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Old 01-28-2014, 12:16 PM   #1
waterdreamer
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Sleep and cancer

We all know how important sleep is, and very often the pain of bone mets and other aches and pains make that hard. I take 3 - 6mg of melatonin before I go to bed to try and ensure I get a good nights sleep.
This article is very interesting:
http://www.huffingtonpost.com/2014/0...tml?ref=topbar
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 01-28-2014, 05:07 PM   #2
Andrea Barnett Budin
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Re: Sleep and cancer

I've read numerous studies that show that a good nights sleep helps repair and regenerate our bodies. T cells dip, indicating depressed immune systems and depression... I have felt for many years that it is my duty to get a good night's sleep, in order to heal. That's our job, right?

Thank you for posting this for all to see, Waterdreamer...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-28-2014, 09:46 PM   #3
BonnieR
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Re: Sleep and cancer

Ah, elusive sleep! You ladies are so right about its importance. And when newly diagnosed and in treatment it can be hard to come by. I have come to rely upon Ativan nightly. Would rather not, but enough sleepless nights have convinced me that it's necessary and does the trick without any morning after effects
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 01-29-2014, 05:26 PM   #4
tricia keegan
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Re: Sleep and cancer

I don't sleep well since my cancer treatments and have thought about taking Melatonin and think this post has made up my mind and hope it helps!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 02-02-2014, 05:33 AM   #5
KsGal
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Re: Sleep and cancer

I haven't tried melatonin yet. I'm glad to hear it is working so well for you! Like Andi, I believe that when you are sleeping is when your body is healing, recharging and repairing itself. My doctor also told me that when you are tired your pain tolerance is lower i.e. you hurt more. I was dead set against using any narcotics or anything similar when I was diagnosed. I don't know why considering I was taking chemotherapy, which is far more damaging to your body. But at any rate, over the last couple years I have changed my tune. I refuse to suffer any more than I have to. So like Bonnie I take Ativan and get a good nights sleep without dragging in the morning. And if I am in pain, I take a vicodin. But since you are having such good results, I might just give that melatonin a try and see how it does for me.
Jody
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED

Last edited by KsGal; 02-02-2014 at 05:35 AM.. Reason: crappy typing skills..lol
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Old 02-03-2014, 04:13 AM   #6
Aussie Girl
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Re: Sleep and cancer

Sleeping is a big problem for me. I've had problems for many years, but the cancer therapy and the onset of menopause with hot flushes are driving me to distraction.

Mostly I get 4 hours sleep a night and I consider anything more than that a real blessing. Lately it has been less than that and I am not coping very well.

I've tried to set up a good sleeping place (away from my husband's snoring). Coal trains go down our valley hourly (squealing brakes and low vibrations for 10 to 15 minutes each time). I'm sleeping in the most insulated room, but I still hear them. The rest of the family don't even notice them. D@#% the coal seam gas boom in our region!

The worst though is the hot flashes. Variable but often 4 per hour at night, each lasting about 3 to 5 minutes. They occur during the day, but don't disturb me so much.

I am severely lactose intolerant and all of the benzodiazepine drugs (eg. Ativan) contain lactose. I take a Temazepam (mild hypnotic) with lacteeze tablets once a week but still get diarrhea from this - often in the middle of the night. Melatonin tablets usually have lactose and I believe are usually bought online from overseas by Australia customers because the only type available here on prescription is very expensive. I feel like I can't win on this problem.

I've been trying deep meditative breathing etc. I helps me to get me to sleep for the first few hours, but not when I wake with the flashes. I have tried a herbal supplement, without much effect (other than heartburn). Exercising during the day makes me feel better, but without much impact on the sleep.

I am going to my general practitioner next week. She has suggested, in the past, taking a low dose antidepressant (eg. citalopram or mirtazapine) to help with sleep and possibly the flashes. I am trying to track down lactose free versions (oral solutions and orodispersable tablets are theoretically available from my research.)

I wondered if any of you have tried an antidepressant for sleep/ hot flashes. I am a bit reluctant to meddle with my brain chemistry, but I need to sleep to manage going back to work in my laboratory.

In the past, I could work 12 hours a day, while sleeping 4 to 6 hours a night. I could work even if I had no sleep for a night. Now I don't that capability anymore.

Wish me sweet dreams tonight!

