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Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

New here

Postby Stewsbetty » Sun Jul 17, 2016 6:53 pm

Hello all,

Was diagnosed with CC and had a resection about a month ago. Since then I have been having trouble sleeping. Previous to symptoms I would get about 7-8 hours of uninterrupted sleep each night. Now I am sleeping 5 hours max. I wake up and am awake for an hour or 2 before I can get back to a light sleep. Wondering if there is anyone else who has had this issue and any suggestions? I want to be as healthy as I can before I start chemo.

Thanks,
Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: New here

Postby macpudd » Sun Jul 17, 2016 8:10 pm

Hi Stewsbetty,
Sorry for the reason you find yourself here, I am almost twelve months out from chemo, and still have difficulty sleeping seven or eight hours continously, hence it is 2am here in Ireland as I type this, have had a few drinks (first since Xmas 2015) but am still wide awake. Like you I was previously a good sleeper, but since diagnosis I dont sleep as well, perhaps its anxiety, I really dont know, sometimes I feel like I have to make the most of every day and am disappointed that night time comes and its the end of another day. Anyway onwards and upwards, hope chemo is not to bad for you, keep tuned in to this forum, it is a great resource to have at our fingertips.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: New here

Postby midlifemom » Sun Jul 17, 2016 8:47 pm

Beth, I'm sure you will find several poor sleepers here.
In order to get even 5-6 hours I have to take ativan.
I also find one of the online meditations help.
I do gentle rain, 8 hours long, so when I wake up it helps to put me back to sleep quickly.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

Re: New here

Postby Buckeye » Sun Jul 17, 2016 10:50 pm

I don't like drugs to help me sleep . Eventually you will become dependent on them,so I take a melatonin pill before bed every night. It really helps me stay asleep and get a better quality sleep. It also doesn't leave you with that hung over dragging ass feeling the next morning. I take about 10mg about 30mins before bedtime. Hope this helps.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

User avatar
NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: New here

Postby NZJay » Sun Jul 17, 2016 11:04 pm

I struggled to get more than 3 hours per night when I finished chemo. Now a couple of years later I'm averaging maybe 6 hours and feel relatively functional.

Things which helped me:
Meditation / breathing techniques.
Blackout curtains.
Earplugs (big help).
Exercise.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

User avatar
H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: New here

Postby H is for Hawk » Mon Jul 18, 2016 12:25 am

My palliative care physician prescribed mirtazipine (Remeron) to me two years ago to help to fall asleep and stay there for most of the night. It works every night within a half hour of taking a 7 mg pill. The standard 15 mg pill is split in half by a pill splitter available at any drugstore. Mirtazipine is an anti depressant, but at the low dose, 7 mg, the side effects are drowsiness and improved hunger the next day. The doctor indicated it can be taken for many years. The only downside I noticed is some grogginess the next morning after getting up. It is a generic pharmaceutical, so it is inexpensive.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: New here

Postby AbbyDoo » Mon Jul 18, 2016 3:07 am

I'm not one for taking drugs but Benadryl might help you sleep. Maybe a good long walk in the evening would help.
Then there is always the icky sticky as snoop dog would say
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

User avatar
ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New here

Postby ANDRETEXAS » Mon Jul 18, 2016 12:34 pm

Hi Beth...

I would guess anxiety about starting chemo is a possible cause of you not sleeping. Once you start chemo, depending on which one, you should be getting some rest hopefully. I finished my chemo two years ago, and I am getting more sleep now than I did before chemo. I use to sleep six or so hours. Now, it's generally 8-10. I don't know if I should be happy about that or not. I just let my body decide. I walk 2-3 miles a day and try to eat as healthy as I can. Anything you can do to promote sleep naturally would be helpful. Andre P.S. When I was on chemo, I once slept 15 hours. It seems chemo has made my body want more rest. I may not be normal. :wink: Hang in there! Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: New here

Postby Stewsbetty » Tue Jul 19, 2016 12:27 pm

Thanks for all of the suggestions and support. My GP is very busy so it can be difficult to get in and i don't like to push. But I think I will try to make an appointment to talk about the sleeping and some other little things. My parents suggested trying gravel or benadryl as well and i might give that a shot. I was just thinking that maybe my body has gotten into a habit of less sleep due to pain/cramping at night before diagnosis. I was thinking a couple of nights of full sleep might help me get back to a longer rhythm. My dad suggested the sleeplessness might be due to get older as well. ;)

I did read in some other's experiences that chemo causes fatigue so I guess I might get caught up then. And amazingly, I am not feeling anxious about chemo. Not yet anyway. I am not much of a worrier over things I don't know and since I haven't seen the oncologist yet and have no idea what, where or when I am just enjoying my now pain free life as much as possible. I tend to be one of those last minute worriers. Will probably get anxious the first day of treatment or if I read too much about side effects once I know my tx.

Can melatonin be purchased without a prescription? Hesitant to do drugs unless it only for a couple of days. I have been trying to get exercise each day as possible and going to bed when first tired.

Thanks everyone.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

User avatar
ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New here

Postby ANDRETEXAS » Tue Jul 19, 2016 8:36 pm

Oh yes....Melatonin is sold over the counter. Walgreen's has it.
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: New here

Postby HopeForJesse » Tue Jul 19, 2016 10:21 pm

Just wanted to wish you luck with everything and second the recommendation on the value of meditation and/or recorded therapeutic music, etc.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

Nik Colon

Re: New here

Postby Nik Colon » Tue Jul 19, 2016 11:37 pm

ANDRETEXAS wrote:Hi Beth...

I would guess anxiety about starting chemo is a possible cause of you not sleeping. Once you start chemo, depending on which one, you should be getting some rest hopefully. I finished my chemo two years ago, and I am getting more sleep now than I did before chemo. I use to sleep six or so hours. Now, it's generally 8-10. I don't know if I should be happy about that or not. I just let my body decide. I walk 2-3 miles a day and try to eat as healthy as I can. Anything you can do to promote sleep naturally would be helpful. Andre P.S. When I was on chemo, I once slept 15 hours. It seems chemo has made my body want more rest. I may not be normal. :wink: Hang in there! Andre

I slept over 24 hrs b4!

Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

Re: New here

Postby Buckeye » Wed Jul 20, 2016 5:54 am

Yes melatonin is sold everywhere. I buy mine at Costco. Great value and good quality.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16


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