Can anybody point me to any good resources that describe what sort of things one can do to avoid peripheral neuropathy (PN) if you're taking a medication that's likely to have PN as a side effect?
Are there any medications one can take to help avoid PN? What about vitamin or mineral supplements? Or specific foods that might help?
Any advice on this issue would be greatly appreciated.
Thanks!
Forums
Re: Preventing peripheral neuropathy?
Hi Ricardo,
Don't know if there is a "magic" pill or supplement, but one thing I do for my husband regularly, is give him a good old fashioned foot massage, several times a week. He was taking Velcade through 4 courses, and never got an symptoms of neuropathy. His doc says that there isn't any documented evidence that this can prevent it, but it certainly doesn't hurt to try. It can break up alot of the toxins in the body, increase circulation, and help one feel alot better.
Regards,
Debi
Don't know if there is a "magic" pill or supplement, but one thing I do for my husband regularly, is give him a good old fashioned foot massage, several times a week. He was taking Velcade through 4 courses, and never got an symptoms of neuropathy. His doc says that there isn't any documented evidence that this can prevent it, but it certainly doesn't hurt to try. It can break up alot of the toxins in the body, increase circulation, and help one feel alot better.
Regards,
Debi
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Debi Mazzotta - Name: Debi and Jamey Mazzotta
- Who do you know with myeloma?: Jamey
- When were you/they diagnosed?: August 2009
- Age at diagnosis: 62
Re: Preventing peripheral neuropathy?
Hi Debi - Thanks for the tip about massage and PN.
I'm going to look into this some more over the next few weeks, and I'll try to post updates here now and then about what I find.
The first thing I've found is that vitamin E may help prevent PN. In fact, the National Cancer Institute is doing a clinical trial right now that is testing this idea:
http://clinicaltrials.gov/ct2/show/NCT00363129
Also, at least one small clinical study showed vitamin E could have a rather big impact on whether or not patients on chemo get PN. See this:
http://www.neurology.org/cgi/content/abstract/64/1/26
Here are the main results: "The incidence of neurotoxicity differed between thetwo groups, occurring in 4/16 (25%) patients assigned in thevitamin E supplementation group and in 11/15 (73.3%) patientsassigned in the control group (p = 0.019). Mean peripheral neuropathyscores were 3.4 ± 6.3 for patients [who took vitamin E] and 11.5± 10.6 for patients [who did not take vitamin E]"
Like I said, I'm going to look into this some more and let people know what I find.
I'm going to look into this some more over the next few weeks, and I'll try to post updates here now and then about what I find.
The first thing I've found is that vitamin E may help prevent PN. In fact, the National Cancer Institute is doing a clinical trial right now that is testing this idea:
http://clinicaltrials.gov/ct2/show/NCT00363129
Also, at least one small clinical study showed vitamin E could have a rather big impact on whether or not patients on chemo get PN. See this:
http://www.neurology.org/cgi/content/abstract/64/1/26
Here are the main results: "The incidence of neurotoxicity differed between thetwo groups, occurring in 4/16 (25%) patients assigned in thevitamin E supplementation group and in 11/15 (73.3%) patientsassigned in the control group (p = 0.019). Mean peripheral neuropathyscores were 3.4 ± 6.3 for patients [who took vitamin E] and 11.5± 10.6 for patients [who did not take vitamin E]"
Like I said, I'm going to look into this some more and let people know what I find.
Re: Preventing peripheral neuropathy?
I found another study on vitamin E and peripheral neuropathy. It's a study that was done by some Italian researchers. Here is the abstract:
http://www.neurology.org/cgi/content/abstract/74/9/762
It involved cancer patients who were taking cisplatin, which seems to be a common chemotherapy drug. It often has PN as a side effect.
The study involved over 100 patients who were split into two groups, one that received vitamin E in addition to their chemo, and a second group that received a placebo instead of the vitamin E.
The group that got the vitamin E had noticeably less PN than the group that got placebo. Here are the main results: "The incidence of neurotoxicity was significantly lower in group 1 (5.9%) than in group 2 (41.7%) (p < 0.01). The severity of neurotoxicity, measured with a validated neurotoxicity score (Total Neuropathy Score [TNS]), was significantly lower in patients receiving vitamin E than those receiving placebo (mean TNS 1.4 vs 4.1...)".
The patients who got vitamin E took 400 mg/day in the form of "alpha-tocopherol". I don't know, though, if this is a common form of vitamin E.
Question: Does anyone know if vitamin E typically prescribed to myeloma patients who might get PN?
Based on these studies, it seems like it should be.
I'll keep digging to see what else I can find on this. I'm still curious if anyone else has any information they can add.
Thanks!
http://www.neurology.org/cgi/content/abstract/74/9/762
It involved cancer patients who were taking cisplatin, which seems to be a common chemotherapy drug. It often has PN as a side effect.
The study involved over 100 patients who were split into two groups, one that received vitamin E in addition to their chemo, and a second group that received a placebo instead of the vitamin E.
