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Peripheral neuropathy - treatment options?
What do we do with peripheral neuropathy? What are the treatment options?
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: Peripheral neuropathy - treatment options?
Hello Amo,
We hope your peripheral neuropathy is not too bad.
In addition to the responses that you may get here to your question, these links may be helpful to you and others who arrive at this thread looking for information related to peripheral neuropathy:
Peripheral neuropathy news and opinion articles at The Myeloma Beacon
Peripheral neuropathy forum discussions at The Beacon.
These articles, in particular, may be worth reviewing:
"Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 1: What Is It And Who Is At Risk?", The Myeloma Beacon, March 26, 2012.
"Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 2: Treatment," The Myeloma Beacon, March 30, 2012
"Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 3: Prevention And Future Directions," The Myeloma Beacon, April 2, 2012.
Finally, just for future reference, this posting with lots of quick links to forum discussions about specific treatments and side effects is always a good place to start to see if there already have been forum discussions about questions you may have on such topics.
Good luck!
We hope your peripheral neuropathy is not too bad.
In addition to the responses that you may get here to your question, these links may be helpful to you and others who arrive at this thread looking for information related to peripheral neuropathy:
Peripheral neuropathy news and opinion articles at The Myeloma Beacon
Peripheral neuropathy forum discussions at The Beacon.
These articles, in particular, may be worth reviewing:
"Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 1: What Is It And Who Is At Risk?", The Myeloma Beacon, March 26, 2012.
"Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 2: Treatment," The Myeloma Beacon, March 30, 2012
"Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 3: Prevention And Future Directions," The Myeloma Beacon, April 2, 2012.
Finally, just for future reference, this posting with lots of quick links to forum discussions about specific treatments and side effects is always a good place to start to see if there already have been forum discussions about questions you may have on such topics.
Good luck!
Re: Peripheral neuropathy - treatment options?
Peripheral neuropathy is a difficult side effect of different anti-myeloma agents, with thalidomide and Velcade being the most frequent culprits. They are different: thalidomide-induced peripheral neuropathy is generally not reversible, whereas Velcade-induced peripheral neuropathy is reversible with time (2/3 will reduce within 6-9 months).
- Prevention (subcutaneous and/or weekly dosing of Velcade as examples) and judicious dose adjustments are the first line of defense.
- There are a number of cocktails, salves, supplements that have been shown to help.
- Medications specifically targeting neuropathic pain (Lyrica [pregabalin], gabapentin [Neurontin])
- Psychotropic meds - these also affect neuropathic pain (amitriptyline, nortriptyline, or duloxetine [Cymbalta])
- Narcotics.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Peripheral neuropathy - treatment options?
Going for my second BMT (bone marrow transplant) on September 29. Am 63 now and having quite a lot of peripheral neuropathy, but I am taking Neurontin and praying that Velcade-induced neuropathy will reduce with time. I have lost about 3/4 feeling in my feet except for the pain!
But, I know many people are having worse troubles than me. God, good doctors, and a wonderful partner are my foundation. So good thoughts to all in same situation with the myeloma.
But, I know many people are having worse troubles than me. God, good doctors, and a wonderful partner are my foundation. So good thoughts to all in same situation with the myeloma.
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Glen
Re: Peripheral neuropathy - treatment options?
Hi there.
I've had PN since my first chemo infusion 7 years ago. I've learned to live with it. I've tried every treatment out there, but decided that, since it is permanent, I need to adjust to it without medication (was on methadone for 4 years for example).
I have found that massaging my feet and legs every day with the best massage lotion or oil you can find works wonders. The soothing action is just wonderful. If you need to, you can use any of the topical lotions that have capsaicin as a main ingredient are go.
What works well for me is walking in cold wet sand. I am lucky enough to live near the beach, but you can create your own by using a flat plastic bin with a lid for protection, and filling it with regular sand (a couple of inches so you don't feel the plastic bottom). The add cold water so that the sand is activated. The sand crystals, once wet, make a marvelous massaging action. I also use this time for meditation and put on some wave meditation music so you think you are at the beach.
Hope this is helpful. I know it's disappointing that there isn't more to be done, but keep searching for the non-medication options that might work for you (acupuncture, laser treatment from foot doctor, etc.)
