The Continuing Hunt For a Peripheral Neuropathy Treatment

Peripheral Neuropathy caused by chemotherapy continues to bother me.

This condition is caused by nerve damage at the periphery of your body, so hands and feet, and causes sensations of numbness, mild pain and pins and needles (grade 1), moderate pain and some loss of function (grade 2) and can progress to sever pain and disability. It’s a side effect of some types of chemotherapy.

If you’re a regular follower of my blog you’ll recall that I had fibromyalgia before I was diagnosed with cancer. This condition also causes pins and needles in the hands and feet as well as pain throughout the body. The challenge for my doctors has been sorting out which of my symptoms are related to the fibromyalgia and which are related to the chemotherapy.

I developed grade 1 peripheral neuropathy towards the end of my chemotherapy and my doctor reduced the dose for my last two treatments of paclitaxel. Since finishing chemotherapy my peripheral neuropathy has worsened and it’s probably now grade 2, although my stubbornness and refusal to acknowledge it means that I’m still functioning fairly normally.

I tend to drop things because of the lack of feeling in my fingers and I need to be very, very careful with knives. I’m not complaining. A bit of pain in my hands and feet sure beats being dead! Still, I’m on a mission to find a cure, or at least to do everything I can to alleviate the symptoms.

It’s a useful post-surgical project. Computer based activities qualify as ‘taking it easy’. Apparently I’m supposed to be doing more of that.

My preliminary research, which I wrote about on the 26th of January, suggested that acetyl l carnitine might help. Having tried it for a week my symptoms became worse. The trouble is that there’s also research to suggest that regrowing damaged nerves in your hands and feet may include some short term pain to trying to decide if this supplement is working or not is problematic. Because I’m so close to my radiation therapy I’ve decided not to keep taking it. I want to make sure I’m not doing anything that might work against the radiation treatment and until I talk to my radiation oncologist, supplements are out.

Still, the research continues. In addition to what I found last time there’s a growing list of things that MIGHT help with peripheral neuropathy. The difficulty seems to be an absence of double blind trials into what works and what doesn’t. If you’re not currently undergoing chemotherapy or radiation, and your not in the lead up to surgery (because some supplements, like fish oil and ginkgo, thin your blood) then you might want to talk to you doctor about trying one of these:

Ginko Biloba

Magnesium

Zinc

Omega 3

B12

B6 (note that too much can CAUSE peripheral neuropathy)

Glutamate

Acetly l carnitine

All of these substances have some research behind them but none have a double blind human trial of sufficient size to declare any of them a cure. One of the complications with research is that peripheral neuropathy is caused  by a number of diseases, including diabetes and HIV, and what works for either of these may or may not work for chemotherapy induced peripheral neuropathy. For more information on any of the above substances, just google it with the words ‘peripheral neuropathy study’ after it.

I’d always much rather include food that’s a source of something beneficial than take a supplement. Time and again researchers find that there are things within micro nutrient rich foods that help us to utilise them. Recently New Scientist reported that the vitamin D our bodies manufacture as a result of sun exposure was better utilised than vitamin D in a pill.

At the risk of using a word so overused by management boffins that it’s almost become meaningless, micronutrients (vitamins and minerals) work synergistically with other substances in the foods where they naturally occur.

I remember there used to be a company that sold vitamin pill whose advertising always included the phrase “vitamin supplements may be useful when dietary intake is inadequate”. What a wonderful advertisement for eating well. Recently one of my doctors commented that Australians have the most expensive urine in the world. We swallow more supplements than any other population and most of it goes straight through us.

There’s a word you’ll usually see on the label of any bottle of supplements; ‘may’. As in, ‘may reduce the risk of macular degeneration’;’may promote heart function and prevent memory loss’;’may assist in peripheral circulation’ and so on.

Here’s my tip for reading anything that includes this word. Whenever you see it, add the phrase ‘or may not’.

‘May or may not assist in peripheral circulation.’

You can see the difference.

Eating well, on the other hand, is going to have all kinds of benefits for your body beyond the dubious benefits of a pill. Any time you think a supplement might be a good idea, just google the active ingredient and the words ‘food sources of’.

As an example, food sources of magnesium include dark green leafy vegetables, nuts and seeds, avocado and dark chocolate. Foods high in zinc include dark green leafy vegetables, nuts and seeds, avocado and dark chocolate. Oysters are your highest source of zinc. Yum. Foods high in omega 3 include fresh soy beans, walnuts, flax seeds and grass fed meat. (Yes, oil fish are in there too but I prefer not to eat them).

It’s not at all surprising to me that the same foods turn up, over and over again, as sources of micronutrients. It’s not difficult to get all of the vitamins and minerals you need if you eat well. If you’re going to absorb them well, you also need good gut health which is why I have probiotic drinking yoghurt every day. Once again, a food rather than a supplement.

There are times when supplements are useful. I did take vitamin D during chemotherapy because I wasn’t allowed in the sun. I have taken digestive enzymes in the past to alleviate reflux and heart burn. If your digestive system has been knocked about these are very useful for stabilising it.

There’s no food that contains Ginko Biloba because it’s a tree, which is why I plan on taking the supplement. I actually have a ginkgo tree in my garden but it seems it’s not safe to just eat the leaves because the quantity of the active ingredient/s seems to be highly variable.

Where I can’t fix something with healthy eating I’ll always consider a supplement, but I’ll also look at my diet first. It’s always going to better for me to eat more fruit and vegetables or add in some walnuts than to swallow a pill. It’s a lot cheaper too.

