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Joined: May 2021

I was originally diagnosed in May 2020.  I received a chemo treatment then, based on what I was told (I was also suffering from hydrocephalus at the time.

After severa; MRIs, CAT scans, and PT scans, it appeared the cancer was gone.  Then, around September or October, my doctor sent me for one last set of scans to confirm cancer free.  Unfortunately, they did the exact opposite, it was back, and how.

So he ordered a dozen treatments.  Six methatrexate and six EPOCH.


Initially, I did have fatigue.  Like, easily out of breath.  I felt plenty strong enough to do things, but I didn't seem to have the energy or the breath.


That continued to around the half way mark, when it started noticeably hitting less and less and with less impact.


Then, as of about 2 sessions ago, a new thing hit.  Sleepiness.  Constant and random.  I get descent sleep at night, I even use a sleep tracker to verify that, but during the day I'll hit several times where I'll just suddenly start dozing off, hitting so hard that at times I didn't even feel it coming - just awake one second aqnd out the next.  When it hits, I'll go anywhere from 20 minutes to about 2 hours, and when I wake up, I feel fine...until the next one.  Fortunately, this only happens while I'm sitting, has never hit while standing or walking (knock on wood).


Anyone else out there experiencing anything like this?

po18guy's picture
Posts: 1223
Joined: Nov 2011

It is quite common. There are fatigue studies being conducted which seek some level of knowledge as to why this occurs. There are many theories, and in some cases, nutritional or therapeutic methods are used to address it, but for many it is the new (sleepy) normal.You might check with your cancer center to see if they have some studies or suggestions about dealing with it.

Posts: 329
Joined: Jul 2016

If I read you correctly, you've just had two harsh chemotherapy regimens, back-to-back. That, in and of itself, would be more than enough to explain having such a level of fatigue as to make you randomly fall asleep. I perfectly remember doing just that in my last couple of cycles of R-CHOP.

That being said, and considering that your initial fatigue seemed to improve over the course of treatment before this specific symptom appeared, your hematologist and other members of your medical team should be informed, as this could also be a neurological symptom linked to your CNS involvement.

Kind regards,


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