Aussie Girl
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31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 02-03-2014, 10:58 PM   #7
Pamelamary
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Re: Sleep and cancer

I have definitely heard of some use of an anti-depressant for hot flushes, so worth following up. I also have sleep problems and to some extent, have just given up and take zopiclone every second or third night.
Listening to music is too engrossing, but my digital radio is a boon. As an Aussie, you would appreciate that ABC overnight talkback can bore you to sleep. It effectively stops the mind going in circles, which certainly screws up my nights.
Sweet dreams indeed..... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 02-04-2014, 05:09 PM   #8
Bellaokc
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Re: Sleep and cancer

Aussie Girl, have you looked into Effexor? It helped some with my hotflashes. I still have to take either Temazepam or Ativan to get to sleep right now, but I am healing from surgery and HAVE to sleep.
The Temazepam got me through chemo nights when the Decadron steroid would not let me rest.

I too was on NO meds before starting the chemo and finally gave in when I realized how much I was suffering by not taking something for the anxiety and insomnia.
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Norma,

June 7, 2013: Age 43, mother of 2, had just celebrated 16th wedding anniversary June 6th
Dx Invasive Ductal Carcinoma:
ER-, PR-, HER2+++,
Stage IIb, 5 cm. tumor, grade 3
Benign lymph nodes.
June 26, 2013: Begin 4 Rounds of AC
Sept 19, 2013: Begin 12 weekly treatments of Taxol/Herceptin
Oct 22, 2013: Skipped a treatment because of a trip to the ER. Turned out to be a blood clot in the inferior vena cava….Started Coumadin (aka Warfarin)
Dec 12, 2013: Last treatment of TH
Dec 20, 2013: CAT scan and nuclear bone scans show NED. Yay! Chemo worked!
Jan 24, 2014: Bilateral mx w/expanders inserted; 10 Lymph Nodes removed on left side;Pathology report shows no trace of tumor was left after the chemo. More proof that the chemo worked!
Jan 30, 2014: Emergency surgery due to hematoma on the right side. Had a filter inserted to deal with blood clot that had developed in October.
Feb 2014: Begin Herceptin only treatments
Aug 29, 2014 Expanders OUT and implants IN
Sept 4, 2014 Last Herceptin treatment YAY!!
Oct 8, 2014 Port Removed
Dec 5, 2014 Nipple Reconstruction

Current Meds: Daily - 150 mg Effexor; 50 mg Tramadol for aches and pains caused by treatments
Occasional - 30mg Temazepam (Restoril) for insomnia ; 300mg Neurontin for nerve pain in left arm; 1 mg Lorazepam (Ativan) for anxiety;
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Old 02-04-2014, 07:44 PM   #9
Kkmom
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Re: Sleep and cancer

I have been using effexor xr for the past 6 years. It was prescribed to me by my GYN after going to him for severe insomia and hot flashes. It was a godsend. Prior to using effexor, I would wake up every night at 3:30 on the dot and not go back to sleep - it was a vicious cycle, which made it hard to function. The effexor changed everything.
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[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 10 Years Out!! - December, 2022
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Old 02-05-2014, 12:25 AM   #10
Aussie Girl
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Re: Sleep and cancer

I've been talking with my sister who is a doctor and she's suggested Mirtazapine wafers which are lactose free and have a hypnotic effect as well as being an antidepressant. They are available from my local pharmacy.

My main aim is to be able to sleep through the flashes. There is one lactose free brand of venlafaxine XR (same as effexor xr) and I will try to get that if the mirtazapine isn't enough to help me cope. I want to have the least amount I need. Zopiclone has lactose unfortunately.

Venlafaxine is supposed to reduce flashes in about 50% of women. Estrogen helps 85% or more women.

Thanks for your help

Aussie Girl

__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 02-05-2014, 09:18 AM   #11
Bellaokc
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Posts: 51
Re: Sleep and cancer

Kkmom,
Can you tell me the dosage of your Effexor? I am on 37.5 mg and am thinking maybe it needs to be raised so I can drop the other meds.

