I'm on my fourth month of Velcade and Revlimid. The pain in lower back is getting worse, so doctor prescribed pain pills. I take one at night and one in the morning, typical stomach problems with the pills.
The lower back pain started about a month ago, was wondering if any other patients seem to get worse before seeing any improvements?
Thanks
Tom
Forums
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Back pain getting worse, not improving, during treatment
Hi Tom74
I am also four months into treatment that appears to be working, according to my decreasing kappa light chains.
But my back, rib, and arm pain are as bad as ever.
I am also four months into treatment that appears to be working, according to my decreasing kappa light chains.
But my back, rib, and arm pain are as bad as ever.
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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: Back pain getting worse, not improving, during treatment
Are either of you taking a bisphosphonate - Aredia or Zometa?
Those are bone hardeners and are supposed to help with lesions. They are typically given in conjunction with induction treatment.
Those are bone hardeners and are supposed to help with lesions. They are typically given in conjunction with induction treatment.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Back pain getting worse, not improving, during treatment
My husband had horrible back pain at time of diagnoses. We chalked it up to advanced myeloma. Turns out he had 2 compression fractures. We didn't realize this until after 3 months which is the best time for it to be treated with kyphoplasty.
I wonder if you should go to orthopedic specialist to have MRI / Xray to get opinion on state of your back.
During induction treatment he took zometa. He seemed to get around well. After SCT his back is hurting more. Wonder if it is because the Zometa is suspended?
I wonder if you should go to orthopedic specialist to have MRI / Xray to get opinion on state of your back.
During induction treatment he took zometa. He seemed to get around well. After SCT his back is hurting more. Wonder if it is because the Zometa is suspended?
Re: Back pain getting worse, not improving, during treatment
I have had two Zometo shots. Takes about 20 minutes and so far no side effects. Just have to stay ahead of the pain, downside is wife will not let me drive while on pain pills. Pain is worse at night and early morning.
Staying positive and looking forward to getting back to fishing.
Tom74
Staying positive and looking forward to getting back to fishing.
Tom74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Back pain getting worse, not improving, during treatment
Ron Harvot asked:
Hi Ron
Thanks very much for your post.
I have been on Zometa infusions since March, when I was diagnosed.
I can't tell if the Zometa reduced the pain, because I also had kyphoplasty a few months ago, which definitely helped.
My oncologist has told me that I will have to live with some level of pain even after remission, due to the damage that myeloma has already done to my spine, either directly through lytic lesions, or indirectly through fractures. Zometa apparently does not help with the healing of damage already done.
Are either of you taking a bisphosphonate - Aredia or Zometa?
Hi Ron
Thanks very much for your post.
I have been on Zometa infusions since March, when I was diagnosed.
I can't tell if the Zometa reduced the pain, because I also had kyphoplasty a few months ago, which definitely helped.
My oncologist has told me that I will have to live with some level of pain even after remission, due to the damage that myeloma has already done to my spine, either directly through lytic lesions, or indirectly through fractures. Zometa apparently does not help with the healing of damage already done.
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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: Back pain getting worse, not improving, during treatment
With any severe back pain with myeloma I would ask your doctor to make sure that you not having collapsing vertebrae and that appropriate imagery is done to ensure that. In my experience I have been having back pain, some of which is drug related. My oncologist ordered a whole body skeletal survey and it came back with little changes from my last one just showing old compression fracture in L1 from over 20 years ago. I went to a pain specialist and she ordered an MRI. The results of the MRI surprised me and I learned a lesson here. The MRI showed I had an old compression fracture at L5 that never showed up on any of the many x-rays I have had the last 4 years. It also showed that L2 was starting to show signs of collapsing as well. I was confused about how this L5 compression fracture came out of nowhere and was already deemed old. I asked for a radiologist consult appointment and we went over the MRI. Sure enough it was old, when it happened who knows but x-rays never saw it. In addition he said that in L4 the bone marrow was gone and had been replaced by a solid myeloma tumor or bone lesion. It was a distinctly different color on the image I could see. There was nothing in the original MRI report about any lesion or tumor in L4. He called my oncologist right there on the phone to talk with him about it. My oncologist referred me to a radiation therapy oncologist and sure enough I am now getting radiation treatment on L4. My lesion learned is sometimes you have to be your own advocate and push things along if they do not seem right and I no longer have much faith in x-ray for assessing bone damage from myeloma, at least in a critical area like the spine. And it is bothersome that a written report from a radiologist is that incomplete.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Back pain getting worse, not improving, during treatment
Hi Eric
I agree with you about the utility of skeletal surveys. My three previous surveys, the most recent having been done several weeks ago, showed no progression of bone damage. But an MRI done last week showed fresh fractures in the thoracic vertebrae.
I do think that myeloma patients need to press their care teams often on tests, test results, and collaboration across medical specialties - in this case, oncology and orthopedics.
In a previous post on another thread, someone had suggested seeking out an orthopedic oncologist. That seems to me an excellent suggestion, although I have not been able to locate one convenient to where I live.
I agree with you about the utility of skeletal surveys. My three previous surveys, the most recent having been done several weeks ago, showed no progression of bone damage. But an MRI done last week showed fresh fractures in the thoracic vertebrae.
I do think that myeloma patients need to press their care teams often on tests, test results, and collaboration across medical specialties - in this case, oncology and orthopedics.
In a previous post on another thread, someone had suggested seeking out an orthopedic oncologist. That seems to me an excellent suggestion, although I have not been able to locate one convenient to where I live.
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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: Back pain getting worse, not improving, during treatment
Doctor visit today. He took me off Velcade due to numbness in hands and feet, put me back on dex 25 mg once a week. Then he scheduled a CT scan of chest? Told me not to worry, just wants to check a few things out?
Needless to say, pretty nervous on the ride home. Back pain is as bad as ever and doctor said back pain is really common with myeloma.
Trying to stay positive,
Tom74
Needless to say, pretty nervous on the ride home. Back pain is as bad as ever and doctor said back pain is really common with myeloma.
Trying to stay positive,
Tom74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Back pain getting worse, not improving, during treatment
Hi Tom,
Strangely enough, I too had back pain throughout the treatments. In fact, the pain got worse with the treatment than what it was before. That was when the drugs were working.
When they stopped working and the M-spike did not drop anymore, some of the pain disappeared. I can only assume that when the drugs were killing the myeloma cells this caused some of the increased pain.
How is your treatment working?
Strangely enough, I too had back pain throughout the treatments. In fact, the pain got worse with the treatment than what it was before. That was when the drugs were working.
When they stopped working and the M-spike did not drop anymore, some of the pain disappeared. I can only assume that when the drugs were killing the myeloma cells this caused some of the increased pain.
How is your treatment working?
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finn
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