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#147853 - 04/06/12 09:05 AM Sleep - lack of
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
How does one deal when cannot get enough sleep? I have noticed I will get up 3 - 5 times during the night to read adjust my self or go to bathroom.

_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

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#147856 - 04/06/12 12:33 PM Re: Sleep - lack of [Re: BuffaloFan]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Oh the joys of insomnia...I know them well. I spent the better part of the last four years struggling with it, even after getting off the opiate pain meds, which notoriously cause insomnia. They actually activate areas of the brain that keep you awake so after you've developed a tolerance to them this is a common effect.

When I think back on my treatment days the sleep deprivation was probably the leading cause of my insanity, it was horrible. My Dr's tried it all too, low dose tricyclic antidepressants, benzodiazepines, Ambien/Lunesta, the works...and where I didn't find restful sleep I did have fun with the side effects of those drugs. My wife's stories of my Ambien/Lunesta sleepwalking experiences both crack me up and scare the hell out of me. Everything from running around outside in the harsh N.Idaho winters, in my pajamas, hunting ninjas on the roof (apparently sent by the government to kill me) to putting my wife in a choke hold, which is scary as I'm a lifelong wrestler and have studied/love ju-jitsu.

Medicinal Marijuana has been prescribed for insomnia (vaporized or injested, never smoked!) with good feedback from patients. My past experience with this I'll share that it did work very well for me in this area without the harsh and potential psychotic side effects of the other drugs listed above. There are side effects however that can be rather harsh, like your kids whining that you ate all of their Doritos, my wife slapping me for finishing off the Dove Chocolate bars she hides in the Freezer to appease her viscous addiction, or probably the worst...I had the hardest time fitting into my skinny jeans that really accented my posterior. Oh what we subject ourselves to due to cancer...

Anyway BuffaloFan, I hope you find something that works for you and eases your pain and brings you comfort, lord knows your football team hasn't been up to the task...says the Seattle Seahawks fan smile

Hope that helps!

Eric





Edited by EricS (04/06/12 12:52 PM)
Edit Reason: always spelling
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#147864 - 04/06/12 05:21 PM Re: Sleep - lack of [Re: EricS]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9158
Loc: PA
Sorry to hear you have insomnia. I ended up taking a prescription sleeping pill on some nights where I couldnt sleep. Check with your doc if they can prescribe something that you can take occasionally. I would also wait to take the benedryl for my sinus issues until close to bedtime. Ive finished chemo/rads Sept 2007 and I still cant sleep right at night. Of course everybody is different and most wont have long lasting sleep problems. I just have too much on my mind to spend much time sleeping.



_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147868 - 04/06/12 05:34 PM Re: Sleep - lack of [Re: ChristineB]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
Saw LNP today when I went for my first treatment. She recommend taking some benadryl before bed and this would help keep me a sleep. She also recommend not drinking water close, and if getting dry mouth take a sip not a gulp.
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147872 - 04/06/12 05:44 PM Re: Sleep - lack of [Re: BuffaloFan]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9158
Loc: PA
You can also try some of the Biotene line of products. There is a mouth gel that helps keep your mouth moist.

Try sleeping with a humidifier. The extra moisture in the room can be a big help. Plus the sound of it can help to lull you to sleep.

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147874 - 04/06/12 05:48 PM Re: Sleep - lack of [Re: ChristineB]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
Originally Posted By: ChristineB
Try sleeping with a humidifier. The extra moisture in the room can be a big help. Plus the sound of it can help to lull you to sleep.



I sleep with one and does not help with the sleep. Thanks for the suggestions. I think what I need right now is a big teddy bear
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147877 - 04/06/12 08:07 PM Re: Sleep - lack of [Re: BuffaloFan]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 942
Loc: Ohio
I don't think there any one magic cure for insomnia - sometimes trying several things may help. Other stuff to try -
don't 'try' to sleep - just say I will rest and relax
meditative breathing - concentrating on following your breath in and out.
dvd's - movies you have already seen, but that are soothing to watch.
The teddy bear (or a nice memory foam pillow) isn't a bad idea
My neurologist friend recommends a lavender pillow to help with stress reduction. Now, I know that sounds wacky for a football fan, but seriously, why not give it a try.


Edited by Maria (04/06/12 08:16 PM)
Edit Reason: lavender
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147878 - 04/06/12 08:30 PM Re: Sleep - lack of [Re: Maria]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
One thought. Benadryl is used for allergies and to dry up the mucus/ runny nose as well as itchy watery eyes. Where there is already dry mouth potential, that would not be a good choice. Just my opinion!! Might want to try the Lunesta or Ambien instead, or just some good old Tylenol PM. You could also try Melatonin.
But really, the Benadryl dries me out terrible and I don't have dry mouth.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147952 - 04/08/12 11:12 AM Re: Sleep - lack of [Re: BuffaloFan]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
I actually got 6 hours straight sleep with no meds!!!!!!!!
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147956 - 04/08/12 12:33 PM Re: Sleep - lack of [Re: BuffaloFan]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
BuffaloFan - Fantastic! Do the happy dance! I know the feeling. Last time I had 6 hours straight sleep I was on vacation in Mexico.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147957 - 04/08/12 01:23 PM Re: Sleep - lack of [Re: Anne-Marie]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
I changed my nightly habit last night.
Treated myself to a movie (ALONE frown ) and was asleep by 12
_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Top
#147994 - 04/09/12 01:27 AM Re: Sleep - lack of [Re: BuffaloFan]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
What movie was it? I'll have to get it next time I can't sleep.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147996 - 04/09/12 02:14 AM Re: Sleep - lack of [Re: Anne-Marie]
Marly Offline
Contributing Member (25+ posts)

Registered: 03/31/12
Posts: 37
Loc: Rocky Point New York
Warm milk always helps me sleep.. smile
_________________________
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo.
1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. smile

My Motto since my diagnoses- It's All In The Attitude!!!

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#148278 - 04/14/12 08:58 PM Re: Sleep - lack of [Re: Marly]
emilyp Offline
Senior Member (100+ posts)

Registered: 12/09/11
Posts: 122
Loc: New Orleans, LA
I have been suffering from insomia as well - it has always been a problem for me, but in the past it was an occasional occurrence and ambien would work. Now, nothing seems to work! I am prescribed to both Ambien and Lunesta, but neither seem to keep me asleep. I have contemplated taking both at the same time, but am not sure of the side effects. Good luck to you, and let me know if you find anything that helps!
_________________________
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011

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#148282 - 04/14/12 10:21 PM Re: Sleep - lack of [Re: emilyp]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Hi Emily

Ambien is designed to help you fall asleep - not stay asleep unless you have the slow release version. I am not familiar with Lunesta.

Please tell your doctor that they are not working, and he or she may prescribe something else.

Unless your doctor has advised they can be taken together, you run the risk of added side effects (and essentially overdosing yourself) without any addition in therapeutic benefit. You can also develop tolerance to these drugs which means that your body gets used to the drug and requires more and more of it to have an effect. For this reason, they are prescribed for short term problems and should not be taken over extended periods of time
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#148384 - 04/17/12 12:36 AM Re: Sleep - lack of [Re: Anne-Marie]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
WOW and I tyhought 2 1/2 hrs solid was good. Yours sounds much better.This trach keeps one awake suctioning it out. No more tho. I just posted
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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