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Tom Galli

Insomnia and Lung Cancer

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Sleep!

I am fortunate, very fortunate, to be a long tenured lung cancer survivor.  There is however, a nightly battle, a cyclic war, a nocturnal struggle that holds vast consequences - falling asleep.

As a young man I could sleep anywhere.  As a soldier, I learned to sleep whenever possible and got quite good at it.  As a lung cancer survivor, sleep deserted me; what was once easy, requiring no thought, has become difficult in the extreme.  Why?

There are a multitude of reasons and all of them are related to my lung cancer treatment.  All huddle under the general heading of chronic pain that is just painful enough to remind me of its presence.  Well, having said that, there is one minor exemption - muscle cramping but that causes pain so it can huddle-up with the chronic stuff.

Sleeping is one of those inconsequential topics that only becomes interesting when one survives the disease long enough to become sleep deprived.  Then it acquires overwhelming importance.  After living 12 years after diagnosis, and despite the best efforts of my doctors and care of my long suffering wife, I manage to sleep but 6 days in 10.  I did a little googling and found this problem is more common that I once though.  The National Institute of Health has funded a University of Buffalo nurse to conduct a study to determine how to improve lung cancer insomnia.  Her idea is to use cognitive therapy and you can read about it here - http://www.buffalo.edu/news/releases/2013/12/008.html

I'll be very interested in its outcome.  How have I attacked my insomnia problem?  My GP started me on Benadryl, an antihistamine, that also is the primary ingredient in over the counter sleep medication.  Then came prescription sleep medications (Ambien and Lunesta).  Ambien worked for a short time but there were some nasty consequences - several scary zombie-like sleep walk sessions! I took exactly one dose of Lunesta and ended up in the emergency room displaying symptoms of anaphylactic shock.  

Here are things that work for me.  We purchased a high-density foam mattress and an electrically adjustable bed.  This elevates my upper body transferring weight away from my chest incision site - one of my chronic pain areas. I also wear wool-lined Ugg slippers to bed every evening.  These act as "toe guards", keeping the weight of bed covers off of my feet, thus keeping Taxol toes in check. Wool is a superb cushioning material and I wear wool-lined shoes (also from Ugg) and wool socks to minimize foot pain while walking.  My GP prescribed Xanax, initially .5mg, to be taken about 1/2 hour before bed.  After 10 years, my nightly dose is 1mg and occasionally I add another .5mg when 1mg doesn't work.  Xanax makes me drowsy, often just drowsy enough to forget about my chronic pain symptoms.  It it doesn't work, then I experience a calm night of insomnia.  I have a wide assortment of narcotic pain medication to choose from but I really don't sleep on narcotics and I'm often in a narcotic haze the next day incapable of meaningful activity.

I hope you all are successful in your treatment to get to a point where you can complain about sleep.....  

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Hi Tom,

 

This is a post that I read with interest as I haven't slept well in nearly two years. I haven't been disgnosed with anything yet, apart from early morning 3am wakening.  Why that is we don't know.  I suspect that it is related to cortisol misbehaving.  I get off to sleep no problem as I am so tired, but come 3:40 am (give or take 5 mins) I am awake and clock watching until I have to get up ready for a days work.  I have completed cognitive behavioral therapy and this did not work for me.  The psychologist suspects something physical is underlying.  My doctor suspects something psychological.  I just want some decent sleep.  I have been prescribed Trazodone, when I woke up early in the morning I could hear marching band music, better than zombie sleep walking sessions I guess.  I also tried Mirtazapine and Duloxetine with no effect.  Like you, I could sleep anywhere when I was in the military, even getting a good sleep in the back of a C130 Hercules Transporter.  What maybe keeps me up is worry.  My cortisol is high and is known as the anti-sleep hormone. My worry is that I am missing something as the doctor who tested my cortisol as high is the same doctor that is prescribing the sleeping pills.  Now I don't think medical school teaches you to ignore the obvious, so when I suggest that just maybe that cortisol is one factor to consider I get told that it is dangerous for me to look on the internet, I can't help but think that I am not only having trouble sleeping but also struggling to interpret simple text from reliable web sites.

