Hi All,
I have been wondering about bone pain in multiple myeloma and when this should be a concern.
My mum (69) was diagnosed in June 2016 and has been having Velcade, dexamethasone, and oral cyclophosphamide treatment since July. She is only having it once per week rather than twice (with a week off after every 4 weeks), as she got some early neuropathy with the twice weekly regimen.
She has responded well, and the IgA paraprotein has come down from 19 g/l (1.9 g/dl) to approx 2 g/l (0.2 g/dl). The last 2 months blood test results are the same, so the doctor thinks she may have come to a plateau, but he still recommends she continues with the weekly treatment for a few more months. He thinks it is risky to stop, as it may lead to the numbers going back up, but he can't say whether it's likely she will see a further reduction. She is not eligible for a stem cell transplant due to age.
She is now complaining of lower back pain, more on one side. The doctor doesn't think the pain is a cause of concern as the CT scan only showed small lesions in her spine and wouldn't explain the pain. Isn't it strange to be getting onset of low back bone pain if treatment is working? Should this be a concern and is there anything else we should be thinking about?
Many thanks.
Grace
Forums
Re: New bone pain during treatment - is it a concern?
Just because her serum numbers are improving, that doesn't necessarily mean that ongoing bone damage and/or future bone damage may not occur (this may happen even in patients in strict complete remission). I might therefore suggest discussing the use of a bisphosphonate such as Zometa to help improve the quality of her bones and to reduce her bone pain. Note that there are some risks associated with the use of Zometa that are well-covered in this forum.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New bone pain during treatment - is it a concern?
Hi GMM,
My father is on his 3rd cycle of CyBorD (cyclophosphamide, Velcade, and dexamethasone – what your mom is taking) on a weekly schedule, and he also has that lower back pain.
My father's pain is on his lower left, but from what he explains, it's not exactly bone pain. His doctor has not been too concerned about it.
My father is on his 3rd cycle of CyBorD (cyclophosphamide, Velcade, and dexamethasone – what your mom is taking) on a weekly schedule, and he also has that lower back pain.
My father's pain is on his lower left, but from what he explains, it's not exactly bone pain. His doctor has not been too concerned about it.
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nowwhat - Who do you know with myeloma?: dad
- When were you/they diagnosed?: 2016
- Age at diagnosis: 64
Re: New bone pain during treatment - is it a concern?
Thank you Multibilly for your reply. She is actually having Zometa once every cycle. I will have a read about the risks of this treatment on this forum, as I don't know what they are.
Hi Nowwhat. What you describe is very similar and in the same location as my mother's low back pain. It may not even be bone but more muscular? It may be somehow related to the drugs? Given my mum's bone scans also don't show anything too alarming, hopefully this is just a passing side effect.
I guess we are really just unsure what we can expect next and how long this treatment should be continued before it does more harm than good. This is probably something for a separate post.
The doctor said only a very small proportion of people get to a point where the paraprotein can no longer be detected. All he could say about prognosis is that delay of further onset of disease is greater when someone has a complete rather than partial response to this treatment. Not sure where that leaves us. We are just hoping a few more months of this will show some further response.
All the best to you both and thanks for your responses.
GMM
Hi Nowwhat. What you describe is very similar and in the same location as my mother's low back pain. It may not even be bone but more muscular? It may be somehow related to the drugs? Given my mum's bone scans also don't show anything too alarming, hopefully this is just a passing side effect.
I guess we are really just unsure what we can expect next and how long this treatment should be continued before it does more harm than good. This is probably something for a separate post.
The doctor said only a very small proportion of people get to a point where the paraprotein can no longer be detected. All he could say about prognosis is that delay of further onset of disease is greater when someone has a complete rather than partial response to this treatment. Not sure where that leaves us. We are just hoping a few more months of this will show some further response.
All the best to you both and thanks for your responses.
GMM
Re: New bone pain during treatment - is it a concern?
Hi GMM
I was constantly suffering from low back pain too. Sometimes the pain would actually shift from one side to the other. I had an MRI of the spine and an x-ray of the hip which didn't show anything. So I went to a physical therapist who gave me some lower back exercises to do, which have helped tremendously. He also pointed out a few movements I was doing which actually made the pain worse.
Not sure if this would help your mom, but it sure helped me.
Rhonda
I was constantly suffering from low back pain too. Sometimes the pain would actually shift from one side to the other. I had an MRI of the spine and an x-ray of the hip which didn't show anything. So I went to a physical therapist who gave me some lower back exercises to do, which have helped tremendously. He also pointed out a few movements I was doing which actually made the pain worse.
