the doctor when I see him.
Kathleen
Maybe they can consider reducing your Revlimid to 5 mg. They tried that for me, and I did feel better. However, I was still so ill on the 5 mg of Revlimid that they took me off of it completely. I have been off of it now for 6 weeks, and I am feeling much better. Bone, and joint pain, almost completely gone (except for the compression fractures in my back).
I am also on Zometa 1 x month, but I don't seem to have any side effects from it.
I have never asked, nor has surgery for my back been recommended. Frankly the idea of back surgery scares me more than living with this cancer.
My numbers are still stable, and my next appointment is on the 20th. I am sure the doctor is going to want me to go on some type of maintenance. Not sure what that may be. Hopefully something I can better tolerate.
I also agree with Bob_D, I think being off of dex makes bone pain more pronounced, but I am not sure they want to use dex with the Revlimid as long as you're in remission. It's my understanding that as long as they are "maintaining" your cancer status, and not actively treating your cancer, there is no reason to add dex. I know that will be the first question I ask the doctor when I see him.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Bone pain has increased - is that normal?
I just got back from my oncology visit and I shrunk another half inch (1.3 cm) over the last 3 months. I was diagnosed two years ago and and had severe kidney damage at diagnosis. So I cannot take bone builders (and I am allergic to Xgeva / Prolia). So my spine continues to flatten.
My flattened vertebra (lumbar to cervical) is causing constant muscle strain from my neck to lower back as well as back misalignment pain.
Physical therapy does not help for very long, so I now reduce misalignment pain by rolling my back on the floor with my knees up towards my chin while using a neck massager at the same time when I feel pain coming on. I also hang from my shoulders using crutches while I roll my hips in a circle while in semi-sitting position, but feet on the floor.
I use a lower lumbar brace and sometime a full torso (flexible but tight) corset body brace to help hold my spin in alignment and to reduce muscle strain. The extra support gets me throught the day without using pain killers. I was recent prescribed a muscle relaxant called Flexeril (cyclobenzaprine), but it is like a sedative without the side effects of pain killers. I thought I would be over this after two years, but I am still learning how to deal with daily pain.
/Bob
My flattened vertebra (lumbar to cervical) is causing constant muscle strain from my neck to lower back as well as back misalignment pain.
Physical therapy does not help for very long, so I now reduce misalignment pain by rolling my back on the floor with my knees up towards my chin while using a neck massager at the same time when I feel pain coming on. I also hang from my shoulders using crutches while I roll my hips in a circle while in semi-sitting position, but feet on the floor.
I use a lower lumbar brace and sometime a full torso (flexible but tight) corset body brace to help hold my spin in alignment and to reduce muscle strain. The extra support gets me throught the day without using pain killers. I was recent prescribed a muscle relaxant called Flexeril (cyclobenzaprine), but it is like a sedative without the side effects of pain killers. I thought I would be over this after two years, but I am still learning how to deal with daily pain.
/Bob
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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: Bone pain has increased - is that normal?
I was having so much uncontrollable pain, even though all my cancer markers were looking good again by March 2018 (after 3 years of treatment), that my oncologist put me on a one month “treatment holiday” on the condition that I get a bone marrow biopsy so that he could see how much of my pain would subside and more importantly to get a correlation to the blood tests.
To my surprise, half the pain went way. That means that half of my bone pain was treatment-induced pain. Also, I began having dexamethasone withdrawal muscle pains only a week after stopping dex cold turkey, so I’m gradually reducing it over time to prevent achy muscles and muscle cramps, especially in legs and arms and sometime the hands. The muscle pain was so bad that I couldn’t sleep at night. I now take tramadol, which helps with all my muscle-related pains without the side effects, like drowsiness and incoherency. It also works well on the tight muscle tension squeezing pain that I get around the spine in the waist area (what I call “a vice grip” waist).
Also, since I lost 5 to 6 inches (12.5 - 15 cm) in height from spine compression fractures, my belly protrudes out like a pregnant women, and it strains my back muscles terribly. So I now suck in my gut and velcro on a tight stretchable lumbar brace up high above my waist to hold my belly in and to reduce the muscle pain I get when standing or walking for hours, especially past noon every day when my back and stomach muscles are starting to get tense and tired.
Sadly to say, I still have minor localized pain in areas that had / have bone lesions (per PET scans and MRI’s) since those areas are still weak. I can’t take any bone building drugs due to my kidney issues and I get hives using Xgeva (the risk is too high on not being able to breath). I also think I reached my quota for radiation treatments to some of the old lesions. So I grit and bare it the best I can, since most of the opiate painkillers make me sick or put me in a comatose state, with an unacceptable quality of life. Afternoon alcohol and medical marijuana help relax my muscles to the point I feel OK in the afternoon and into the evening, when the pain would be at it’s worse. If I need to stand more then a few hours, I stand using crutches that are slightly taller then usual to help support my spine. I also use memory foam lumbar pill and neck collar when driving in a car to absorb shock and vibration to the entire neck spine and buttock.