The group that got the vitamin E had noticeably less PN than the group that got placebo. Here are the main results: "The incidence of neurotoxicity was significantly lower in group 1 (5.9%) than in group 2 (41.7%) (p < 0.01). The severity of neurotoxicity, measured with a validated neurotoxicity score (Total Neuropathy Score [TNS]), was significantly lower in patients receiving vitamin E than those receiving placebo (mean TNS 1.4 vs 4.1...)".
The patients who got vitamin E took 400 mg/day in the form of "alpha-tocopherol". I don't know, though, if this is a common form of vitamin E.
Question: Does anyone know if vitamin E typically prescribed to myeloma patients who might get PN?
Based on these studies, it seems like it should be.
I'll keep digging to see what else I can find on this. I'm still curious if anyone else has any information they can add.
Thanks!
Re: Preventing peripheral neuropathy?
Dr. Paul Richardson from the Dana-Farber Cancer Institute said:
"Please see below for some suggestions - please note that dose reduction and schedule change are key to minimising PN; supplements should not be taken on the same day of Velcade (bortezomib) administration as there are reports of antagonism preclinically (ie in the lab), although this has not been shown in patients. All supplements must be discussed with and approved by the treating physicians concerned. Supplements should be taken with food unless otherwise indicated.
MULTI-B COMPLEX VITAMINS
with B1, B6, B12, folic acid and other
B6 should be approximately 50mg daily,not to exceed 100mg per day
Folic acid should be 1mg per day
VITAMIN E
400 IU daily
VITAMIN D
400-800 IU daily
FISH OILS
OMEGA-3 FATTY ACIDS (EPA and DHA)
MAGNESIUM
Suggested doses include: 250mg twice a day (OTC)
Alternatively 400mg daily by prescription with dose frequency dependent on serum magnesium levels
May cause diarrhea in larger doses
POTASSIUM
Either as provided by the treating physician or foods that are rich in potassium (e.g. bananas, oranges and potato).
TONIC WATER (Seltzer water)
Drink one glass in evening and any other time cramping occurs
ACETYL L- CARNITINE
500mg twice a day with food
Can take up to 2000mg a day.
ALPHA-LIPOIC ACID
300mg to 1000mg a day with food
Glutamine
1g up to three times a day with food"
"Please see below for some suggestions - please note that dose reduction and schedule change are key to minimising PN; supplements should not be taken on the same day of Velcade (bortezomib) administration as there are reports of antagonism preclinically (ie in the lab), although this has not been shown in patients. All supplements must be discussed with and approved by the treating physicians concerned. Supplements should be taken with food unless otherwise indicated.
MULTI-B COMPLEX VITAMINS
with B1, B6, B12, folic acid and other
B6 should be approximately 50mg daily,not to exceed 100mg per day
Folic acid should be 1mg per day
VITAMIN E
400 IU daily
VITAMIN D
400-800 IU daily
FISH OILS
OMEGA-3 FATTY ACIDS (EPA and DHA)
MAGNESIUM
Suggested doses include: 250mg twice a day (OTC)
Alternatively 400mg daily by prescription with dose frequency dependent on serum magnesium levels
May cause diarrhea in larger doses
POTASSIUM
Either as provided by the treating physician or foods that are rich in potassium (e.g. bananas, oranges and potato).
TONIC WATER (Seltzer water)
Drink one glass in evening and any other time cramping occurs
ACETYL L- CARNITINE
500mg twice a day with food
Can take up to 2000mg a day.
ALPHA-LIPOIC ACID
300mg to 1000mg a day with food
Glutamine
1g up to three times a day with food"
Re: Preventing peripheral neuropathy?
PN is caused by damage to nerves.
Here are a couple of suggestions that haven't been mentioned yet:
1. Alcohol is neurotoxic, and will contribute to PN even in very small amounts (one drink).
2. Many of us with myeloma are also diabetic, or pre diabetic. Too much, or too little, blood sugar damages nerves. Maintaining tight control over glucose levels will help to minimize PN.
3. Revlimid and Thalomid inhibit or prevent the development of microcapillaries which can reduce circulation in your extremities and make PN worse. Keeping your hands and feet warm can assist in circulation and reduce PN. Support hose should be avoided if possible, as this also reduces circulation.
4. Nicotine reduces surface blood flow by constricting capillaries, and probably also makes PN worse. Note also that nicotine stimulates angiogenesis (opposite of Rev and thalidomide), and therefore might also stimulate tumor growth.
FrankH
Here are a couple of suggestions that haven't been mentioned yet:
1. Alcohol is neurotoxic, and will contribute to PN even in very small amounts (one drink).
2. Many of us with myeloma are also diabetic, or pre diabetic. Too much, or too little, blood sugar damages nerves. Maintaining tight control over glucose levels will help to minimize PN.
3. Revlimid and Thalomid inhibit or prevent the development of microcapillaries which can reduce circulation in your extremities and make PN worse. Keeping your hands and feet warm can assist in circulation and reduce PN. Support hose should be avoided if possible, as this also reduces circulation.
