Hello everyone,
Six months after an autologous stem cell transplant, I am in complete response. My metabolic numbers are all within their normal ranges, and my CBC numbers have improved, but red and white blood cell counts are still below normal. My guess is that this is due to the effects of Kyprolis (carfilzomib), which I am taking as maintenance. My serum free light chains and their ratio are within their normal ranges. (I have kappa light chain multiple myeloma).
My oncologist is very happy with the results, and of course I am grateful for them as well.
However, my major symptoms, extensive and intense bone pain and crushing fatigue, are entirely unimproved.
I have been through the gamut of pain medications, and none of them are really effective.
An orthopedic surgeon I recently consulted recommended an intrathecal pain pump, and I wonder if anyone on the Beacon Forum can give me an idea what to expect with such pumps. With this form of pain treatment, the pain medication is directly delivered to your spinal cord by a pump that is implanted in your abdomen.
Using Google, my research so far has been inconclusive about what I can expect with such an approach to the pain I've been experiencing. I have pain everywhere – back, ribs, arms, legs, etc. The transplant has made no difference at all.
Thank you!
Forums
8 posts
• Page 1 of 1
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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: Intrathecal pain pump - what to expect?
Hi Mr. PH,
It is distressing to hear that you are still experiencing so much pain even though your FLCs are under control. I'm seeing my specialist in Southern California next week for a routine checkup and I will ask him if any of his patients have utilized this device or not and what kind of experiences they had.
Out of curiosity, did you have lesions in all of the areas that you mentioned and have you had a recent PET/CT to see if there is still any myeloma activity in your bones (in spite of your great serum numbers)? Also, is the pain you are experiencing the same as before your started on Kyprolis? As I'm sure you know, bone and body and back pain are known common side effects of Kyprolis.
Lastly, note these earlier posts from Dawn:
https://myelomabeacon.org/forum/revlimid-pain-medication-delays-t2010.html#p10840
https://myelomabeacon.org/forum/do-lab-results-indicate-relapse-t3342.html#p18820
It is distressing to hear that you are still experiencing so much pain even though your FLCs are under control. I'm seeing my specialist in Southern California next week for a routine checkup and I will ask him if any of his patients have utilized this device or not and what kind of experiences they had.
Out of curiosity, did you have lesions in all of the areas that you mentioned and have you had a recent PET/CT to see if there is still any myeloma activity in your bones (in spite of your great serum numbers)? Also, is the pain you are experiencing the same as before your started on Kyprolis? As I'm sure you know, bone and body and back pain are known common side effects of Kyprolis.
Lastly, note these earlier posts from Dawn:
https://myelomabeacon.org/forum/revlimid-pain-medication-delays-t2010.html#p10840
https://myelomabeacon.org/forum/do-lab-results-indicate-relapse-t3342.html#p18820
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Intrathecal pain pump - what to expect?
Hello Mr. PH,
As with any treatment, one needs to consider the benefits and risks. An intrathecal pain pump will target the spine directly; it will not eliminate other pain the body may have. As with other pain medications, this will not eliminate the source of pain, but, it may help manage the pain better.
If spine pain is the primary area of pain, have you considered epidural steroid injections (ESI), ketamine infusions, or acupuncture as alternatives for pain management?
Prior to my spouse’s autologous stem cell transplant, a triple-lumen catheter was implanted in the chest. While in isolation during the stem cell transplant, my spouse developed an antibiotic resistant staph infection. Upon removal of the catheter and laboratory analysis, the source of infection was the tip of the catheter. Needless to say, this infection prolonged an otherwise uneventful transplant.
Since the transplant, my spouse continues to have abnormally low white blood cell counts, abnormally low lymphocyte counts, and fluctuating abnormally low neutrophil counts.
When the anesthesiologist discussed options for pain management, the intrathecal pain pump was presented. Being an implantable device, the pump leaves the body open for infection (similar to the catheter used during my spouse's transplant). Without any consideration, it was not an option, due to the continued low WBC, lymphocyte and neutrophil counts, as the possibility for infection exists.
My spouse continues to see a palliative care physician, for pain management, who is part of the cancer center. Initially the appointments were monthly (more than a year) to tweak the numerous pain medications.
Best,
ZZ
As with any treatment, one needs to consider the benefits and risks. An intrathecal pain pump will target the spine directly; it will not eliminate other pain the body may have. As with other pain medications, this will not eliminate the source of pain, but, it may help manage the pain better.
If spine pain is the primary area of pain, have you considered epidural steroid injections (ESI), ketamine infusions, or acupuncture as alternatives for pain management?
Prior to my spouse’s autologous stem cell transplant, a triple-lumen catheter was implanted in the chest. While in isolation during the stem cell transplant, my spouse developed an antibiotic resistant staph infection. Upon removal of the catheter and laboratory analysis, the source of infection was the tip of the catheter. Needless to say, this infection prolonged an otherwise uneventful transplant.
