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Old 06-12-2008, 10:08 PM   #1
kcherub
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Angry Help me SLEEP!!!

Okay...I had been taking Ativan (very small dosage) to sleep every night since (oh, I don't know) last May. That's 2007, people. I began thinking that I should come off of it (liver concerns and the fact that I abhorred any medications before all this crap). I took Tylenol PM a couple of times, and tried Benadryl. They both worked like a charm, but I wasn't sure how safe they were to take on a regular basis as well.

I have tried Rozerem (just twice). Hate it! I take it, and four hours later, I am awake, sweating like crazy, and trying to wrap my mind around the freaky dreams I just had! I can't say for sure that the sweating isn't caused by Tamoxifen, but I don't have it very often. Other than the Rozerem nights and the occasional, "Todd, turn on the AC!"

Anyhoo, now I am reading that there are tons of things you should NOT take with Tamoxifen (ADs, Benadryl, Tylenol PM--it has Benadryl or something like it) because they can interfere with Tamoxifen and might make it obsolete. I curse the Tamoxifen every time I take it, so I don't want to do anything that makes it not work as effectively!!! I even returned a bunch of Mary Kay stuff because of all the parabens. I am getting hardcore, eh?

So, can anyone offer any suggestions? I am becoming a grumpy butt, although you wouldn't know it by my pasted-on, Barbie doll smile in the new photo. LOL

Take care,
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 06-12-2008, 10:20 PM   #2
hutchibk
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Hi Krista - I am very sensitive to most drugs, so I was not very excited at the thought of taking a sleep aid, until my chemo started causing me to be totally sleep deprived. My doc had me try Ambien and it was NOT FOR ME! I was hung over for 2 days after taking it. Then he asked me to try the lowest dose of Lunesta, and OMG, I love it! I take it only when I need it and never more that 3x a week. And I never take it more than 2 nights in row.... just because I am a light weight. But, when I take it, I sleep like a baby for 8-9 hours and wake up straight away in the AM, totally refreshed and bright eyed and bushy tailed. I know not everyone has the same experience with every sleep aid, but I love my Lunesta...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-12-2008, 11:43 PM   #3
Linda
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Dear Krista:
I went through the same thing, after taking a very small (.5) dose of Ativan nightly during my six months of chemo. It's really addictive and it will take a little time to sleep well without it. I stopped when .5 no longer worked and I knew I had to increase the dose or go cold turkey.
Try cutting down gradually -- use a pill cutter and cut that tiny dose in half, then go every other night, etc. And just expect that it's going to take your body two to three weeks (sorry) to readjust and sleep naturally. You have to go through a kind of withdrawal (insomnia) but it won't take that long.
Good luck. This is a common problem at the end of treatment.
Best
Linda
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Old 06-13-2008, 12:07 AM   #4
Chelee
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Krista, There is nothing worse then not being able to sleep. I went through about a year of that myself...what a nightmare! I tried the xanax, ativan, Rozerem, Ambien. I think Ambien was the worse...it didn't do a thing for me. The Rozerem was awful and it gave me a terrible headache. (Never again!)

I tried other things and finally my doctor gave me Restoril. He said they give that to people in the hospital. All I know is that finally worked. Everyone is different so you have to keep trying meds to see which one works for you. Restoril has been around a long time & works wonders for me. Once I broke the cycle of not sleeping with the Restoril I went off of it and now have no trouble sleeping. Just keep after you doctor till you find what works for you. Hang in there.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 06-13-2008, 03:16 AM   #5
GemmaG
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Hi,
Lunesta! You'll love it.
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My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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Old 06-13-2008, 03:25 AM   #6
Sheila
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I know how you feel...it is 5:30 am in Illinois and I am still awake from last night....the Decadron I got yesterday is still keeping me going. I took Advil pm...no help, I hate the effects of Ambien so I just watched more news than I ever wanted to see...I am going to ask for Lunesta and try it!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-13-2008, 06:15 AM   #7
kcherub
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Thanks, ladies! I will come up with a plan and see what will work. I just hate lying there, knowing that I either have to get up and go to work or take care of Cooper the next day.

The older you get, the more you begin to understand how important sleep is!