After my "treatment holiday" is over in May, I not sure what my treatment will be. I was on a maintenance level of Ninlaro (9 mg per month for 18 months), and recently went to full-on Velcade injections and Darzalex infusions in January 2018 since my light chain numbers began creeping up and I began to have noticeable more rib and spine bone pain from October to December 2017. But if I can get a few more months of treatment on Ninlaro, that would be great, since I felt my best while on the drug.
Thought I share this info,
Bob_D
To my surprise, half the pain went way. That means that half of my bone pain was treatment-induced pain. Also, I began having dexamethasone withdrawal muscle pains only a week after stopping dex cold turkey, so I’m gradually reducing it over time to prevent achy muscles and muscle cramps, especially in legs and arms and sometime the hands. The muscle pain was so bad that I couldn’t sleep at night. I now take tramadol, which helps with all my muscle-related pains without the side effects, like drowsiness and incoherency. It also works well on the tight muscle tension squeezing pain that I get around the spine in the waist area (what I call “a vice grip” waist).
Also, since I lost 5 to 6 inches (12.5 - 15 cm) in height from spine compression fractures, my belly protrudes out like a pregnant women, and it strains my back muscles terribly. So I now suck in my gut and velcro on a tight stretchable lumbar brace up high above my waist to hold my belly in and to reduce the muscle pain I get when standing or walking for hours, especially past noon every day when my back and stomach muscles are starting to get tense and tired.
Sadly to say, I still have minor localized pain in areas that had / have bone lesions (per PET scans and MRI’s) since those areas are still weak. I can’t take any bone building drugs due to my kidney issues and I get hives using Xgeva (the risk is too high on not being able to breath). I also think I reached my quota for radiation treatments to some of the old lesions. So I grit and bare it the best I can, since most of the opiate painkillers make me sick or put me in a comatose state, with an unacceptable quality of life. Afternoon alcohol and medical marijuana help relax my muscles to the point I feel OK in the afternoon and into the evening, when the pain would be at it’s worse. If I need to stand more then a few hours, I stand using crutches that are slightly taller then usual to help support my spine. I also use memory foam lumbar pill and neck collar when driving in a car to absorb shock and vibration to the entire neck spine and buttock.
After my "treatment holiday" is over in May, I not sure what my treatment will be. I was on a maintenance level of Ninlaro (9 mg per month for 18 months), and recently went to full-on Velcade injections and Darzalex infusions in January 2018 since my light chain numbers began creeping up and I began to have noticeable more rib and spine bone pain from October to December 2017. But if I can get a few more months of treatment on Ninlaro, that would be great, since I felt my best while on the drug.
Thought I share this info,
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: Bone pain has increased - is that normal?
Hello Bob,
I am sorry to hear of the pain you are having along with the myeloma treatments, and the damage to your system from the injuries too.
I wondered if you have tried muscle relaxants, such as Flexeril (cyclobenzaprine), for the muscle tightening and cramping. I used that when I had vertebral fractures and terrible spasms of pain. I am not sure what the side effects would be in terms of kidney damage though. It is a prescription drug, so you could ask your doctor about it.
Have you tried physiotherapy, such as gentle stretching or yoga, to help with the injuries?
It's good that medicinal marijuana is now available for some patients, but I am not sure that alcohol is a drug of choice!
Hoping that you can get a handle on all of this pain, and able to continue with your therapies. Good luck with everything.
I am sorry to hear of the pain you are having along with the myeloma treatments, and the damage to your system from the injuries too.
I wondered if you have tried muscle relaxants, such as Flexeril (cyclobenzaprine), for the muscle tightening and cramping. I used that when I had vertebral fractures and terrible spasms of pain. I am not sure what the side effects would be in terms of kidney damage though. It is a prescription drug, so you could ask your doctor about it.
Have you tried physiotherapy, such as gentle stretching or yoga, to help with the injuries?
It's good that medicinal marijuana is now available for some patients, but I am not sure that alcohol is a drug of choice!
Hoping that you can get a handle on all of this pain, and able to continue with your therapies. Good luck with everything.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Bone pain has increased - is that normal?
My wife has multiple sclerosis. Her neurologist prescribes baclofen for muscle tightness like you describe happening around your waist. It is very effective, but best taken at night.
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
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