Aussie Girl...let us know how the Mirtazapine wafers work.

thanks!
__________________
Norma,

June 7, 2013: Age 43, mother of 2, had just celebrated 16th wedding anniversary June 6th
Dx Invasive Ductal Carcinoma:
ER-, PR-, HER2+++,
Stage IIb, 5 cm. tumor, grade 3
Benign lymph nodes.
June 26, 2013: Begin 4 Rounds of AC
Sept 19, 2013: Begin 12 weekly treatments of Taxol/Herceptin
Oct 22, 2013: Skipped a treatment because of a trip to the ER. Turned out to be a blood clot in the inferior vena cava….Started Coumadin (aka Warfarin)
Dec 12, 2013: Last treatment of TH
Dec 20, 2013: CAT scan and nuclear bone scans show NED. Yay! Chemo worked!
Jan 24, 2014: Bilateral mx w/expanders inserted; 10 Lymph Nodes removed on left side;Pathology report shows no trace of tumor was left after the chemo. More proof that the chemo worked!
Jan 30, 2014: Emergency surgery due to hematoma on the right side. Had a filter inserted to deal with blood clot that had developed in October.
Feb 2014: Begin Herceptin only treatments
Aug 29, 2014 Expanders OUT and implants IN
Sept 4, 2014 Last Herceptin treatment YAY!!
Oct 8, 2014 Port Removed
Dec 5, 2014 Nipple Reconstruction

Current Meds: Daily - 150 mg Effexor; 50 mg Tramadol for aches and pains caused by treatments
Occasional - 30mg Temazepam (Restoril) for insomnia ; 300mg Neurontin for nerve pain in left arm; 1 mg Lorazepam (Ativan) for anxiety;
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Old 02-06-2014, 05:03 PM   #12
Andrea Barnett Budin
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Re: Sleep and cancer

For me the Effexor had no effect on my constant clammy wetness, feeling that I was trapped inside something. And it made me feel weird.

So, slowly, slowly, after begging to be taken off, I weaned off.

Evening Primrose helped during the day. Ativan helped during the night. Actually Ativan was excellent for hot flashes but can't take it by day.

My fav onc since 1995 told me way back, when I resisted taking pills as I never even took aspirin -- YOU SHOULDN'T HAVE TO SUFFER. THAT'S WHY WE HAVE THESE PILLS. TO HELP YOU. AT THE FIRST SIGN OF PAIN, NAUSEA, WHATEVER -- TAKE A PILL. He's basically very conservative, though aggressive when necessary, always reasoned and caring. I offer that advice to all of you.

I find watching a movie, the more boring the better, I start to fall asleep.

I do add Theanine (natural supplement, calmative) to help stop the non-stop thoughts pounding inside my skull. And melatonin.

I would be walking the hallways in my house till 5 AM if not for help. And that is not good, for my body (it needs to regenerate and rejuvenate). I read a study on nurses who worked the night shift. Their T cells were way lower than the other nurses'. Their immune system was compromised. That's the last thing any of us wants, right?!
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-06-2014, 11:51 PM   #13
Deltadiva
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Posts: 44
Re: Sleep and cancer

I agree wholeheartedly, we need to be willing to help our poor bodies heal, maybe in ways we would never do otherwise. While I've long played stupid games on my tablet to get sleepy, I've had to add a Xanax (alprazolam) on some nights. It's nominally for anxiety (which I wouldn't normally admit to) it slows my overactive mind when it's late and I can't sleep.
__________________

First occurrence: found lump in my left breast in 2002. 1.4 cm Stage I Grade I Node neg ER+ PR+ HER2 neg (didn't even know what HER2 meant). Lumpectomy, radiation, 5 years Arimedex.
Second occurrence: Oct. 2013 I found a lump in my right breast 3 months after a clear mammo.
1.5 IDC Stage I, node neg, Grade III.
Lumpectomy in November.
First path report ER+ 10% PR- HER2 neg. two margins not clear. Sample sent for Oncotype Dx test. After much delay and confusion, it turned out there are two cell lines. The ER+ tissue has an RS score of 37. The second cell type is ER-PR- HER2 +++. This double tissue type has only been found by the Oncotype lab 3 times for the entire US since they started doing the test. I'd like to be unique some other way!
October 2013 double mastectomy without reconstruction.
Treatment plan: 6 infusions of TCH then the rest of the year Herceptin, and Arimidex forever. After all this, my chance of dying from cancer in the next 10 years is probably less than dying from something else!
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Old 02-07-2014, 10:23 AM   #14
Andrea Barnett Budin
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Re: Sleep and cancer

Right on, Delta! I do not feel anxious, as you say, per se. I just have a
hyperactive brainstorm going on in my head at every waking moment.