4. Nicotine reduces surface blood flow by constricting capillaries, and probably also makes PN worse. Note also that nicotine stimulates angiogenesis (opposite of Rev and thalidomide), and therefore might also stimulate tumor growth.
FrankH
Re: Preventing peripheral neuropathy?
Great discussion so far.
Couple of basic comments
1) There are no randomized controlled published studies of any drug or supplement in myeloma patients looking to prevent or treat peripheral neuropathy
2) There is no basis to make the use of alcohol prohibited -- hey, this is myeloma, a drink here in there is just fine.
3) There has been no evidence that any supplement improves peripheral neuropathy in myeloma patients. While many supplements can be purchased (remember who benefits from this -- hint hint, it's not the patient!), none has proven effective. While there is scant evidence of vitamin E, this is also a fat-soluble vitamin whose excess ingestion has been linked to numerous bad outcomes and hence we don't recommend it.
4) Velcade-induced neuropathy can take months and months to remit. We often state that tingling alone can resolve in a week, tingling and numbness can take months, tingling/numbness/pain can take a year, and severe painful neuropathy will likely get better but never fully resolve. This is not a very positive thing to tell a patient, but it's the truth.
Finally the most important thing about peripheral neuropathy is to prevent it before it happens. How can this be done? Critically patients must communicate with their doctors about tingling, numbness, or burning in the hands or feet as the doctor can then make a dose adjustment in the chemotherapy and prevent the neuropathy from getting any worse. Yes, this means the drugs won't be as effective, but it also means that the patient sometimes doesn't get saddled with painful neuropathy for the rest of his/her life.
Couple of basic comments
1) There are no randomized controlled published studies of any drug or supplement in myeloma patients looking to prevent or treat peripheral neuropathy
2) There is no basis to make the use of alcohol prohibited -- hey, this is myeloma, a drink here in there is just fine.
3) There has been no evidence that any supplement improves peripheral neuropathy in myeloma patients. While many supplements can be purchased (remember who benefits from this -- hint hint, it's not the patient!), none has proven effective. While there is scant evidence of vitamin E, this is also a fat-soluble vitamin whose excess ingestion has been linked to numerous bad outcomes and hence we don't recommend it.
4) Velcade-induced neuropathy can take months and months to remit. We often state that tingling alone can resolve in a week, tingling and numbness can take months, tingling/numbness/pain can take a year, and severe painful neuropathy will likely get better but never fully resolve. This is not a very positive thing to tell a patient, but it's the truth.
Finally the most important thing about peripheral neuropathy is to prevent it before it happens. How can this be done? Critically patients must communicate with their doctors about tingling, numbness, or burning in the hands or feet as the doctor can then make a dose adjustment in the chemotherapy and prevent the neuropathy from getting any worse. Yes, this means the drugs won't be as effective, but it also means that the patient sometimes doesn't get saddled with painful neuropathy for the rest of his/her life.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: Preventing peripheral neuropathy?
Hi Craig
The basis for avoiding alcohol is that it is a neurotoxin which damages and destroys nerve cells.
I am speaking from personal experience as a myeloma patient, and as a PhD with a strong background in biochemistry.
In my own case, all it takes is one drink to set of an episode of permanently increased tingling and numbness. Otherwise, the Revlimid and dex I am taking are not a problem as long as I avoid alcohol.
FrankH
The basis for avoiding alcohol is that it is a neurotoxin which damages and destroys nerve cells.
I am speaking from personal experience as a myeloma patient, and as a PhD with a strong background in biochemistry.
In my own case, all it takes is one drink to set of an episode of permanently increased tingling and numbness. Otherwise, the Revlimid and dex I am taking are not a problem as long as I avoid alcohol.
FrankH
Re: Preventing peripheral neuropathy?
Your experience is atypical and there is a big difference between alcohol ingested and dousing nuerons with a high concentration of alcohol in the medium.
That said, I ain't arguing with your experience in any way. Best to avoid alcohol completely in your case.
That said, I ain't arguing with your experience in any way. Best to avoid alcohol completely in your case.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Alcohol, Revlimid and neuropathy
Hi Craig
The package inserts for Thalomid and Revlimid both warn against using alcohol while taking these drugs. Neither explains why, but references to "complications" can be found with a google search.
Neuropathy is a well known complication of excessive alcohol consumption, and alcohol is well known to exacerbate the effects of many drugs.
Drugs often act synergistically, sometimes beneficially, sometimes not. It is prudent to avoid taking any substance which is known to have the ability to cause the side effects you are trying to avoid.
FrankH
The package inserts for Thalomid and Revlimid both warn against using alcohol while taking these drugs. Neither explains why, but references to "complications" can be found with a google search.
Neuropathy is a well known complication of excessive alcohol consumption, and alcohol is well known to exacerbate the effects of many drugs.
Drugs often act synergistically, sometimes beneficially, sometimes not. It is prudent to avoid taking any substance which is known to have the ability to cause the side effects you are trying to avoid.
FrankH
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