Having trouble staying awake during the day and blaming CLL? If you are overweight, a review of 42 studies "suggests that weight loss interventions improve daytime sleepiness, with a clear dose-response relationship" and "For overweight or obese adults, intentional weight loss is associated with improvement in daytime sleepiness, according to a review published in Obesity Reviews": psychiatryadvisor.com/news/...
So if you weigh more than you desire and are struggling to stay awake during the day, perhaps this incentive might help? When you achieve your desired weight and still struggle with sleepiness/fatigue, then your doctor has one less reason to discount CLL as the cause. Don't be fobbed off by statements that your lymphocyte count isn't high enough to be responsible for your fatigue - there's no correlation, which makes sense, given CLL cells in the blood are in their dormant state - a fact only determined fairly recently: healthunlocked.com/cllsuppo...
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Daytime sleepiness is a common symptom of sleep apnea. Obese and overweight adults are at increased risk for sleep apnea and can resolve with weight loss. Normal weight individuals can also have sleep apnea, and prior to any treatment for CLL due to fatigue, a sleep evaluation is usually considered. Sleep studies are usually covered by insurance in the US if the criteria of the Epworth Sleepiness Scale are met.
I went that route... finally was forced on to long term disability... it was mind numbing early on then over the years it improved a bit... Dr. Keating had a good theory on it... its a misplaced sick response, not fatigue in the true sense but ..more sick than tired. Cyctokines out of control... IL2 and IL6 as I recall.
Agree. I ended up on long term disability as well due to fatigue. I don't have sleep apnea and was told also that it was probably cytokines. The fact that my fatigue has improved now that my CBC is normal 7 weeks after beginning treatment with Venetoclax would suggest this is true
After perhaps my 4th round of FR, my fatigue lifted and has never returned in a post treatment setting... mind you I also dropped 120lbs prior to treatment, which certainly had an effect.
I'm currently doing 5th line Zydelig (idelalisib) and RITUX and fatigue is not an issue in the least...
Something got rewritten... fludarabine is good at that... 😜
Great news! I also lost a lot of weight prior to treatment. Like you said, I just felt sick and had a poor appetite. I looked gaunt. I have my appetite back now and put on 10 pounds since starting treatment.
This is an interesting and potentially circuitous discussion. I too lost weight prior to treatment (approx 60lbs) with diet and exercise but Ibrutinib treatment led to weight gain of about 22lbs over about 8 weeks. At a clinic visit I was saying that nothing seemed to be helping me to lose weight despite watching my diet and running 20k/week - I was surprised when he asked me how I was sleeping! I admitted that I wasn't a good sleeper, between 4 and 5 hours of broken sleep each night and often falling asleep in the day without being aware of it. He said poor sleep can affect weight loss (stress, increased cortisol) and they had had a few patients where, when they sorted out their sleep problems, they had lost weight. I'm waiting for my appointment to come through and hoping they can help me.
It seems poor sleep can cause weight gain and being overweight can cause sleep problems!
I suppose, looking back, that being unable to stay awake in the early evening was my first symptom - I'd drop off on the sofa anytime after 6pm - and put it down to old age and stress at work (it was a difficult period). Once diagnosed and treated, this didn't happen any more... though I am overweight and tend to sleep badly.
I too lost weight during W and W. Kind of a nice side affect. As soon as I started Imbruvica the weight came back. No change in diet or level of exercise, just more weight.
As for sleep...I have apnea but with use of CPAP I'm logging 7 to 8 hours of solid sleep every night and rarely nap or fall asleep in day time.
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Weight Loss with VenClexta
Weight Loss
Alterations of the immune system caused by CLL B‐cells 
Weight loss
