Chemo Brain And How To Treat It

My brain is back.

It’s like the sun coming out after a week of rain. Except it’s been raining for over two years. The return of my full cognitive function hasn’t been as sudden as a change in the weather, but the impact on my mood has been as dramatic.

It’s like discovering I’ve been living in just one room and that my home has three storeys. It’s like discovering I’ve been driving around in first gear and my car has five gears. With hindsight, I realise how badly my cognitive functioning was effected by treatment, although living through it I probably wasn’t cognisant of how impaired I really was (and this might be one of the few benefits of chemo brain).

I know this condition has a huge impact on the quality of life of so many survivors, so I thought I’d share my best advice for recovery.

First of all, understand that as far as researchers have been able to determine, it’s not exclusively caused by chemotherapy. While we all call it ‘chemo brain’ or ‘chemo fog’ the correct description is ‘mild cognitive impairment following cancer treatment’.

The causes haven’t been clearly identified but it’s a real condition, and it can be picked up with imaging technology. In one study, breast cancer survivors not only required a larger area of their brain to respond to a question, they used more energy to do so. In another, the resting metabolic rate of the brain was slower.

So the first bit of good news is you’re not imagining things. That inability to remember your phone number, the name on the tip of your tongue or the misspoken phrase are all manifestations of ‘chemo brain’. So is a general feeling of fogginess, mental sluggishness and difficulty learning anything new.

Coping with it usually involves implementing the kind of strategies they give people with early dementia; keep lists; use a calendar and a notebook; have one spot where you always put the things you lose regularly. All of this helps but what we really want is an effective way to hasten our recovery.

The really good news is that recovery is not only possible, most people find it relatively easy to achieve.

Apart from physical damage caused by treatment, chemo brain might also be caused by a range of other factors. The main suspect is anxiety, which can cause cognitive impairment all on its own. Hands up anyone that managed to get through cancer without feeling anxious. Depression is also a common after effect of treatment and yes, it’s also characterised by brain fog. If you suspect you’ve got ongoing issues with either anxiety or depression it’s important to discuss this with your doctor.

Vitamin D deficiency could also play a part because most of us had to avoid the sunshine for several months due to either chemotherapy or radiation. If you didn’t take your vitamin D supplements and treatment just got you out of the habit of sitting in the sun then an improvement could be as close as eating breakfast outside every day. Special note here to avoid supplements with calcium in them because they’ve been shown to be a health risk and to favour sun over supplements when you can because the type of vitamin D your body manufactures in response to sunlight is more beneficial.

If you’re experiencing serious mental impairment it’s also worth asking your doctor to give you a simple cognitive test to rule out dementia or any other illness that might be impacting your cognitive function. Don’t just assume it’s a result of treatment.

Having discussed chemo brain with a number of survivors there’s now been several that have overcome their problems by dealing with anxiety, depression or vitamin D deficiency so consider those first. Once you’ve ruled out other causes there’s still plenty you can do to reclaim your brain.

Here’s my top six recommendations for treating chemo brain. Many of these are things we should all be doing to improve our health and boost our immune system so adding them into your daily routine should bring a whole lot of benefits.

Please treat this list as a menu rather than a prescription. Choose what appeals to you and try it for a few months before you rule it out. And please share any other ideas you have about this condition.

  1. Fasting (aka The Fast Diet or 5:2 calorie restricted eating)
    What it is: an eating strategy where you limit your calories to 500 on two days each week.
    Why it might help: Fasting triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Even people that haven’t been through cancer treatment regularly report improved mental clarity when they adopt this way of eating.
    My experience: My cognitive function had been improving over time since I finished treatment but my biggest step forward coincided with switching to this way of eating. Of course it’s possible that this shift was coincidental so I’d be very interested to hear from anyone else that tries 5:2 or some other fasting regime and notices a brain boost. There are lots of good reasons for cancer survivors to consider fasting in any case.
  2. Yoga (Seriously, what isn’t yoga good for?)
    What it is: an ancient practice that links physical exercise with breathing and mindfulness
    Why it might help: Research shows that yoga has a profound effect on our physiology, including our cognitive function and our ability to deal with anxiety. Some of the benefits are undoubtedly associated with the increase of oxygen to the brain but yoga has such significant benefits over other forms of exercise that it’s clear they’re only scratching the surface of what’s going on inside us when we practice it.
    My experience: I’ve written before about the profound impact yoga has had on my ability to deal with treatment and my recovery. The benefits have ranged from helping me to deal with anxiety and pain to preventing nausea. Yoga helped me to restore my energy when treatment drained it and played a big part in my recovery from surgery thanks to my physical strength and flexibility.
    If you don’t find yoga appealing then exercise will also help you to recover your brain. I just don’t think it will achieve this as quickly or as well as yoga.
  3. Mindfulness
    What it is: a practice of focusing on the present moment and doing one thing at a time. Some people use meditation to learn mindfulness and others learn it by just focusing on whatever they are doing right now.
    I use both. Mindfulness for me includes listening to recorded meditations on my iPod and paying close attention to whatever I’m doing during the day. Even the washing up can be a meditation.
    Why it might help: Mindfulness trains your brain to still the ‘monkey mind’ that jumps from one thing to another. It also helps to reduce anxiety which might be a major contributor to cognitive impairment.
    My experience: Mindfulness has helped me to stay calm and to be present. My mind functions better when it’s calm.
  4. What you put in your mouth
    What it is: Attention to good nutrition, good hydration and avoiding those things you know aren’t good for you.
    Why it might help: Food and water are fuel for our bodies and the functioning of our bodies is directly linked to the quality of that fuel. We know that children show huge cognitive improvement when their diet is improved and that it also has an impact on mood and behaviour. Recent research into the addition of fresh vegetables into the diets of older people also demonstrated improved cognitive function. We are what we eat.Water is also critical to healthy brains. I noticed in hospital that my low blood pressure was immediately remedied by drinking a glass of water and our brains rely upon a good blood supply to function.