Not sure if this would help your mom, but it sure helped me.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: New bone pain during treatment - is it a concern?
Sorry one more thought, I also always used a heating paid to soothe the pain. My therapist suggested using ice (which isn't as soothing) but it definitely helps the pain diminish faster.
Best of luck
Rhonda
Best of luck
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: New bone pain during treatment - is it a concern?
GMM,
I'd like to express a couple opinions. First, just because lesions are small, I wouldn't be comfortable saying they can't be the source of pain. If pressure is on those lesions, I'd expect discomfort. Lesions identified via PET/CT are generally active lesions.
More importantly, I believe standard of care is considering a patient's general health over an arbitrary age as to whether or not an autologous stem cell transplant is considered or appropriate. Of course, this could be influenced by insurance or the country you live in.
I'd like to express a couple opinions. First, just because lesions are small, I wouldn't be comfortable saying they can't be the source of pain. If pressure is on those lesions, I'd expect discomfort. Lesions identified via PET/CT are generally active lesions.
More importantly, I believe standard of care is considering a patient's general health over an arbitrary age as to whether or not an autologous stem cell transplant is considered or appropriate. Of course, this could be influenced by insurance or the country you live in.
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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: New bone pain during treatment - is it a concern?
Hi GMM,
It's not clear from your post whether the CT scan also includes her hip / sacroiliac region. My husband complained of bone pain which was initially attributed to his compression fractures of several vertebra, but the CT scans that were initially done ended above his hip area.
When I asked for CT of his hip, it showed lesions in the sacroiliac joint region that were the source of his pain. He had radiation treatment as a result.
Unfortunately, the bone pain has never gone away, he is on pain meds and receives monthly Zometa.
It's not clear from your post whether the CT scan also includes her hip / sacroiliac region. My husband complained of bone pain which was initially attributed to his compression fractures of several vertebra, but the CT scans that were initially done ended above his hip area.
When I asked for CT of his hip, it showed lesions in the sacroiliac joint region that were the source of his pain. He had radiation treatment as a result.
Unfortunately, the bone pain has never gone away, he is on pain meds and receives monthly Zometa.
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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: New bone pain during treatment - is it a concern?
I have been wondering about this as well. When I started treatment, I only had pain in a lesion on T3. That is still there, but I think it's gotten less intense. In the last couple of months, I have noticed more and more NEW pain that seems to move around to different spots in my ribs, sternum, and upper back. It's a fairly low level, more psychologically upsetting than anything.
I am in my eighth cycle of treatment and my M-spike has gone from about 6.3 g/dL (63 g/l) to about 1.5 g/dL (15 g/l). I ignored the pain at first, assuming that if my numbers were going down it must be okay. As it continues, though, I am not so sure. I plan to ask the doctor when I see him in two weeks.
I'm wondering if perhaps Zometa is the cause of the problem. I get it monthly and have never noticed any side effects in the days immediately after, but the various bone pains come and go throughout the month.
-W
I am in my eighth cycle of treatment and my M-spike has gone from about 6.3 g/dL (63 g/l) to about 1.5 g/dL (15 g/l). I ignored the pain at first, assuming that if my numbers were going down it must be okay. As it continues, though, I am not so sure. I plan to ask the doctor when I see him in two weeks.
I'm wondering if perhaps Zometa is the cause of the problem. I get it monthly and have never noticed any side effects in the days immediately after, but the various bone pains come and go throughout the month.
-W
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willow75 - Who do you know with myeloma?: me
- When were you/they diagnosed?: 2017
- Age at diagnosis: 42
Re: New bone pain during treatment - is it a concern?
Hi GMM,
I remember having lower back pain too when on treatment. It seemed to be worse during the week off drugs, and I thought it was because the myeloma cells were more active. However, when I stopped treatment, the pain went away and my myeloma numbers did not go up. So I can only assume that the pain was due to the recovery of the healthy blood cell production on the week off drugs. The back pain was very similar later when my stem cells were collected for transplant (when you produce tons of blood cells in one go).
I remember having lower back pain too when on treatment. It seemed to be worse during the week off drugs, and I thought it was because the myeloma cells were more active. However, when I stopped treatment, the pain went away and my myeloma numbers did not go up. So I can only assume that the pain was due to the recovery of the healthy blood cell production on the week off drugs. The back pain was very similar later when my stem cells were collected for transplant (when you produce tons of blood cells in one go).
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