Since the transplant, my spouse continues to have abnormally low white blood cell counts, abnormally low lymphocyte counts, and fluctuating abnormally low neutrophil counts.
When the anesthesiologist discussed options for pain management, the intrathecal pain pump was presented. Being an implantable device, the pump leaves the body open for infection (similar to the catheter used during my spouse's transplant). Without any consideration, it was not an option, due to the continued low WBC, lymphocyte and neutrophil counts, as the possibility for infection exists.
My spouse continues to see a palliative care physician, for pain management, who is part of the cancer center. Initially the appointments were monthly (more than a year) to tweak the numerous pain medications.
Best,
ZZ
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: Intrathecal pain pump - what to expect?
Hi Multibilly,
Thanks very much for offering to ask your myeloma specialist about the pump, and thanks for those threads, which were very helpful. Some patients – perhaps,the majority – seem to find that the pump brings better pain control, but there is the risk of infection and other complications, And, for some, it seems to be no better than less invasive ways of taking pain medication.
Yes, I have lesions – hundreds of them – everywhere I feel pain. And no, I have not had a PET/CT since about eight months before the transplant (at that time I was responding to Kyprolis and Cytoxan) and the radiologist found myeloma activity, but at low levels. My oncologist is reluctant to order another because I have a history of lots of high-radiation imaging. Would an MRI be useful? I have read that a PET/CT picks up active myeloma while an MRI doesn’t.
Yes, the pain is more or less identical to what I experienced before Kyprolis. The Kyprolis made no difference to either the quality or intensity of the pain.
Thanks again for your help.
Thanks very much for offering to ask your myeloma specialist about the pump, and thanks for those threads, which were very helpful. Some patients – perhaps,the majority – seem to find that the pump brings better pain control, but there is the risk of infection and other complications, And, for some, it seems to be no better than less invasive ways of taking pain medication.
Yes, I have lesions – hundreds of them – everywhere I feel pain. And no, I have not had a PET/CT since about eight months before the transplant (at that time I was responding to Kyprolis and Cytoxan) and the radiologist found myeloma activity, but at low levels. My oncologist is reluctant to order another because I have a history of lots of high-radiation imaging. Would an MRI be useful? I have read that a PET/CT picks up active myeloma while an MRI doesn’t.
Yes, the pain is more or less identical to what I experienced before Kyprolis. The Kyprolis made no difference to either the quality or intensity of the pain.
Thanks again for your help.
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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: Intrathecal pain pump - what to expect?
Hi ZippyZelda,
I have tried an epidural steroid injection as well as acupuncture to no effect, unfortunately. I have not tried ketamine,
I would indeed be concerned about infection with the pump, I have also read of multiple cases where the pump has failed, requiring replacement.
As far as pain elsewhere in the body, my understanding is that the spinal cord is the conduit to the brain for all nerve input anywhere in the body, and that therefore, introducing pain medication to the fluid surrounding it, which is what the pump does, should address all the loci of my bone pain. Is that not correct?
Thank you very much for your post,
I have tried an epidural steroid injection as well as acupuncture to no effect, unfortunately. I have not tried ketamine,
I would indeed be concerned about infection with the pump, I have also read of multiple cases where the pump has failed, requiring replacement.
As far as pain elsewhere in the body, my understanding is that the spinal cord is the conduit to the brain for all nerve input anywhere in the body, and that therefore, introducing pain medication to the fluid surrounding it, which is what the pump does, should address all the loci of my bone pain. Is that not correct?
Thank you very much for your post,
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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: Intrathecal pain pump - what to expect?
Hi Mr. PH,
While a PET/CT can clearly show active hot spots of cancer activity and most any layman can pick out a hot spot on a PET/CT image, a radiologist can also differentiate between non-active and active lesions and can identify areas of myeloma activity within the bone marrow if the proper contrast and "diffuse weighting" techniques are utilized with an MRI.
You might find this article to be a good read if you are interested in pursuing an MRI:
Dutoit, JC, and Verstraete, KL, "MRI in multiple myeloma: a pictorial review of diagnostic and post-treatment findings," Insights Into Imaging, August 2016 (full text of article)
While a PET/CT can clearly show active hot spots of cancer activity and most any layman can pick out a hot spot on a PET/CT image, a radiologist can also differentiate between non-active and active lesions and can identify areas of myeloma activity within the bone marrow if the proper contrast and "diffuse weighting" techniques are utilized with an MRI.
You might find this article to be a good read if you are interested in pursuing an MRI:
Dutoit, JC, and Verstraete, KL, "MRI in multiple myeloma: a pictorial review of diagnostic and post-treatment findings," Insights Into Imaging, August 2016 (full text of article)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Intrathecal pain pump - what to expect?
Hi Mr. PH,
I met with my myeloma specialist today. He does not recommend intrathecal pumps for all the reasons previously cited. None of his patients are using an intrathecal pump. Obviously, this is just one doctor's opinion and other myeloma specialists may have a different view on the matter.
Perhaps it would be worth the time to consult a palliative care doctor or a different myeloma specialist on how to best get some relief?