The other interesting bit of research I’ve found about peripheral neuropathy is about cannabis. This plant keeps turning up as a potential treatment for everything from multiple sclerosis to epilepsy. It’s been shown in vitro to kill triple negative breast cancer cells while leaving healthy cells alone and yes, I know that doing something in a petri dish is only a good start for further research, but it’s still a good start.

Here’s the link to the article I found about cannabis and peripheral neuropathy.

http://americannewsreport.com/nationalpainreport/vaporized-cannabis-reduces-neuropathy-pain-8818611.html

Here’s the abstract for the actual research, for those of you that prefer the source material to someone’s interpretation of it:

http://www.ncbi.nlm.nih.gov/pubmed/18403272

You can’t legally grow, sell, use or even give away cannabis in Australia so the benefits for me will remain hypothetical. It’s certainly more evidence that, in my opinion, we need to look at our laws in relation to medical cannabis if only to allow for double blind trials to determine its benefits. This plant MAY cure cancer (did you see what I did there?). 

If you live in a jurisdiction where you can legally use cannabis and you know of anyone successfully using it to treat peripheral neuropathy then please let me know. If you’ve used it illegally to do the same thing then you might want to consider posting under a fake name. I don’t think local police forces are particularly interested in arresting cancer patients but it’s always wise to be careful.

I know some people are shocked by my change in attitude to cannabis. After all, I used to be a police officer. It certainly took a lot more to convince me that a few Facebook memes. There’s a growing body of scientific evidence that supports the claims that cannabis cures a range of illnesses and helps with the management of others. In places where it’s used legally the results are compelling, particularly in relation to severe childhood epilepsy and pain management.

In New South Wales the government recently rejected calls for limited legalisation for people with HIV and terminal illnesses. Part of the justification was the fear that any legalisation would result in more cannabis being available and increased recreational drug abuse. How narrow minded. There is clear evidence that many people with serious illnesses are simply choosing to act illegally. Certainly, if faced with a situation where nothing else was working and a family member was dying, wouldn’t you try cannabis? If your child was having up to 100 seizures a day and you could see evidence of it helping children in other countries with the same condition, wouldn’t you be trying it?

Our government foolishly think that keeping cannabis illegal will limit recreational use of the drug. They have completely missed the elephant in the room; those whose only hope is cannabis are already using it. Current laws are not about whether or not seriously ill people will use cannabis, but the conditions under which they will use it.

I believe sick people should be able to try cannabis, discuss its use openly with their doctors, participate in research trials and grow or buy their own plants. We don’t ban steroids or pain medications because they are abused.

In the mean time, there are also a lot of people that won’t even consider trying cannabis because it is illegal, but they’re likely to be people that never had any intention of using it recreationally. They’re likely to be very sick people that don’t need the added stress of breaking the law and fearing arrest added to their already heavy burden.

And the recreational users? I’m guessing they already use it, and that there’s not a significant group of people waiting for the law to change so they can get high.

Regardless of your personal views on cannabis use, I hope you consider supporting its availability to seriously ill people, or at least consider supporting more clinical research into its benefits for seriously ill people. Given the results so far, I’ve decided that, in spite of my policing background, failing to extend this level of support is inhumane.

The other treatment that seems to relieve some people’s peripheral neuropathy is acupuncture. It’s also on my ‘worth trying’ list but just now I’m taking a break from having anything stuck into me. Chemotherapy involves a lot of needles. So do biopsies, clip insertions and surgery. Enough. I’d like to keep my outer surface intact for just a while, but I will consider acupuncture if the ginkgo doesn’t work.

I’m also going to keep up with all of the other practical things that assist in the management of peripheral neuropathy. Daily yoga, walking, a healthy diet, avoiding alcohol and epsom salt baths all help. If you have this condition then I’d highly recommend an accuball or something like it. Here’s the link:

http://www.acuball.com

These are great for helping to relieve pain and stimulate circulation. My daughter bought mine for me as a Christmas gift from Rebel Sport. I have the mini one, and it’s great because I can keep in my handbag and use it anywhere. I’ve also got a couple of ‘dryer balls’ which are meant to fluff up your towels. They’re a larger plastic ball with spikes all over it. Also great for giving myself hand and feet massages and they’re a lot cheaper than the accuball. Here’s a link to some on Amazon, but look around your local $2 shops and supermarkets first. We picked ours up for $2 from a stand selling gardening equipment in the local shopping centre.

http://www.amazon.com/Ontel-Dryer-Balls/dp/B004W7GNB2

Well, that’s about it for peripheral neuropathy so far. It’s certainly worthy of further medical research. I’ve found a number of posts on discussion boards from people that have been told by their doctors to just put up with it. It’s just not an option for me. Just about everything can be improved with good management. It’s also possible that time alone will heal it.

In the mean time I’m also going to eat more chocolate. That stuff’s good for you!

 

POST SCRIPT: Since writing this post I’ve had a double mastectomy and part of the treatment included a drug called ‘gabapentin’ to relieve associated nerve pain. As an unexpected side benefit it treated my peripheral neuropathy. I can taste food again. I am not waking up with my hands feeling like they’ve been slammed in a door. This is no small thing. My surgeon is excited because nobody has made this connection before. No telling it this works for other people or just for some, but it seems logical that something used to treat nerve pain would also work for a nerve related condition. If you have PN then it’s worth talking to your doctor about this drug.

I also read that evening primrose oil was used to treat peripheral neuropathy in people with diabetes. I tried it. It did seem to help. Unfortunately it increased the frequency and severity of my hot flushes. The trade off wasn’t worth it for me but you might still want to try it.

 

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