    Avoiding those things we know are unhealthy, including alcohol, highly processed food and high sugar food will also have an impact on our brains. People with allergies and food sensitivities will know that a small change in diet can mean a big improvement in health.

    My experience: My diet was pretty good before I was diagnosed. It’s even better now. I’ve significantly reduced all of those things I know are unhealthy while still allowing for the occasional treat. We predominantly eat organic food and I cook from scratch. I’ve cut right back on gluten after I noticed (thanks to The Fast Diet) that it made me tired and bloated. I still need to work on drinking enough water every day but I’ve improved on that score too. It comes as no surprise to me that the better I eat, the better I feel.

  5. Iodine Supplements
    Regular followers will know that I’d rather get my nutrition from food than supplements but based on my own research and an examination of my diet I determined that there was a possibility that I was iodine deficient. I don’t eat a lot of fish and while dairy used to be a good source of iodine, changes in farming practices mean it’s no longer used. The clearing of the fog has coincided with the introduction of iodine into my diet so it’s worth considering. Please let me know if you have similar results. As always, I strongly recommend you discuss any supplementation with your medical team, particularly if you’re in active treatment.
  6. Sleep
    Sleep is the great healer. When I was in treatment it was common for me to sleep in excess of ten hours a day. As my health has improved my need for sleep has declined but I still regularly get eight hours. Sleep is such an important part of recovery that I’m dedicating all of my next blog post to it.

Here are some other things you might like to try:

  1. Learning a language or a musical instrument
    If you’ve read any of the recent research into neural plasticity you’ll already know about this one. It’s long been thought that the only time when the brain was ‘plastic’ and able to create new neural pathways was during early childhood. Now it’s clear that we can keep building new connections in our brain for the whole of our lives. The quickest and most effective way to do this is to learn something new. Languages and music are particularly good, but learning anything new will help. A number of people have told me they’re finding ‘luminosity’ (a web site that charges you a monthly fee to play ‘brain training’ games) very helpful. You could also try puzzle books or free online puzzle sites.
  2. Get creative
    Creative pursuits are good for your brain and your mood. Pick something you really enjoy and dedicate a bit more time to it. It might be gardening or scrapbooking or making furniture out of scrap wood. It really doesn’t matter what you choose as long as it gets you making lots of happy choices. There’s a huge surge in the popularity of colouring in books for adults at the moment. I wish these had been around when I had chemo. They’re very relaxing and great fun, combining creativity with mindfulness.
  3. Take a holiday
    A break from your usual routine can be good for your brain. It doesn’t need to be expensive or involve air travel. It might just be a weekend visiting a good friend. The aim here is to find something restful and calming. If the thought of packing a bag and going anywhere makes you anxious then stay home.
  4. Have a cuddle
    Not that anyone needs an excuse, but cuddles are good for your brain. They increase oxytocin levels and this helps you to feel calmer and happier. You can cuddle a person or a pet. You can cuddle a partner a friend or a child.
  5. Have a massage
    It’s a combination of cuddling, mindfulness and increasing oxygenation. It’s the triple whammy of treatments when it comes to helping you restore cognitive function. You can also credit it with reducing anxiety, giving you a break from your routine and helping you to feel good about your body. There are now massage therapists that specialise in treating people going through or recovering from cancer treatment, so look up ‘oncology massage’ and treat this as a necessary part of your recovery (rather than an occasional treat).

Finally, don’t give up. There’s no upper limit to how well we can be. Recovery from chemo brain is certainly possible and most of the things that help us to achieve it are things we should probably be doing anyway.

A Warning About Calcium and Vitamin D Supplements

IMPORTANT HEALTH WARNING: New Scientist for the 30th of August 2014 has a great article about the current scientific research into vitamin and mineral supplements. It’s no surprise that most of them are useless. Vitamin D and Fish Oil get the tick but if you’re like a lot of post menopausal woman and taking a vitamin D supplement that includes calcium then please read this:

“Too much calcium from supplements can cause kidney stones. But of graver concern are risks to the heart. A five year trial of post menopausal women found that those taking the supplements were more likely to suffer a heart attack or a stroke than those who didn’t. A subsequent analysis confirmed the increased risk. As a result of such studies, medical advice is changing. Last year the US Preventative Services Task Force changed its guidance to recommend against the combination of calcium and vitamin D supplements for post menopausal women.”

So if you’re vitamin D deficient take a supplement that doesn’t contain calcium (in Australia, Blackmores make one) or better still, try to get the recommended amount of sunshine on bare skin for your location. New Scientist also published research about a year ago that established the superiority of sunshine over supplements.

This is particularly important for anyone facing chemotherapy. Oncologists typically (and sensibly) recommend a vitamin D supplement because we need to avoid direct sunlight during chemo. Many of the commercially available supplements, like ‘Caltrate’  contain calcium. Check to make sure you’re not taking something that might compromise your health.

I’m a big fan of A2 milk and get plenty of calcium in my diet. If you’re not a milk drinker then google ‘food sources of calcium’ to make sure you’re eating enough.

 

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.