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Re: Persistent bone pain despite complete response
It looks like the Cymbalta (duloxetine) is starting to temper my dad's bone pain. One thing which my dad really scratches his head about is why there continues to be bone pain despite the cyclophosphamide, Velcade, and dexamethasone (CyBorD) having knocked down his kappa and lambda numbers down to normal levels.
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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
Hi Little Monkey,
Your dad's question is my question too.
My understanding is that Cymbalta is an antidepressant. I am very glad that it is showing results for your dad and hope that continues.
Can you tell me how he came to try it for his bone pain?
Your dad's question is my question too.
My understanding is that Cymbalta is an antidepressant. I am very glad that it is showing results for your dad and hope that continues.
Can you tell me how he came to try it for his bone pain?
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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
Cymbalta was a recommendation from the pain doctor he sees at the hospital. Gabapentin (Neurontin) wasn't doing much for him, so the pain management doctor said to give this Cymbalta a try.
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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 posted a few tips on bone pain management that might help you at
https://myelomabeacon.org/forum/post43247.html#p43247
https://myelomabeacon.org/forum/post43247.html#p43247
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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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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
Hi Mr Potatohead,
I was diagnosed 3 years ago and had an auto transplant 2 years ago.
Previously to being diagnosed, I broke my spine and had rods and screws put in my back (they didn't pick up on my illness then, even though it was only 3 months later I found out I had myeloma).
I cannot have any surgery at all to help my back, and am in extreme pain my whole waking life! I sleep really well, only because I take strong sleeping tablets, and I must say if I am lying down I only have very mild pain.
Over time I have tried almost everything and still get no relief, I just wish there was something. Morphine, Neurontin, Oxy, Endone, Targin, steroid injection, electric stimulation, and more. I even asked for a brace, which they refused, saying it would make my muscles too weak.
I exercise twice weekly at least yoga and cardio.
To make it worse, I had another fall a few years back which has left me with a large bump of bone (at bra strap height). Sorry don't know the medical term. And now I can't even sit back against a chair; have to sit side saddle!
Please, if anyone has heard of any new treatments or medications, would love if you could share.
I was diagnosed 3 years ago and had an auto transplant 2 years ago.
Previously to being diagnosed, I broke my spine and had rods and screws put in my back (they didn't pick up on my illness then, even though it was only 3 months later I found out I had myeloma).
I cannot have any surgery at all to help my back, and am in extreme pain my whole waking life! I sleep really well, only because I take strong sleeping tablets, and I must say if I am lying down I only have very mild pain.
Over time I have tried almost everything and still get no relief, I just wish there was something. Morphine, Neurontin, Oxy, Endone, Targin, steroid injection, electric stimulation, and more. I even asked for a brace, which they refused, saying it would make my muscles too weak.
I exercise twice weekly at least yoga and cardio.
To make it worse, I had another fall a few years back which has left me with a large bump of bone (at bra strap height). Sorry don't know the medical term. And now I can't even sit back against a chair; have to sit side saddle!
Please, if anyone has heard of any new treatments or medications, would love if you could share.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Persistent bone pain despite complete response
Bob_D
Those are great tips. Thanks for posting them.
I do get some relief from soaking in a hot tub. Also, applying something like Icy-Hot to my lower back helps a little bit, just by generating a competing sensation (heat) that distracts you a little bit from the pain.
Hi Tori,
I am so sorry to hear about your pain. Have you consulted more than one doctor about treatment? Specifically, have you talked to a pain specialist -- an MD certified in pain management?
I have just started seeing one, and he has so far tried an epidural injection of steroids. It worked for two days, and then the pain came roaring back, worse than ever. But he told me he has other options he can try.
I wish you all the best in getting control of the pain. For me, it is by far the worst thing about having myeloma.
Those are great tips. Thanks for posting them.
I do get some relief from soaking in a hot tub. Also, applying something like Icy-Hot to my lower back helps a little bit, just by generating a competing sensation (heat) that distracts you a little bit from the pain.
Hi Tori,
I am so sorry to hear about your pain. Have you consulted more than one doctor about treatment? Specifically, have you talked to a pain specialist -- an MD certified in pain management?
I have just started seeing one, and he has so far tried an epidural injection of steroids. It worked for two days, and then the pain came roaring back, worse than ever. But he told me he has other options he can try.
I wish you all the best in getting control of the pain. For me, it is by far the worst thing about having myeloma.
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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
I am in the same boat as all of you. I am going for a nerve block on Tuesday to see if it will curb the pain somewhat. This pain interferes with everything in a person's life. I cannot take any medications except for the Fentanyl patch I wear. And I can't have a very high dose because it creates adverse effects to my nervous system. It is very difficult. I will try some of everyone's suggestions.
Thank you for reading my post.
Thank you for reading my post.
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: Persistent bone pain despite complete response
Hi Mr Potatohead,
Thank you for your advice.
Yes I have been to several pain specialists and orthopedic surgeons for their opinion. Like you, I had the steroid epidural with no success -- maybe a bit of relief for a few days.
Unfortunately, because of the surgery I had for my spine before being diagnosed, they cannot operate again. Although one surgeon said there was an option of going in through the front of my body, opening up my chest and taking out my organs and then spine surgery! I didn't wait to ask what the procedure was called, just agreed with him that maybe that was a bit too severe of an option.
I think sometimes with all the advancement in medicine that surely they could find something to ease our pain.
Hopefully we can all stay in touch on this forum and offer any suggestions that have been of help.
Thank you for your advice.
Yes I have been to several pain specialists and orthopedic surgeons for their opinion. Like you, I had the steroid epidural with no success -- maybe a bit of relief for a few days.
Unfortunately, because of the surgery I had for my spine before being diagnosed, they cannot operate again. Although one surgeon said there was an option of going in through the front of my body, opening up my chest and taking out my organs and then spine surgery! I didn't wait to ask what the procedure was called, just agreed with him that maybe that was a bit too severe of an option.
I think sometimes with all the advancement in medicine that surely they could find something to ease our pain.
Hopefully we can all stay in touch on this forum and offer any suggestions that have been of help.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Persistent bone pain despite complete response
Hi Aurora T
Good luck with the nerve block! I do hope it brings you relief. I have read that it does help many people,
Please let us know how it works out for you.
Good luck with the nerve block! I do hope it brings you relief. I have read that it does help many people,
Please let us know how it works out for you.
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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
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