Pat’s Place: Tips For Battling Peripheral Neuropathy, From A Patient's Perspective
Peripheral neuropathy (PN) is a common side effect of a number of chemotherapy drugs used to treat multiple myeloma. Symptoms range from tingling or numbness of the toes, fingers, feet, hands, or legs, to severe pain—and everything in between.
Like many multiple myeloma patients, I suffer from PN. Some of it began even before I began treatment, most likely caused by nerve compression in and around my damaged vertebrae. Once I began treatment, it rapidly got worse.
My hands became so unsteady it was (and still is) difficult for me to write or print. My hands, feet, and legs from the knees down often feel like they are asleep.
My PN is often worse towards the end of my Revlimid (lenalidomide) cycle. It tends to improve after I stop taking the drug for a week or two each month. It improves, but is never gone.
Fortunately for me, I have not experienced any nerve pain associated with my PN. Other patients are not so lucky. One patient described the pain from their PN to be like “hot needles repeatedly being stuck into the nerves of their feet.”
I have also been told by my fellow patients that traditional pain killers or narcotics do little to dull the pain. Instead, these patients turn to nutritionalists, acupuncturists, homeopathic doctors, and other more conventional medical experts, hoping to find ways to lesson the symptoms.
Sometimes traditional or unconventional methods help. Often they do not. Most patients can achieve some relief by trial and error.
Here are some suggestions for improving PN symptoms that I have received from doctors and my fellow myeloma patients over the years:
Gabapentin (Neurontin) - Gabepentin is a prescription medication. It is relatively inexpensive and, according to two of my doctors, very safe. I know a number of patients who take it and swear by the results. I take it, and it helps me a lot. It barely works for others. Slowly increase the dose until you see results.
Neuragen - The patient who wrote me about this gets it at Walgreen's. The cost is around $30.00, but several magazines (AARP, Smithsonian, etc.) have $5.00 coupons. You can use it as much as four times a day, but this patient, named Bonnie, usually only used it in the morning.
Alpha Lipoic Acid - Doses vary. Check with your doctor, but be careful: Clinical studies have hinted alpha lipoic acid may interfere with the effectiveness of Velcade (bortezomib).
Medrol (methylprednisolone) - Medrol is a synthetic (man-made) corticosteroid that may help reduce inflammation of the nerve linings.
Vitamins – Vitamins can help, especially vitamin B12, vitamin Super B-Complex, vitamin E, vitamin D3, and folic acid.
Magnesium - Magnesium can be taken orally or rubbed on the skin of affected areas. Several brands of magnesium oil are available for topical use. Several patients I know rave about magnesium oil. They massage the oil on their legs when they get up in the morning and before bed.
Heat Shock 90 Inhibitors - Dr. Ken Anderson, a well known multiple myeloma expert from Boston, suggests that if you add a heat shock 90 inhibitor you can decrease neuropathy and enhance the efficacy of Velcade.
Exercise - Exercise every day. Keep moving! Walk, swim, do yoga, or ride a bike.
Maybe our readers can suggest a few more traditional or home remedies for peripheral neuropathy.
One thing is certain: Nearly every multiple myeloma patient suffers from some degree of PN post diagnosis. Hopefully you can find something that works for you.
Feel good and keep smiling! Pat
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Thanks, Pat, for the excellent tips on how to battle peripheral neuropathy.
Additional tips from other myeloma patients on how to prevent peripheral neuropathy
and to manage the pain associated with it can be found on the Beacon forums. There has also been a discussion prompted by a previous news article about whether hot or cold water can help ease pain from peripheral neuropathy.
I appreciate your taking the time to provide links to other articles about PN, Maike! Thanks for contributing! Pat
Pat:
Thank you so much for your contributions and tips. I am the caretaker for my husband who was diagnosed with MM in 2/08. He had a stem cell transplant in 8/08 and is doing very well. I am keeping copies of your articles should we need to refer to them later. You have a lot of good ideas. I (and I am sure many others) appreciate your willingness to share.
Dianna-
How exciting your husband is doing so well! Sounds like he is a lucky guy to have you helping him. Good luck to you both! Pat
Hi Pat, I'm a medical doctor who is not an oncologist, but I have a special interest in multiple myeloma because it is increasing in incidence in the first responders to the 9/11 incident, some of whom are my patients. Yes, peripheral neuropathy is a serious problem for people after chemo, with not only pain but a loss of function, both of which can be life-altering. I have been using a combination of the R form of alpha lipoic acid (RALA) with the amino acid acetyl-L-carnitine (ALCAR) to both prevent and treat the neuropathy. This combination has been used with success in patients with diabetic peripheral neuropathy, which results from the nerves being coated with sugar, which decreases their function. This combination of nutrients not only prevents sugar deposition but also increases oxygen delivery to the nerves, which is how it potentially can help the neuropathy of myeloma patients. A word of caution is that RALA is different from the typical ALA sold over the counter. You can buy RALA in some health food stores, but unless it is kept refrigerated it has lost it's potency, and I have yet to see the store that keeps it chilled. So what do you do? There are a couple manufacturers who ship it chilled from the factory, which is one option, but the best option is to get either the sodium-RALA or potassium-RALA, which do not have to be kept cold and probably have better bioavailability. Also, the RALA is fat soluble and should be taken with food containing fat or oil, and the ALCAR, being a protein, should be taken on an empty stomach, so that it doesn't have to compete with the proteins in your food for adsorption. I would recommend that anyone who is thinking about using this combination talks about it with their oncologist and/or other health care provider, which is why I have not included doses in this post. When approaching your MD about this, make sure and tell them that this is not just a health food store fad, that extensive research has been done using these nutrients not only for diabetic neuropathy but also in other conditions such as Alzheimer's (this combination improves mitochondrial function, which is one reason that it helps neuropathy as well) and HIV/AIDS (improvement of CD4 cell counts/immune function).
As far as medical marijuana goes, I'm not especially in favor of it. The side effect of getting high from it is really not good, not to mention lung damage from daily smoking, and short term memory loss. A cream sounds like a good idea, however, since it probably is not intoxicating. Also,you do not have to smoke it, and yes, you can eat it. THC comes in a pill form that is sometimes used to increase appetite in patients with cancer or AIDS. In my opinion, the pill form is the best form, since I've seen numerous young men who smoke pot daily end up with emphysema despite not smoking cigarettes. I have not seen marijuana smokers getting lung cancer, however, but I don't know of any research on that subject.
Wishing the best to you and all the myeloma survivors!
Thanks so much for the detailed info about PN. I will use this material in a future column, book or blog post. I will keep you updated- Pat
Anything that I can do to get rid of this neuropathy I will try. Right now I take 30mg of oxycotine twice a day which does help with the discomfort but I want to get rid of it permanently. I also take b6,b12,folic acid and vitamin e. I was taking neurotin for a while but it absolutely did nothing for me. Does anybody have any other ideas or cures.
How much neurotin (gabapentin) were you taking? Six capsules a day recently made a difference for me. Good luck!
I was only taking 2 pills per day per doctors orders.