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Sleepless Nights

k8's picture
k8
Posts: 29
Joined: Oct 2018

Husband diagnosed with rectal cancer 8.1.18 after colonoscopy which he had due to bleeding in his rectum. Treatment was radiation and chemo. Surgery 1.17.19; removed rectum, has temporary ileostomy. After surgery doctor stated they were able to get all of the cancer and it did not go into his other organs or seminal vessels (Not sure if I spelled that one right). Since beginning mop up chemo which is much different than first round my husband says his hands are cold, muscles in the neck and shoulders hurt and he has trouble sleeping. He has only had the first treatment of Adrucil, Leucovorin, Eloxatin. I realize others have had this same regimen of medication and wondered if others had trouble sleeping and what you were able to do to help sleep better. Any and all advice would be appreciated.

I have been reading most of your experiences on this site since my husband first started this journey and my heart goes out to all of you, husbands, wives, children, family members and especially to the spouses that are caregivers such as myself. This has been a difficult journey for us. We stopped living and now we are just surviving.

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

k8:

My situation was very similar to your husband's in terms of disease and treatment - to a point.  I only did three sessions of adjuvant chemo for a couple of reasons.  One, it was so devasting to my health.  Two, just like your husband, my cancer had not spread and the surgeon stated that he got it all (confirmed by biopsy).  Consequently, I decided to stop the chemo and let nature take its course.

When I was undergoing the adjuvant chemo I still had an ileostomy and that chemo turned it up to high.  It was filling up so often through the night that I either had to get up to empty it or I could not sleep due to concern that it would fill and leak.  In addition, my sleeping position was altered since I could not lay on my right side.  To compensate, I would sleep in the bed in a sitting position, and when I say sleeping it was more like napping.  If I could get two hours of continuous sleep then I was happy.

This disease is insidious and never seems to stop affecting the individual - and the family.  Your words..."We stopped living and now we are just surviving" are descriptive of a phase of CRC.  Each event, each day you will adjust.  That does not mean that you will like it, only that you will adapt and overcome.

Once both of you can put the chemo behind you, and perhaps reverse the ileostomy, then you will gradually move into the new normal.  There are not-so-good days (leaking ileostomy or uncontrolled bowel movement) but, believe it or not, you will take it in stride.  I have found that the rest of the world does not care if I must cancel or alter plans due to my condition.  My standards were affecting me more than those of others.

It sucks.  What's the alternative?  As difficult as it has been for me, I have finally accepted the fact that I must grow where I am planted, and survive under the local conditions.

Jim

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I usually do not have sleep issues and when I do they're more related to my frame of mind than to medications or treatments. I have sleeping pills I take when I need them. They work well but leave a bad taste in my mouth even the next morning for some time. They're called Zopiclone but could have a slightly different name if you're not in Canada. I've been in the hospital so many times that I can sleep through all kinds of noise that I never could have before so I generally get a good night's sleep.

Sorry, I'm not much help.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

Sorry to hear that hubby is having sleepless nights.  I'm not familiar with the treatment that he is getting as I've not heard of the two drugs besides the Leucovorin that was in my FOLFOX.  You can have him ask the doctor for a sleeping pill which helped me but was sometimes still awake at night. You and hubby came to my mind the other day and remembered that he was starting his treatment the beginning of March.  It's hard but if you talk to your doctor about everything and ask questions here, you should get some really good responses.  Hope he gets some good sleep soon.  Wishing him well. 

Kim

myAZmountain
Posts: 270
Joined: Apr 2018

My chemo was Folfox with Avastin, however on infusion day I also got Emend, Magnesium, Benadryl, and Decadron just to name a few....I don;t know if that is a standard protocol but the Decadron (steroid) most definitely kept me up the first night, the Benadryl wore off I guess because it zonked me for the initial infusion. I wish I had not gotten the steroid, am paying for it now with alot of joint pain. Does he get any additional meds like these?

k8's picture
k8
Posts: 29
Joined: Oct 2018

Other Meds they are giving him are dexamethasone 10 mg, zofran. He was given a steroid which worked really well until it wore off on the second day after treatment. His New regimen is FOLFOX D1 D3 every 2 weeks for 9 treatments given through Port/Pump. He is also taking oxycodone for pain but I don't think it really helps. So far he says he lost a little bit of hair after first treatment (luckily he has a head of thick hair LOL). Has lost a good 20 pounds due to change in diet of course.

Kate

 

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

I did Folfox and I don't remember it keeping me up, but from diagnosis, the doc asked if I wanted to try a Xanax prescription, and I figured "why not". The 3am "wake up and worry's" were bad enough. It worked well as an occassional aid, and made treatments and appointments easier as well. People have abused it, but that problem didn't happen to me, and it did make sleep and hospital stuff easier. Benedryl helped as well for sleep, as a way to alternate the other. Hope you find what helps......................................Dave

k8's picture
k8
Posts: 29
Joined: Oct 2018

Hi Dave, How did the Xanax help you? Did it help you to relax? Hadn't thought about Benedryl.

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

Yes, it took the peak of anxiety away, and I found it effective for wide-eyed wake ups, and right before doctors/oncs/procedures/appointments, times when I needed to be at my calmest. I never let it become a daily thing, because I'd heard the tales and because I knew it would become less effective if used like that.....................................................Dave

lhduffer
Posts: 72
Joined: Oct 2015

I also received a prescription for Xanax from my oncologist.  It was for anxiety during treatment, which I didn't use it during the day.  However, I did use it at night and it did help me return to sleep quickly when I woke up during the night with too much on my mind.  Without it my mind would run wild and sometimes still does when it's time for a scan.  Like Dave, I used it only when necessary and it never became a problem for me.

The benadryl sounds like a great idea as well.

Woodytele
Posts: 163
Joined: Apr 2017

Marijuana, Benedryl, Lorazapam, Melatonin pills, Advil with sleep aid.   It can be so frustrating not getting any sleep.  Ambien didn’t do much for me. 

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

I'm hoping that you don't take all those at once.  Lorazapam I'll use only if anxiety kicks in but it doesn't really make me enough to fall asleep.  Don't do marijuana but ambien does work for me so I'm fortunate.  It's hard when you can't fall asleep though.  I've been having problem with it since my diagnosis back in 08 and still dealing with it.  Glad that you can find things to help you.

Kim

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