CLL America from Patient Power
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Venetoclax and Fatigue

I finished my 5 week ramp up on Venetoclax and the biggest issue is fatigue. I went shopping today for about an hour and had to leave the mall because I was exhausted. Started with back pain and an over all feeling of weakness. This started happening When reached 200mgs. Now on 400 and it is a chore to get thru the day. I'm still working and this has me worried because I no longer have the physical or mental energy needed for my job.

Anyone else dealing with fatigue from Venetoclax?

Renee

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Hi Renee,

My experience has been that whenever my body is having changes in blood level counts, exhaustion and physical discomfort occurs. I had expected to feel better as soon as my counts normalized but it took me about four to five months to build my endurance back up. Taking over the counter, B12 definitely helped me. I would let your doctor know your symptoms but have hope. I didn't even recognize my body having had forgotten what energy felt like. Wishing you the best.

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Jill, That makes sense. Thanks for sharing your experience. I guess I was expecting to feel better by now based on some other folks experience with Ven. I think my experience will be much like yours. I'm not sure what's happening in my body at this point. My recent blood work has not changed much. My WBC 3.0 and my Hemaglobin is 11.6 both low. So I have some anemia and I think the B12 is a great idea. I see Dr. Mato for my first follow up after the ramp up on Oct 20th and will be sure to ask how long till Ifeel myself again.

At least with Ven I know that at some point I will feel better and that gives me great hope! I hope you are doing well and I pray you have a long, long remission!

Renee

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I'm in the I + V trial. I've been on Ven since June and my fatigue is so bad sometimes I can't even get out of bed. It seems to happen after I do any type of physical activity. I did tell MDA in my last visit about my exhaustion and they lowered my Ven from 400 to 200. Still hasn't helped. I don't take B12 do think it would help?

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My doc won't consider lowering the dose. I may go for another opinion soon.

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Renee, I started my Venetoclax ramp up in February and experienced fatigue where I needed to rest every afternoon. I am now 7 months later and the fatigue is much less. I still am anemic with low white count but I am back at work . I think you will see an a improvement in your fatigue as your body adjusts to the drug.

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Hi Everyone:

Dr. Mato has agreed to lower Venetoclax from 400 to 300 mgs. last week. I don't know how long it takes for the change to affect my body, but I tried to get out to the mall again on Saturday and had to leave after about an hour due to fatigue, awful back pain and leg weakness. i'm barely making it thru the work day. I lost a lot of weight and muscle mass prior to treatment and wondering if the lack of muscle is part of the problem. I haven't gained any weight back yet. I see Dr. Mato this Friday. Hoping for answers.

Renee

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Hi Renee, I was down 30 lbs. when I started Venetoclax. I met with a dietician who told me I had to increase my calorie intake especially protein. No question the weight loss contributed to my fatigue. 7 month’s later I have gained back 20lbs. and fatigue is much better. Have hope that things will get better on this drug.

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