Lori Puente, author of Riding The Wave – Multiple Myeloma, recently wrote an excellent overview of peripheral neuropathy from a multiple myeloma caregiver’s point of view. She has graciously agreed to allow me to reproduce it here:
Peripheral Neuropathy (PN)
I’ve been avoiding writing a post on this… why? Because what works for one, or some, doesn’t always work for others. When you have cancer, migraines, back problems, depression or a whole host of other chronic illnesses, people come out of the woodwork to tell you what to try or what they read or what works for them (I’m guilty). Sometimes its helpful, and unfortunately, a lot of times its not.
When Dave (my husband) was diagnosed, if you read “Our Story” at his Caring Bridge Site, I asked that people NOT send Dave all their ideas or what they had heard or the latest cancer cure on the internet. I asked them to kindly send them to me. Again, my efforts were to receive them, and not to overwhelm Dave with all that I know is out there.
I have been what used to be called an “alternative” remedies gal my entire adult life. I treated my children during childhood with things other than prescriptions, antibiotics and over the counter medications. I used homeopathic remedies for my births, bee stings, ear infections, teething, fevers, cough, croup, you name it. I used other things too. The new term for a person like me is now is someone who uses “complimentary” therapies. Why? Because I do firmly believe in the benefits of modern medicine. I struggled like many parents with immunizing my children and giving them powerful drugs and prescriptions the Pediatrician advised. However, in the end, I did many things that most parents do and was just incredibly watchful of my children during the process. I do believe we are overprescribed and overmedicated.
My basic principal is this: Start with a flyswatter before the sledgehammer before the bulldozer before the bomb.
I would reach for the Robitussin like most mothers if after several attempts to ease my children’s (or my own) suffering was unsuccessful and it was 2 o’clock in the morning and we all needed REST! I believe that the human body is a remarkable vessel and can heal itself remarkably well with a little help and assistance. I am not a nurse or a doctor, just a Mom.
I had tremendous success and have two very balanced, healthy children who are now both in their 20′s. When my son was about 5 years old he had a very upset stomach. He came to me crying. I started to reach for a remedy and he said, “No Mommy. I want the ‘other’ stuff.” Confused I inquired, “other stuff?” Long story short, he wanted the medicine that he had seen other mothers giving their children. “Ohhhhh…” I said. ”OK, well let me tell you the difference between the two and you tell me which one you think you need.” From that moment on I happily empowered my child to tell me how much discomfort he was in and what he needed. I was thrilled. I always worried about me deciding how much pain he was in or could tolerate. I preferred for him to decide. I handled it with my daughter the same way and it was a very workable arrangement. Both children will take what they need as they see fit and still will often call me to get them something or ask for suggestions off the mainstream.
Now here I am faced with Dave’s Cancer and huge quantities of incredibly powerful chemotherapy drugs. One friend who is not exactly in the standard medicine camp (I’m being kind), asked me if Dave really needed to do this? This, being chemo, stem cell transplants, etc. I smiled and said, “Well if it were me, I might make a different choice. But its Dave and he wouldn’t have the confidence or interest in playing around with a different approach.” She nodded in understanding. This is a very important point in my mind. What I would do, what I think, etc., is irrelevant except for me. I was very cognizant of my husband’s preference of the standard, well traveled road, and I would support him in that effort. But how could I help him with all that I knew, without interfering with his treatment? The last thing I wanted to do was have him go through all of that physical abuse to his body and discover that I had impeded it somehow with my concoctions. I also didn’t think that Peppermint Tea would help his nausea! I was very realistic about that.
So I ask that you keep that in mind if you read my blog and I’m using some non western medicine sort of thing. Know that I have done my research, that I am conservative, that I have consulted with our physician.
One of the first things I did when we got to Little Rock was tell the physician a little about what I wrote here. I politely told him I wasn’t interested in his approval or his opinion. I simply wanted to be open, truthful and honest, and find a compromise so that we could work together to help Dave get through all of this. I was lucky. VERY LUCKY! We had a doctor that was respectful and did indeed work with us. He asked me if I would agree to refrain from anything unprescribed except his basic vitamins and nutrition during his actual chemotherapy. He said, “We just don’t know if it hurts, helps or does nothing.” Fair enough. I agreed and we have been doing it this way ever since. He is not our doctor anymore as he left the clinic, but I will be eternally grateful for his willingness to work with me in such a respectful and collaborative way. He even referred me to a Research Paper discussing the value of Ginseng to help with the fatigue!
Dave is currently on maintenance therapy of Revlimid (oral – daily) and Velcade (infusion-weekly). I have Dave refrain from EVERYTHING, including his vitamins on his Velcade days. Its easier for him to remember and it gives us a 12 hour window minimum on either side of the infusion. I have had several physicians who have told me it was one of the smartest things they had ever heard. One even said it was “brillant!” AW SHUCKS!
So, long way around getting to the PN problem. Peripheral Neuropathy as most of you know, and some may not, is a nerve damage issue. Chemotherapy commonly causes this tingling in the hands and feet. It can become very painful, and strangely, is often worse at night when a patient is trying to sleep. PN in a healthy individual can be caused by a Vitamin B deficiency. I know this, because it happened to me! How weird! So through my own research I knew that Dave would need loads of B6, B12 (shots preferably), Folic Acid, etc. Sure enough, the Oncologist prescribed all of that plus Neurontin (also known as Gabapentin). This drug has been around along time and is considered relatively safe. I didn’t particularly have a problem with it, except that it wasn’t working. If PN goes unaddressed the damage can become permanent. What I had discovered however is that Alpha Lipoic Acid can work very well in lieu of the Neurontin or in conjunction with it. It is indeed now being prescribed by oncologists routinely. I consulted with our doctor and he agreed to let me give it a whirl and Dave noticed his hands and feet tingling like crazy for about an hour and then it would go away. Each day the PN lessened and lessened until he was able to stop taking it except on an as needed basis. There are some concerns with ALA and Velcade, but again, on Velcade days, Dave takes nothing else except as prescribed by his doctors.
600 mg 2x daily up to 2400 mg if needed
As always, I encourage you to consult with your physician before tinkering around with stuff like this. US physicians are much more willing to work with “us” now because if they don’t, we’ll do it anyway and not tell them. This was proven to be the case some years ago in a survey of the American public when it was found that approximately 70% of patients were using ”alternative remedies” and not telling their physician. As a result The National Institutes of Health established an alternative/complimentary therapy clinic (NCCAM) to study the validity of the anecdotal evidence. Its important to understand that clinical trials are expensive and there simply is no monetary return in studying a lot of these herbs, vitamins, or remedies. We, who use them, don’t want them regulated either, so there in lies the difficulty.
Thanks for sharing, Lori! PN is a problem for most every multiple myeloma survivor. Our docs are not always the best source of info about how to combat PN. Research and learning from other patients is the key. This is a great start.
Type “peripheral neuropathy” into the search bar in the upper right hand side of my homepage, just below the banner. Click on the spyglass icon and a number of additional articles about PN will pop-up.
Feel good and keep smiling! Pat