Take care,
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 06-13-2008, 08:17 AM   #8
sarah
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Do you take the tamoxifen at night? if not, maybe try that.
also make sure in the daytime you do some tiring physical activity.
all the best.
sarah
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Old 06-13-2008, 11:04 AM   #9
kcherub
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Sarah,

Hey! Yes, I take my Tamoxifen just before I get into bed. When I was on birth control (years and years and years ago), it made me queasy. My ONC. said that if that made me queasy, the Tamoxifen might as well (when I was having a bit of nausea about a month after starting it)...

Take care!
Krista
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 06-13-2008, 12:01 PM   #10
Mary Jo
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Hi Krista,

Just wanted to say that I love your new picture. Very pretty.

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 06-13-2008, 03:00 PM   #11
R.B.
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Kcherub,

There is some evidence and some reasonable argument that balancing your omega 3s and 6s / ensuring an adequate supply of long chain Omega 3 in the form of fish oil may help with sleep.

There is a chapter on the subject in my book, which is to an extent is original thought. This is the index to the chapter. The conclusion is as above. http://omegasixthedevilsfat.com/ch27.aspx

Balancing the omega 3s and 6s and ensuring a supply of long chain omega 3s my also have a number of other benefits

http://her2support.org/vbulletin/sho...ght=greek+diet

Please discuss dietary change with your doctor and more so during treatment.
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Old 06-13-2008, 05:57 PM   #12
Bill
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Hi Krista, nice new pic. Ambien works quickly, but only for 4 hours or so. With Lunesta, it's slower to kick in, but helps you to sleep longer. I have Ambien here, which I take once a week or so, and often use a pill-cutter. I'm almost always sleep-deprived, so I often just take a half-dose if I have to get up in 5 hours. Ambien CR is another option, but you can't cut them. Maybe try some melatonin. I got some at the pharmacy, and it worked well for me. It's naturally made by the body, and I would advise trying it also. Like others have said, everyone is different. Diet and eating habits play a big role in sleep as well. I know alot of medications cause insomnia, I know all about decadron/dexamethazone, but maybe other meds. you are taking could be taken at different times if they could be causing a problem. Might not pertain to you, but a good family friend, age 68, non-smoker, very light drinker, was having trouble sleeping for quite awhile. He went to his doc. and after some discussion, became nearly vegetarian and began practicing yoga and know has no trouble sleeping. He's not on any medications, though. About 3 months ago, I quit eating animal proteins and fats during the day and my energy level shot up big-time (sorry I'm rambling, just trying to throw out ideas) If I eat mostly salads and salmon at night now, and some chicken. I've found that if I eat heavy protein at night, I have a harder time getting up the next day. Good luck, sweetie, please keep us posted
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Old 06-13-2008, 07:07 PM   #13
fauxgypsy
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I had just the opposite reactions to Ambien and Lunesta. Ambien helped me sleep for at least 8 hours but I felt drugged. Lunesta helps me get to sleep but I often wake up about 4 hours later. With the Lunesta, I wake up with a bitter taste in my mouth that lingers for several hours. Still, it is better than feeling drugged. I have fibromyalgia and it will flare up if I don't get enough sleep. I have weeks sometimes where I don't think that I would sleep at all if I didn't take something. I try to take it only when I need it, but there are some nights I lay there for what seems like hours until I finally give up and take the Lunesta. Cutting back on my caffeine intake helped as well. I have been making my tea half reg., half decaf. I drink a lot of iced tea.

When I was getting chemo and decadron, there were some nights I didn't sleep at all. Surprisingly enough , there was usually someone else up on this forum as well. I finally just accepted it and found something to do that would distract me. The last week or so I have been taking Edahist and Diphyllin GG for a cold and sometimes I fall asleep by eight. It is not a permanent fix but I'll enjoy it while it lasts. Good luck.
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 06-14-2008, 11:25 AM   #14
ElaineM
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Wink Help me sleep

