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Susanrae

fatigue with maintenance pemetrexed

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Good morning, I haven't posted for awhile.  

On 11/13/19 for my stage IV NSCLC (diagnosed 4/2019) I started the combo of pemetrexed and carboplatin and had 4 cycles of it every 3 weeks.  During this time I experienced fatigue the first 5 to 7 days (napping in the afternoons for 1 to 3 hours).  To make a long story short after this was completed, I had a CT scan and my oncologist said that overall my lungs looked better.  As of February 7, my oncologist switched me to pemetrexed maintenance only.  Since then I have been napping every day for 1 to 3 hours.  I do exercise regularly (walking 30 to 45 minutes 3 times a week, take Tai Chi Chih class Tuesdays for 1.5 hours, ride exercise bike twice a week for 30 minutes), keep up with shopping, housekeeping, cooking, etc. So do feel i am fairly active; but, I just can't stay awake during the day!!  At night I sleep well from 10 pm to 7 am.  Other than this fatigue, I am asymptomatic for which I am very thankful.

 I wanted to take a bus trip to New Orleans mid-March but don't feel I should go due to my fatigue; there are many tours planned in the afternoons.  Also, the coronavirus is getting to be a concern.

Has anyone else experienced this much fatigue with pemetrexed?

Thanks for listening,

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Feel free to whine about anything!  As far as travel, enjoy trips as much as you can and if you need to go rest in your room for a bit in the afternoon, that is perfectly reasonable.  A lot of people have to do that even if they aren't undergoing treatment!

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Nope not whining. Totally a real problem. I’m on a maintenance oral therapy where fatigue is the primary side effect.  It’s crazy to get what you think is a good nights sleep and then an hour after waking up feel tired. So frustrating! 

You’re doing all the right things!  I do get acupuncture which helps some but that gets expensive.  So lately I’ve started to be more mindful about how I do everything.  I created an energy diary short term, kind of like a food diary.  I  was surprised how quickly the “little things” added up.  For example, I looked for a more efficient route to acupuncture and saved 8 minutes round trip.  Doesn’t sound like much but here and there it all adds up.  

Driving is really more energy draining than you might think even if it’s short distances and familiar routes.  
 

Look to reduce any toxic energy wherever possible, learn to lower your standards and break things up into smaller tasks over the course of a few days.  I’m not as timely with things as I used to be and I’ve learned to be okay with it. Saying no is still something I’m working on.  
 

We all feel your pain, so try to prioritize activities and practice slowing down on others.  
 

You might want to sign up for “Cleaning for a Reason” free resource to ditch house cleaning chores too. 
Carry on. 
Michelle 

 

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Michelle, Thanks for your invaluable input; it is always nice to know one isn't alone.  I will definitely start thinking differently about energy use and what is really necessary and what is not.  Today was my last day to sign up for the trip to New Orleans and I took the plunge and am going!!  Really looking forward to it!  You take care now.  Thanks again for all of your tips and understanding, Susan Rae

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