When my husband was first diagnosed, back pain (only at night when sitting or lying down) led him to the doctor. However, before we even had a diagnosis, his back pain went away.
What could have been causing this back pain that went away before he even started treatment?
He recently started having back pain again. His back now hurts when he's active and feels better once he's relaxed. We are wondering if it is related to a possible relapse, or if it's just "regular" (not myeloma-related) back pain.
How can we tell? What type of tests will need to be run?
His initial skeletal x-ray did not show any lytic lesions.
Forums
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Back pain - how can you tell if it is myeloma-related?
I would recommend an MRI.
I initially was diagnosed with 3 compression fractures but after initial induction therapy and an ASCT, I told my myeloma specialist that my back still hurt.
He referred me to a neuroradiologist who confirmed 8 additional fractures. This was after I pushed for the thoracic/lumbar MRI.
Lesson learned: oncologist and myeloma specialist know cancer, but seek out a "bone doctor" for answers to specific pain concerns.
Kully
I initially was diagnosed with 3 compression fractures but after initial induction therapy and an ASCT, I told my myeloma specialist that my back still hurt.
He referred me to a neuroradiologist who confirmed 8 additional fractures. This was after I pushed for the thoracic/lumbar MRI.
Lesson learned: oncologist and myeloma specialist know cancer, but seek out a "bone doctor" for answers to specific pain concerns.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Back pain - how can you tell if it is myeloma-related?
I was just at the doctor and mentioned some hip/back pain. He ordered up an MRI. Any type of pain is a worry for myeloma survivors. That's the nature of the beast.
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Allison - Name: Allison
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2007
- Age at diagnosis: 52
Re: Back pain - how can you tell if it is myeloma-related?
I am very glad this question has been raised. After 18 years of living with this disease, I still don't know the answer.
I have several vague / severe pains in my back, hips, and legs which could be put down to myeloma or age. But I have had every scan or test known to man and nothing conclusive has been discovered except arthritis. But I often wonder what is lurking 'under' everything that is possibly too small to show up in current scanning methods (which are becoming ever more sophisticated).
About 4 years ago my haematologist said that we should stop looking for a cause for my various pains and just treat the pain. So, with the help of palliative care doctors, that is what we are doing. This, of course, means yet more tablets, which are only partly effective. But would my pain be any less if I discovered it was myeloma-related? I don't think so.
I should also say that it doesn't seem to matter whether I am relapsed or in remission -- the pains are still the same, so maybe it is arthritis after all.
I have several vague / severe pains in my back, hips, and legs which could be put down to myeloma or age. But I have had every scan or test known to man and nothing conclusive has been discovered except arthritis. But I often wonder what is lurking 'under' everything that is possibly too small to show up in current scanning methods (which are becoming ever more sophisticated).
About 4 years ago my haematologist said that we should stop looking for a cause for my various pains and just treat the pain. So, with the help of palliative care doctors, that is what we are doing. This, of course, means yet more tablets, which are only partly effective. But would my pain be any less if I discovered it was myeloma-related? I don't think so.
I should also say that it doesn't seem to matter whether I am relapsed or in remission -- the pains are still the same, so maybe it is arthritis after all.
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SusanMary - Name: Susan Brown
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 1996
- Age at diagnosis: 47
Re: Back pain - how can you tell if it is myeloma-related?
I'm glad this topic came up. My mom has multiple myeloma and suffers off and on from severe back pain. She also has spinal stenosis and arthritis. (Plus a laundry list of other things, including congestive heart failure, which brings me to my next question.)
She has a pacemaker/defibrillator and therefore cannot get an MRI. I wonder what they could do for her to see the extent of her back problem exactly?
We were once referred to a neurologist who did an x-ray and insisted on looking at the images the old fashion way (not on disc). He then told her that her spine was compressed, and that they couldn't do anything for her because of her cancer etc.
He was so rude about it and made her cry in his office. He was angry that he had originally sent her to get an MRI next door, and when we got there she informed the tech that she wasn't able to because of her pacemaker.
Hopefully we just had a bad doctor. Does anyone have any suggestions?
She has a pacemaker/defibrillator and therefore cannot get an MRI. I wonder what they could do for her to see the extent of her back problem exactly?
We were once referred to a neurologist who did an x-ray and insisted on looking at the images the old fashion way (not on disc). He then told her that her spine was compressed, and that they couldn't do anything for her because of her cancer etc.
He was so rude about it and made her cry in his office. He was angry that he had originally sent her to get an MRI next door, and when we got there she informed the tech that she wasn't able to because of her pacemaker.
Hopefully we just had a bad doctor. Does anyone have any suggestions?
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kellbabs
Re: Back pain - how can you tell if it is myeloma-related?
Kellbabs,
You could consider a PET/CT ... and a different doctor
You can do PET/CTs with a pacemaker in place. This might give you a better idea of the tradeoffs of Xray versus PET/CT.
Dr. Prashant Kapoor, "To PET or not to PET" (overview of myeloma-related imaging), Beacon forum posting Jul 24, 2014.