Hi,
Sorry to hear you are not sleeping well. We need that.
I have never any of the things the other people suggested.
I stop eating 3-4 hours before bed time. It helps to have a little quiet time without the T. V., radio, and other noise. Sometimes a warm bath or shower before bed helps. It helps to sleep in a dark quiet room that not subject to noise in your home. I take my daily medicines that have warnings about making me drowsy before bed time instead of in the morning or during the day. I try not to drink alot of water before bed time. Drinking a little hot milk helps most of the time. It relaxes muscles. When I need more than that I take one Melatonin supplement a couple hours before bed time. Good luck and sweet dreams.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 06-14-2008, 06:51 PM   #15
juanita
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I used to take ambien till the insurance company decided I couldn't have it anymore. It worked everytime for me with no problems. I've tried tylenol pm and it makes my legs twitchy which is worse than not sleeping because it wakes me anyway. I have a new insurance so I'm going to try getting the ambien again. Being awake till 4 when you have to get up at 6 or 7 is a killer, but the same thing happens night after night. I do like to listen to books on tape when I can't sleep. Some of them have put me to sleep.
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st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 06-15-2008, 03:01 AM   #16
R.B.
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I do grind on about it like an old wheel but there are good reasons why long chain Omega 3 found in fish oil and balancing the Omega 3s and 6s may help with sleep as well as providing other health benefits.

These fats are fundamental to body function.

Have a look at some of these NIH videos if you need convincing.

http://www.omegasixthedevilsfat.com/resources.aspx

Please discuss dietary change with your doctor.
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Old 06-17-2008, 08:44 AM   #17
abitjaded
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Good luck Krista, the lack of sleep is my biggest on-going-bug-a-boo. There is just nothing more stressful.

Try shifting anything else you must take to a different time, if possible. If you are taking other things they may case wakefulness or sleepiness that may interfere with your circadian rhythms.

I have not tried Lunesta because Ambien does work for me. Ambien is now generic under the name Zolpidem. This may help with insurance. Ambien CR was the company's response to the loss in revenue when it went generic. The CR is coated and is long release. You can get 10 mg Zolpidem, cut them in half. Take 5 mg, then 5 mg later if you pop awake. Figure out how long it works for you.

Everyone's responses here show how differently we all react. It may take something different with each change of all the other gunk we have to take.

My Onc insisted that Temazepam (Restoril) was the drug of choice. Made me feel like I was hit by a Mac truck. Felt drugged the whole day after. Ativan helped with anxiety and sleep when I was first diagnosed, but was useless for me after a while. Benadryl was good for 24 hours of half-awake-half-asleep, but not good sleep or good awakening, and I had used it for years with success before BC. I do not believe there are any long term contraindications for the use of benadryl, unlike just about any prescription sleep-aid.

Melatonin does nothing for me, but some swear by it. Try dissolving it sublinguinal. Under tongue at back of mouth. Lots of blood supply there to absorb it.

I ended up paying a premium for Ambien at first because it worked. (Drug of choice for my ER Doc friend, who gave me some when I was melting down if my first months of dealing with BC.) It was worth the cost of $3 a pill. Now I can get 30 for $15!

Carla
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Old 06-17-2008, 08:20 PM   #18
trailrider
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Hi,
I have gotten some relief from insomnia by using
relaxation or sleep self hypnosis cd's. Check out Amazon, there are a lot of them. Good Luck
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Barbara

10/06 Invasive Ductal CA
ER + Her-2 +
Grade 3 Stage IIa, Neg Nodes
AC X 4, Taxol X 4
Lumpectomy , then Re-excision
Radiation X 33
Herceptin for 6 months, d/c due to
decreased ejection fraction
Tamoxifen 1 year now Femara
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Old 06-17-2008, 11:49 PM   #19
harrie
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Krista, I don't have any suggestions that was not already posted. But I just wanted to tell you that I love your picture. Your hairstyle frames your face beautifully!
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 06-19-2008, 01:46 PM   #20
kcherub
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Thanks!

Hi, everyone!

I haven't been on in a week or so, and I am still trying to come down from my Pearl Jam excursion on Monday! It was AMAZING! Of course, all the fun I had is keeping me from sleeping. LOL

Thanks for all the suggestions and the compliments on the new photo!

Tiptoe, Tex and The Chicken were back at my house when I got home--apparently, I should NOT be allowed to determine postage myself. Soooo, it's off to the PO again tomorrow!

Take care, everyone!
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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