Mike
I've had PN since my first chemo infusion 7 years ago. I've learned to live with it. I've tried every treatment out there, but decided that, since it is permanent, I need to adjust to it without medication (was on methadone for 4 years for example).
I have found that massaging my feet and legs every day with the best massage lotion or oil you can find works wonders. The soothing action is just wonderful. If you need to, you can use any of the topical lotions that have capsaicin as a main ingredient are go.
What works well for me is walking in cold wet sand. I am lucky enough to live near the beach, but you can create your own by using a flat plastic bin with a lid for protection, and filling it with regular sand (a couple of inches so you don't feel the plastic bottom). The add cold water so that the sand is activated. The sand crystals, once wet, make a marvelous massaging action. I also use this time for meditation and put on some wave meditation music so you think you are at the beach.
Hope this is helpful. I know it's disappointing that there isn't more to be done, but keep searching for the non-medication options that might work for you (acupuncture, laser treatment from foot doctor, etc.)
Mike
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micallie
Re: Peripheral neuropathy - treatment options?
Here is a very recent paper published on the topic of peripheral neuropathy and treatment.
As a fellow sufferer after Velcade usage I can concur with the findings. Duloxetine is mentioned, and whilst I found that this did help to some degree, the downside was lack of sleep (a known side effect. I am still searching for the Holy Grail in terms of resolving my own peripheral neuropathy.
Article information:
Loprinzi, CL, et al, "Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers: ASCO Guideline Update," Journal of Clinical Oncology, Oct 1 2020 (full text of article)
Article abstract:
Purpose: To update the ASCO guideline on the recommended prevention and treatment approaches in the management of chemotherapy-induced peripheral neuropathy (CIPN) in adult cancer survivors.
Methods: An Expert Panel conducted targeted systematic literature reviews to identify new studies.
Results: The search strategy identified 257 new references, which led to a full-text review of 87 manuscripts. A total of 3 systematic reviews, 2 with meta-analyses, and 28 primary trials for prevention of CIPN in addition to 14 primary trials related to treatment of established CIPN, are included in this update.
Recommendations: The identified data reconfirmed that no agents are recommended for the prevention of CIPN. The use of acetyl-l-carnitine for the prevention of CIPN in patients with cancer should be discouraged. Furthermore, clinicians should assess the appropriateness of dose delaying, dose reduction, substitutions, or stopping chemotherapy in patients who develop intolerable neuropathy and/or functional impairment. Duloxetine is the only agent that has appropriate evidence to support its use for patients with established painful CIPN. Nonetheless, the amount of benefit from duloxetine is limited.
As a fellow sufferer after Velcade usage I can concur with the findings. Duloxetine is mentioned, and whilst I found that this did help to some degree, the downside was lack of sleep (a known side effect. I am still searching for the Holy Grail in terms of resolving my own peripheral neuropathy.
Article information:
Loprinzi, CL, et al, "Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers: ASCO Guideline Update," Journal of Clinical Oncology, Oct 1 2020 (full text of article)
Article abstract:
Purpose: To update the ASCO guideline on the recommended prevention and treatment approaches in the management of chemotherapy-induced peripheral neuropathy (CIPN) in adult cancer survivors.
Methods: An Expert Panel conducted targeted systematic literature reviews to identify new studies.
Results: The search strategy identified 257 new references, which led to a full-text review of 87 manuscripts. A total of 3 systematic reviews, 2 with meta-analyses, and 28 primary trials for prevention of CIPN in addition to 14 primary trials related to treatment of established CIPN, are included in this update.
Recommendations: The identified data reconfirmed that no agents are recommended for the prevention of CIPN. The use of acetyl-l-carnitine for the prevention of CIPN in patients with cancer should be discouraged. Furthermore, clinicians should assess the appropriateness of dose delaying, dose reduction, substitutions, or stopping chemotherapy in patients who develop intolerable neuropathy and/or functional impairment. Duloxetine is the only agent that has appropriate evidence to support its use for patients with established painful CIPN. Nonetheless, the amount of benefit from duloxetine is limited.
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wenlock00 - Name: Wenlock00
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
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