I met with my myeloma specialist today. He does not recommend intrathecal pumps for all the reasons previously cited. None of his patients are using an intrathecal pump. Obviously, this is just one doctor's opinion and other myeloma specialists may have a different view on the matter.
Perhaps it would be worth the time to consult a palliative care doctor or a different myeloma specialist on how to best get some relief?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Intrathecal pain pump - what to expect?
Multibilly,
Thanks for the info on PET/CT’s and MRI’s.
And thanks especially for running the pump idea by your specialist. His response is not a surprise.
Yes, another meeting with a palliative care specialist is in order,
In fact, with my chronic pain problems, I think I need to have a permanent member of my care team with this training. I had that where I had my transplant, since they are a teaching hospital and use a team approach for diseases that can be systemic, like most forms of cancer. Palliative care is part of the team for multiple myeloma, in particular.
But my home hospital is not organized that way and one has to build his or her own team.
And I would encourage everyone with multiple myeloma to get at least a consult with a palliative care specialist if you have pain.
In my case, I have just had the opportunity to pick an internist who is also a palliative care specialist as my new primary care physician, when my current one left. My oncologist is very good, but he just looks at my numbers to monitor and treat my myeloma, and is by his own admission not the best resource for pain control. The myeloma specialists at my transplant hospital were like that, too.
My oncologist’s view is that the pain is caused by permanent structural changes from my bone damage, and I may just need pain medications for the rest of my life, But the current medications don’t do much, and I still would like a more precise analysis of exactly what is generating the pain,
When I had my first and only PET/CT several months before my transplant, the radiologist’s report said that there were several hot spots in the vicinity of my four supposedly healed old vertebral compression fractures, but also stated that these could be either normal osteoblastic activity or myeloma activity. That struck me as odd, because, like you, I thought that a radiologist should be able to definitively make the call on whether there were active myeloma lesions using a whole body PET/CT.
Even if my oncologist is right about the permanent damage, I would expect some improvement in my pain almost eight months after the transplant based on reports I have read on this forum.
My worry is that I may still have some active myeloma in my bones, perhaps from a fully nonsecretory clone in addition to the kappa light chain strain concerning which I am now in complete response.
Or perhaps there is still active kappa light chain myeloma lesions in my bones that would require one of the newer minimal residual disease tests for detection based on serum analysis, if in fact these are more sensitive than the existing free light chain serum test.
I asked my oncologist whether a nonsecretory clone is a possibility to explain my high level of continued pain, and he said that would be highly unusual, But he didn’t say why, and my reading on the Beacon and elsewhere supports the idea that multiple different myeloma clones might be the rule rather than the exception among most patients,
Thanks again for sharing your very extensive knowledge!
Thanks for the info on PET/CT’s and MRI’s.
And thanks especially for running the pump idea by your specialist. His response is not a surprise.
Yes, another meeting with a palliative care specialist is in order,
In fact, with my chronic pain problems, I think I need to have a permanent member of my care team with this training. I had that where I had my transplant, since they are a teaching hospital and use a team approach for diseases that can be systemic, like most forms of cancer. Palliative care is part of the team for multiple myeloma, in particular.
But my home hospital is not organized that way and one has to build his or her own team.
And I would encourage everyone with multiple myeloma to get at least a consult with a palliative care specialist if you have pain.
In my case, I have just had the opportunity to pick an internist who is also a palliative care specialist as my new primary care physician, when my current one left. My oncologist is very good, but he just looks at my numbers to monitor and treat my myeloma, and is by his own admission not the best resource for pain control. The myeloma specialists at my transplant hospital were like that, too.
My oncologist’s view is that the pain is caused by permanent structural changes from my bone damage, and I may just need pain medications for the rest of my life, But the current medications don’t do much, and I still would like a more precise analysis of exactly what is generating the pain,
When I had my first and only PET/CT several months before my transplant, the radiologist’s report said that there were several hot spots in the vicinity of my four supposedly healed old vertebral compression fractures, but also stated that these could be either normal osteoblastic activity or myeloma activity. That struck me as odd, because, like you, I thought that a radiologist should be able to definitively make the call on whether there were active myeloma lesions using a whole body PET/CT.
Even if my oncologist is right about the permanent damage, I would expect some improvement in my pain almost eight months after the transplant based on reports I have read on this forum.
My worry is that I may still have some active myeloma in my bones, perhaps from a fully nonsecretory clone in addition to the kappa light chain strain concerning which I am now in complete response.
Or perhaps there is still active kappa light chain myeloma lesions in my bones that would require one of the newer minimal residual disease tests for detection based on serum analysis, if in fact these are more sensitive than the existing free light chain serum test.
I asked my oncologist whether a nonsecretory clone is a possibility to explain my high level of continued pain, and he said that would be highly unusual, But he didn’t say why, and my reading on the Beacon and elsewhere supports the idea that multiple different myeloma clones might be the rule rather than the exception among most patients,
Thanks again for sharing your very extensive knowledge!
-
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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