Insomnia and anxiety after completing chemo

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

Insomnia and anxiety after completing chemo

Postby NZJay » Mon Sep 01, 2014 6:51 pm

Hi Guys / Gals,

I finished my adjuvant chemo two weeks ago and I'm pleased to report my energy has returned big time. I feel much more alive and the nausea has subsided.

New problems are extreme emotional swings and anxiety attacks. I feel like my emotions were repressed during treatment and now the mental strength I maintained seems to be replaced by this ball of regret and worry.

Plus insomnia. I go to bed at 10pm, wake at 12, 2, 4, 5 etc... and sooner or later I just don't sleep again.

Before chemo I was a regular 11-7 sleeper with good habits.

Could this be to do with stopping the anti-nausea medicines? Nozinan was a pretty heavy sedative. Or is this part of the normal "returning to life after chemo" experience?

This stuff is causing me to drop weight, which is kind of ironic as I'd expected to pile it back on upon completing treatment. :oops:

Just wondering if others have gone through the same thing.

Cheers.
Jay
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

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Insomnia and anxiety after completing chemo

Postby skypup » Mon Sep 01, 2014 6:59 pm

Hi Jay,
I love your dog!!!
For me, finishing chemo really threw me for a loop. After soldiering through all the treatment, I felt lost at sea without any help once the active fight had stopped. Quite a few others have mentioned this, too. It took a while, but eventually I found my footing again.
Insomnia is a huge problem for me with chemo, and for a good while after, and I never had sleep problems before. Sometimes I'd be awake all night, weary but unable to flip the sleep switch. I got used to using a light dose of Ambien every other night or so.
Congrats on finishing!

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Rob in PA
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Location: Pennsylvania

Re: Insomnia and anxiety after completing chemo

Postby Rob in PA » Mon Sep 01, 2014 8:07 pm

Hi Jay,
Don't know if you want to hear the drugs that are available or a natural remedy for your issues, but I'll tell you that Ambien did wonders for my sleep (I never used it in my life before, but after cancer I would just lie awake and worry). Also, for the emotional swings, I was put on 50mg of Zoloft to help curb that big swing of emotions...and it did.

Best to you.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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

Re: Insomnia and anxiety after completing chemo

Postby NZJay » Mon Sep 01, 2014 8:25 pm

Hi Skypup - the dog (Ghost) is a White German Shepherd. I picked him up when I started chemo and he has been fantastic company and a good motivation to go for walks every day. Can't beat em!

Sounds like you had the same kind of feelings as I'm going through, good to know it's normal at least.

Rob, yeah I am always keen to hear suggestions for things which may help me. I've left a message with my oncologist, will ask about ambien when they get back to me. I have never been inclined to taking pills but if it will keep me sane then I'm all for it.

Cheers
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

Ehut
Posts: 233
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Insomnia and anxiety after completing chemo

Postby Ehut » Mon Sep 01, 2014 8:48 pm

I also had some anxiety as chemo was finishing up since, as Skypup said, the fight was over and now I was on my own. I found some over the counter supplements that had some evidence of anti-cancer properties and started taking them shortly after chemo ended, which made me feel like I was still doing something to fight it. Even if they have no physical effect, there was a mental and emotional benefit.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
1/17: Added daughter to family!
12/19: Added son to family!
NED for 11+ years and counting!

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

Re: Insomnia and anxiety after completing chemo

Postby NZJay » Mon Sep 01, 2014 9:36 pm

Good point about feeling active in your own battle. I've made lifestyle and dietary changes to try and help myself, which definitely brings improvement. I probably feel the best each day near the end of my brisk hill walk with the dog.

But yeah with chemo there's that end date where I thought sweet, all my worries are over I'll just cruise back into my old life and rebuild my confidence etc. I guess the anxiety has come with the disappointment of finding it a lot harder than I expected.

Still, plenty to be thankful for. My daughter stayed with me this weekend and we had an awesome time. Time I may not have had if my cancer was not detected in time to treat it.

So fingers crossed the docs will find a nice medication to get me through this slump, as I feel incapable of doing it without help.
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

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Insomnia and anxiety after completing chemo

Postby Jachut » Tue Sep 02, 2014 3:02 am

Its like you are bulletproof during treatment, some inner strength buoys you up and keeps you going and then it evaporates when treatment finishes. I have at times been a real mess in the years since, I've never had anxiety or depression issues in my life before cancer but have at times had suicidal thoughts since. I've had lots of effects of radiation crop up, leading to huge anxiety over every niggle - not because I think its cancer but because I have always been completely healthy and now have trouble accepting that I need to live with a colostomy, or hip pain or whatever. I really struggle with menopause even though I'm now at a pretty average menopause age (47).

I think we can't spare the energy for all of this during treatment, but once that focus is gone, it all comes out. Hang in there, its tough but I think its part of the course of the disease - its not truly over until you begin to feel yourself emotionally and physically again and that can take a couple of years.