By the way, not all pacemakers are MRI-incompatible. The doc that put in the pacemaker can tell you what strength MRI it can handle ... or the instruction card that came with it should also tell you this info. So, that might be something you can explore as well.
You could consider a PET/CT ... and a different doctor
You can do PET/CTs with a pacemaker in place. This might give you a better idea of the tradeoffs of Xray versus PET/CT.
Dr. Prashant Kapoor, "To PET or not to PET" (overview of myeloma-related imaging), Beacon forum posting Jul 24, 2014.
By the way, not all pacemakers are MRI-incompatible. The doc that put in the pacemaker can tell you what strength MRI it can handle ... or the instruction card that came with it should also tell you this info. So, that might be something you can explore as well.
Last edited by Multibilly on Thu Sep 25, 2014 9:42 am, 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: Back pain - how can you tell if it is myeloma-related?
Thank you for raising this question!
Before I was diagnosed with multiple myeloma in 2013, I always had low back pain and pain in my hips. The doctor did an MRI, and it showed one old fracture in my lower back. My oncologist started with Zometa since November 2012, and it helps for the pain.
I had some weird pains for a while. When I lay down or sit, I can not stand up with severe pain. I gained a lot of weight the past 2 years. I started with water aerobics and the pain is less but laying down is no fun. I do not sleep at night, and the oncologist said it's part of the myeloma.
I want to see a bone doctor asap to do more investigation.
Before I was diagnosed with multiple myeloma in 2013, I always had low back pain and pain in my hips. The doctor did an MRI, and it showed one old fracture in my lower back. My oncologist started with Zometa since November 2012, and it helps for the pain.
I had some weird pains for a while. When I lay down or sit, I can not stand up with severe pain. I gained a lot of weight the past 2 years. I started with water aerobics and the pain is less but laying down is no fun. I do not sleep at night, and the oncologist said it's part of the myeloma.
I want to see a bone doctor asap to do more investigation.
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LindavUys
Re: Back pain - how can you tell if it is myeloma-related?
Back, or any new, pains are tough once you have myeloma bone disease. Generally, I ask that my patients let me know about new pains, paying close attention to the setting, the amount, and the duration of the pain. Important knowledge of disease control, biology, history (including extent of bone involvement) are all part of the equation. Because, as we can all attest to, with age we get more pains secondary to years of chronic use (degenerative disc / joint disease, arthritis, ...). So, not all pain = myeloma.
In the setting of excellent disease control, pains are more likely to be something else, but in the correct setting still need to be evaluated. Because, even in the best of circumstances, we have to be sure it is not new disease. Also, it is also not uncommon that weakness caused by initial disease can still fracture in spite of bisphosphonates or RANKL antibody therapy (Xgeva [denosumab]).
Certain back pains are critical to not wait on: New onset back pain after bending over or picking something up, particularly when the pain is significant and associated with neurological deficits (numbness, weakness in legs/arms, bowel or bladder incontinence). This is a situation that calls for urgent medical care (in other words: call your doctor right away).
Other back pains we can be a bit more conservative with: Chronic back pains, "typical" of previous pain, but a little worse than normal. In that situation, give it a couple of days, and if it does not improve as it normally does, then call your doctor. Be careful with the use of NSAIDs (they are bad for your kidneys).
It is tough.
BOTTOM LINE: If you have a question and are concerned, call your myeloma specialist. Let us help you figure it out. Plain films (x-rays) are often enough. CTs or MRIs may also be necessary.
In the setting of excellent disease control, pains are more likely to be something else, but in the correct setting still need to be evaluated. Because, even in the best of circumstances, we have to be sure it is not new disease. Also, it is also not uncommon that weakness caused by initial disease can still fracture in spite of bisphosphonates or RANKL antibody therapy (Xgeva [denosumab]).
Certain back pains are critical to not wait on: New onset back pain after bending over or picking something up, particularly when the pain is significant and associated with neurological deficits (numbness, weakness in legs/arms, bowel or bladder incontinence). This is a situation that calls for urgent medical care (in other words: call your doctor right away).
Other back pains we can be a bit more conservative with: Chronic back pains, "typical" of previous pain, but a little worse than normal. In that situation, give it a couple of days, and if it does not improve as it normally does, then call your doctor. Be careful with the use of NSAIDs (they are bad for your kidneys).
It is tough.
BOTTOM LINE: If you have a question and are concerned, call your myeloma specialist. Let us help you figure it out. Plain films (x-rays) are often enough. CTs or MRIs may also be necessary.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Back pain - how can you tell if it is myeloma-related?
Thank you, Dr. Shain. You and my oncologist are on the same wavelength. I'm not familiar with RANKL antibody therapy but will check that out.
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Allison - Name: Allison
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2007
- Age at diagnosis: 52
Re: Back pain - how can you tell if it is myeloma-related?
I hadn't heard of RANKL antibody therapy until just now:
FYI:
https://myelomabeacon.org/news/2009/01/14/novel-therapies-for-myeloma-bone-disease/
http://www.medscape.com/viewarticle/772431_5
FYI:
https://myelomabeacon.org/news/2009/01/14/novel-therapies-for-myeloma-bone-disease/
http://www.medscape.com/viewarticle/772431_5
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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