 

Thanks for posting your experience, if I find a cure for me, I'll be sure to post it.

 

God night I'm off to try and reach the land of nod.

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On 4/12/2016 at 3:49 PM, Tom Galli said:

Sleep!

I am fortunate, very fortunate, to be a long tenured lung cancer survivor.  There is however, a nightly battle, a cyclic war, a nocturnal struggle that holds vast consequences - falling asleep.

As a young man I could sleep anywhere.  As a soldier, I learned to sleep whenever possible and got quite good at it.  As a lung cancer survivor, sleep deserted me; what was once easy, requiring no thought, has become difficult in the extreme.  Why?

There are a multitude of reasons and all of them are related to my lung cancer treatment.  All huddle under the general heading of chronic pain that is just painful enough to remind me of its presence.  Well, having said that, there is one minor exemption - muscle cramping but that causes pain so it can huddle-up with the chronic stuff.

Sleeping is one of those inconsequential topics that only becomes interesting when one survives the disease long enough to become sleep deprived.  Then it acquires overwhelming importance.  After living 12 years after diagnosis, and despite the best efforts of my doctors and care of my long suffering wife, I manage to sleep but 6 days in 10.  I did a little googling and found this problem is more common that I once though.  The National Institute of Health has funded a University of Buffalo nurse to conduct a study to determine how to improve lung cancer insomnia.  Her idea is to use cognitive therapy and you can read about it here - http://www.buffalo.edu/news/releases/2013/12/008.html

I'll be very interested in its outcome.  How have I attacked my insomnia problem?  My GP started me on Benadryl, an antihistamine, that also is the primary ingredient in over the counter sleep medication.  Then came prescription sleep medications (Ambien and Lunesta).  Ambien worked for a short time but there were some nasty consequences - several scary zombie-like sleep walk sessions! I took exactly one dose of Lunesta and ended up in the emergency room displaying symptoms of anaphylactic shock.  

Here are things that work for me.  We purchased a high-density foam mattress and an electrically adjustable bed.  This elevates my upper body transferring weight away from my chest incision site - one of my chronic pain areas. I also wear wool-lined Ugg slippers to bed every evening.  These act as "toe guards", keeping the weight of bed covers off of my feet, thus keeping Taxol toes in check. Wool is a superb cushioning material and I wear wool-lined shoes (also from Ugg) and wool socks to minimize foot pain while walking.  My GP prescribed Xanax, initially .5mg, to be taken about 1/2 hour before bed.  After 10 years, my nightly dose is 1mg and occasionally I add another .5mg when 1mg doesn't work.  Xanax makes me drowsy, often just drowsy enough to forget about my chronic pain symptoms.  It it doesn't work, then I experience a calm night of insomnia.  I have a wide assortment of narcotic pain medication to choose from but I really don't sleep on narcotics and I'm often in a narcotic haze the next day incapable of meaningful activity.

I hope you all are successful in your treatment to get to a point where you can complain about sleep.....  

Hi Tom 

Prowling around former posts & came across this.  I have been getting night sweats which we believe is a side effect from the Alectinib.  For now we’ve just added extra acupuncture needles.  

What is interesting about your post is the Ugg slippers.  Since hubby had his surgery last month his Urologist urged him to keep the bed covers off his toes to prevent leg cramps.   We’ve tried a couple of things & nothing works. 

What type of Uggs did/do you use?  Hubby wants to know if they wore the sheets out?  

I figure the topic is still relevant so thought I should post for everyone else in our group.  

Thanks! 

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Michelle,

I use an Ugg men's Ascot Slipper and it doesn't harm the bedding at all.  I've used them for almost 14 years now and it really minimizes the weight of bedding on my burning toes.  I only wear them in bed.  I transition to L L Bean leather wool lined moccasins with a leather sole around the house.  I find wool to be very helpful guarding the sensations on my toes.

Stay the course.

Tom 

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