I have learned even if it is a matter of thinking what I will wear tomorrow or how I could give new life to a room in the house -- DO NOT GO THERE. Stirring creative juices is verbotin!

So, I like to think I talk calmatives, to slowdown the battering ideas banging around in my head.

I meditate every day. Have since '95. But at night, I cannot get that going. Stray thoughts keep popping up. By day, I can zone out and go to my favorite fantasy spot (once actually visited and found to be totally awesome). I recall the sights, sounds, feelings that I experienced (over 50 years ago!) and come back feeling refreshed, joyful and serene.

Just can't seem to master that at night. So, I admit it, I need help. Or I wouldn't have slept a single night since 1998...
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-10-2014, 04:26 PM   #15
LeahM
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Posts: 395
Re: Sleep and cancer

After diagnosis and during treatment and until the end of Herceptin in June 2013 I relied heavily on Ativan. When I didn't have any refills left I weaned myself off and switched to Tyl PM to help me sleep. Aware that too much Tyl isn't good for my liver, especially since I like an alcoholic beverage or two I picked up a bottle of Melatonin 5mg and have been sleeping soundly and waking refreshed ever since. And according to the below link I am doing the right thing! Thanks Europa for sharing this on FB!
http://www.sibley.org/news/default.aspx?ArticleId=414
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 02-10-2014, 04:59 PM   #16
Andrea Barnett Budin
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Re: Sleep and cancer

Thanks for that, Leah! Very interesting!
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-17-2014, 05:20 AM   #17
Aussie Girl
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Posts: 260
Re: Sleep and cancer

Update on mirtazapine orodispersable tablets for sleep....

They taste like lemon sherbet dissolving on your tongue (definitely need to be hidden from little kids). Very potent. The med is available in 15mg and 30mg tablets. I take 7.5mg (1/2 of 15mg tablets) and it sends me to sleep in less than 15 minutes. I wake up sometimes in the night, but still drowsy and calm and fall back to sleep.

Hard to get up a 6 in the morning, and there is a certain calmness through the day. After effects are reducing on subsequent days. A quarter tablet didn't quite work. I'm trying to cut the rather crumbly tablets in to thirds which may be the ideal dose for me.

Overall, seems to be a good choice as supposed not to be as addictive as a benzodiazepine (like lorazepam). Good if you don't have to be up early and would be good if you also had some anxiety symptoms. I felt a little flat, but peaceful rather than depressed. I just didn't feel as hyperactive as I usually do, which might be a good thing.

Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 02-17-2014, 01:01 PM   #18
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: Sleep and cancer

Aussie, Does it increase your appetite??? I've been reading.

Also, if you stop, you should wean slowly...

Avoid alcohol...

Good luck. Sleep well.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-18-2014, 03:33 AM   #19
Aussie Girl
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Join Date: Jul 2013
Posts: 260
Re: Sleep and cancer

I haven't noticed an increase in appetite, but I've only had it a few days so far.

I drink very little alcohol and probably have only had two small sips of alcohol since I was diagnosed. I am what in Australia is referred to as a Cadbury's drinker - a glass and a half and I'll be under the table. That will be cryptic for the Americans but I'll leave you to work it out.

Because I'm taking such a low dose, I don't have to worry about withdrawal effects and can take the drug intermittently. I'd have to be careful if the dose was higher.

I remember when my mother-in-law had to slowly withdraw from one antidepressant before starting another one over a six week period. It was six weeks of hell because she became so depressed and not like her usual beautiful self. She has had severe pain from arthritis for years and is my role model for living with grace despite adversity.

Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 02-19-2014, 02:16 PM   #20
linzi
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Join Date: Feb 2014
Location: NJ
Posts: 38
Re: Sleep and cancer

Hi, ladies:
It looks like the "sleepless club" :-) and I belong here too :-( I've always had some sleeping problem here and there and need to take some herbs or tylenol PM sometimes. The menopause about a year ago made so much worse and now with the chemo/steroid, I have to take Avitan, but worries about its long term use. In addition to that, my left ear also "hears" a wooshing heartbeat sound, especially at night, very annoying and it makes it even harder to go to sleep. Anyone has tips to deal with it? Thanks. Wish everyone sweet dreams at night.
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DX 12/24/13, IDC, 1.7cm, stage 1, grade 2, node 0/6, ER-/PR-/Her2+++
1/6/14 Right side mastectomy
2/10/14 start TCH
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