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

Re: Insomnia and anxiety after completing chemo

Postby NZJay » Wed Sep 03, 2014 4:21 pm

@Jachut,
That's absolutely right. I felt so determined during my pre-op, during surgical recovery, during chemo. Because I had a firm and measurable goal to work towards and I knew things would get better by a certain date.

Now I've finished chemo I just feel like I'm in a big confusing void, trying to return to work full time and rebuild a social life. I guess an identity crisis too as I was a big strong guy before cancer and 20kg lighter now, makes me really self conscious. Also just returning to work and being around people who seem so light and happy while I just sit there being chewed up by worry and fear.

As for the insomnia
I was prescribed Zopiclone, which gave me a very solid sleep two nights ago. However, it left me feeling washed out yesterday and when I tried to take my dog for a walk in the evening I had a massive dizzy / weakness attack. I had to go home and just lie there until it passed. I hadn't had this kind of thing since I finished chemo, and it made me miss my gym workout which really upset me.

So last night I tried using textbook insomnia tactics and ended up with a grand total of 2 hours sleep, feeling like rubbish today. I've left a message with my onc nurse and also made a GP appointment to see what other options may be available. As I feel the Zopiclone is far too brutal with the side effects.

I've also booked the next four days off work to try and focus on establishing a sleeping pattern.

It's crazy how I spent all this time being so excited about finishing chemo and returning to a healthy life with a good prognosis. Now I'm here I am just a wreck.
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

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Insomnia and anxiety after completing chemo

Postby peanut_8 » Wed Sep 03, 2014 5:09 pm

Jay, have you considered using melatonin for your insomnia? Some folks find it very effective. Ghost is quite a handsome boy.
cheers, peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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

Re: Insomnia and anxiety after completing chemo

Postby NZJay » Wed Sep 03, 2014 5:28 pm

Hey there,
Good suggestion, I will discuss this with the GP when I see him today.

My nurse a few minutes ago told me to resume using the Nozinan I was taking for nausea during chemo as it has a strong sedative effect. But that stuff had hideous side effects and I'm really keen to avoid it.

I'm "chemically sensitive" so pretty much any meds give me the worst possible side effects haha. Chemo was good times :lol:

Melatonin could be a good option.
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

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Insomnia and anxiety after completing chemo

Postby elise » Wed Sep 03, 2014 5:36 pm

yes, I finished chemo and wound up focusing on fitness and nutrition :D

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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

Re: Insomnia and anxiety after completing chemo

Postby NZJay » Wed Sep 03, 2014 5:50 pm

elise wrote:yes, I finished chemo and wound up focusing on fitness and nutrition :D

Elise


They're wonderful things, aren't they. I was extremely active and healthy (aside from the cancer ha!) before diagnosis. I continued working out during chemo and believe this helped keep me sane.
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

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: Insomnia and anxiety after completing chemo

Postby smudgesicle » Sat Sep 06, 2014 9:39 am

I took temazapan during chemo for steroid induced insomnia. I've kept it on hand for the last three months and I will use it a couple of times a week if I have trouble nodding off. It doesn't always keep me asleep but it's very good at getting me off in the first place and I don't seem to suffer any side effects when I use it occasionally. I believe it's called normison in nz. I think it's not dissimilar to zopiclone but you may find you tolerate it better. Side effects seem to be a very individual thing.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

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

Re: Insomnia and anxiety after completing chemo

Postby NZJay » Thu Sep 18, 2014 1:35 am

@smudgesicle, the doctors seem very loathe to prescribe me any benzos (aka the 'azepam drugs) as they say they're too addictive. I have a little stash of lorazepam which is awesome for bringing on a little nap, but I've nearly run out of it so use it only in extreme desperation.

UPDATE

Upon various advice, I used melatonin for the last week and a half, which worked well initially... until 3 nights ago when I developed stomach cramps and "sprint to toilet syndrome" during the night and first thing in the morning. Obviously this did not help me sleep and as a result I am back at square one.

I'm on day 4 of averaging about 3 hours sleep per night, and losing my mind fairly rapidly. In fact, since finishing chemo a month ago, I've only managed maybe 4 decent sleeps?

The doctor wants me on antidepressants, but I am not depressed. Zopiclone gives me incredible anxiety during the day and makes me all woozy. Nozinan is the devil's drug and this whole process is about weaning myself off it, not going back on!

I have stopped watching TV altogether. I walk my dog and do weights every night. I eat well and hydrate. I meditate. I avoid spending hours on the internet at night and have barely touched my beloved xbox one.

Where's my rant going? I have no idea. What I do know is my body has forgotten how to sleep and the doctors can't help me.

Watch this space as I rapidly descend into madness. ~out
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

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Insomnia and anxiety after completing chemo

Postby bitchslapped » Thu Sep 18, 2014 2:01 am

NZJay, Sometimes antidepressants are prescribed for sleep. I'm surprised your dr didn't mention that. Both my DH & DM were prescribed Trazadone (different docs, different medical conditions). Are you convinced the melatonin was the culprit, therefore don't want to give another try? Also if you are pumping iron in the evening that does not lend itself to falling asleep.

bs
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia


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