Many GBM patients have trouble either getting to sleep, or staying asleep. Even in spite of being so exhausted. For some, it’s thanks to the steroid dexamethasone (dex), which often has the side effect of making it difficult for people to sleep or sleep well.
However, many patients aren’t on dex past their surgeries and they still have trouble sleeping, sometimes – frequently. Which can be a real problem for someone recovering from cancer related damage to the brain. After all, the brain can only repair itself during deep sleep. So what’s a brain cancer patient to do?
My husband is no stranger to sleep issues. Every time I talk to the oncology team about his difficulty staying asleep though, they tell me they don’t want to give him anything that will mask symptoms. And I get it. Taking any kind of sleep medication could cause a patient to sleep through symptoms that might require an ER, or might skew the way a person experiences symptoms.
Thankfully, there are a few things even a mainstream oncologist will recommend. And they happen to be over-the-counter supplements. Namely, Melatonin and L-Tryptophan. (Melatonin also more recently showed potential to slow tumor growth in certain breast cancers.) Don’t take my word for it. Go ask your oncologist! There are several supplements and herbs that you may be able to add to your fight, just be sure to talk to your doctor first so you don’t interfere with the effectiveness of your treatment.
John and I have been using melatonin for nearly 20 years, so we have a lot of experience with it. However, I personally found that I reached a tolerance level over the years. And today I have to be careful with how often or much I use it, or I can’t stay asleep all night. I think its effectiveness for me personally is sometimes related to how stressed my immune system is.
Melatonin is processed through the liver, as are other medications our glioblastoma warriors are also taking. John’s been on various doses of melatonin, as high as 20mg per night. Right now we are alternating 3 days at 10mg and 3 days at 5mg.
Melatonin has a relationship with serotonin, and it’s been found that melatonin supplementation can increase serotonin levels too. serotonin is also important in regulating sleep (and mood). And L-tryptophan also plays a role in both improving quality of sleep and balanced serotonin levels.
Melatonin is also greatly affected by light and UV light. Exposure to light, especially through the eyes, destroys melatonin. If you are keeping lights on at night, it’s counter-productive because it’s destroying both naturally produced melatonin as well at the supplemented melatonin. If a night-light is necessary, use a red Christmas bulb instead and stay away from the blue spectrum of lights. Also, dimming lights at night helps. Dim them at least an hour before bed, along with maintaining a rule of no computers/phones/tablets, etc. for at least an hour before sleep.
As an extra resource, I personally find an app called F.lux very helpful in maintaining this habit of reducing my computer time before bed. F.Lux is designed to mimic the phases of sundown, in reducing the blue spectrum of light in your computer screen. It’s a free app and you can find it here: https://justgetflux.com.
The thing to know about melatonin is that once your body has tolerated so much, it can actually keep you awake. Melatonin doesn’t actually make you sleepy as much as it improves the quality of deep sleep. If you aren’t using melatonin, give it a try (with your doctor’s OK) and see if that helps. If you are already using melatonin and are having trouble sleeping, try switching to a time-release version, or lowering the dose. (Always tell your doctor what you are doing!) For myself, I use the liquid form. It’s easier to control the dosage at lower levels with it.
Aside from using melatonin to help a glioblastoma patient sleep, it may also help fight cancer. Before the standard treatment for glioblastoma was adopted, the mean survival time for a GBM patient was only 6 months, even with treatment. However, in 1996 a study was done that showed that melatonin combined with radiation had the potential to extend lives further than that. So there’s plenty reason to talk to your doctor and consider giving melatonin a try.
I hope you find this helpful! If you do decide to give melatonin a try (with your doctor’s OK), don’t be afraid to try out different doses and brands. You may find one works better for your body than another.
And if the doctor OKs it, you might also try adding L-tryptophan. If you don’t want to use supplements, you can always go to whole food route. We all know that turkey has l-tryptophan, but Spirulina, chia seeds and flax seeds all contain higher doses of l-tryptophan than just turkey alone. There’s a pretty good article on food sources for l-tryptophan here: http://plenteousveg.com/tryptophan-foods.
Do you have experience with using l-tryptophan and/or melatonin with glioblastoma? Help other GBM patients and share your knowledge in the comments below!