Steroid insomnia

[CarlaAnn]

Hi all, I completed 2nd cycle of cisplat/pemetrexed 10 days ago. Premed 10mg dex IV on chemo day then 8 mg daily x 2 days thereafter. Insomnia hits me hard, at a week post-chemo (I.e. Wake in bed at 2400, awake out of bed 0200 to 0400). Dr denies this is steroid related because it's delayed. I am not experiencing financial, relationship, family, work or health anxieties or concerns (other than this terrible insomnia). I am perf level 0, stage 3 NSCLC, very active, medical professional. Ambien, lorazepam, antihistamine, these help with sleep onset-- but I still awaken 2 hr later. The insomnia with the first cycle lasted 7 days then went away. I am hoping for the same this cycle. Anyone have comments? I don't believe stopping dex would be advised; as I am having some nausea still with this highly emetogenic regimen. I wonder if prednisone might be less problematic. Any advice or even empathy would be appreciated (since I sure feel I am not getting it from my medical team). 

Thank you

 

 

 

[Susan Cornett]

Hi CarlaAnn.  I was on the same chemo/steroid regimen that you are on.  My doc told me that insomnia might be a factor because of the steroids.  I don't recall having issues with insomnia, but I was also taking an anti-nausea med that knocked me out at night.  What some doctors fail to realize is that we all react differently to the chemo and ancillary drugs.  Hope your next chemo cycle goes more smoothly.

[CarlaAnn]

Thanks for your response skmcornett. I have taken compazine and Ativan simultaneously for nausea, never made me drowsy. I would love to be drowsy!! I am hoping the previous timetable continues and insomnia will cease in 1 or 2 days... I agree, everyone responds differently, it can be disheartening when the team doesn't support that notion. Four more cycles of chemo, then it will be done. I will certainly never take a good nights sleep for granted ever again.

[Tom Galli]

CarlaAnn,

Welcome to our forum.  I often spend early hours of the day (well before the sun shines) reading and responding because I also have insomnia.  However, I do not have a medical background but I have 13 years of experience.  So, let's breakdown your problem.

Like Susan, I experienced "roid rage" after each infusion.  My pre-infusion steroid was almost similar to yours and I was too wired to sleep for about 30 hours. But, I never experienced your symptom -- the long delay insomnia post infusion.  What might be the causes?

My doctors and I have spent countless hours trying to find a reliable and medically viable way to experience sleep.  My problem is painful peripheral neuropathy coupled with significant nerve damage in the plane of my thoracic incisions.  But, one topic we discussed that might have been an additive cause was stress.  I worked during my 18 infusions of post surgical chemo and continued working for 5 years after my treatment ended.  I had a very stressful job and chronic pain magnified the stress.  But stress alone is enough.

What might be causing your stress?  Well you are being treated for lung cancer and I found that to be the most stress I've ever experienced.  More stressful than combat because in combat one can take actions to enhance survival.  In lung cancer, nothing I did enhanced my survival and that helplessness induced my stress.  Now that I'm retired, the work related stress is gone but when other stressful events happen, my insomnia problem worsens.  So your symptoms may result from treatment stress, and or fear, more likely both.

Medications?  I've tried them all with results you report.  What do I use now?  Xanax.  I take 1 mg about 1/2 hour before bedtime and get relaxed enough to fall asleep.  Sometimes I need to add 1/2 a mg.  Sometimes Xanax doesn't work and I read or write.  Reading is preferred because it requires less concentration.  I don't watch TV or turn on lights.  I have about 6 good sleep nights (6 or more hours sleep) in every 10 days.  Of the 4 remaining days, I may get a couple of hours rest but about 2 days in 10, I don't sleep.  I've been in this pattern for about 13 years and it is not likely to change.

Think about your stress levels and have a conversation with your doctor.

Stay the course.

Tom