going downhill

[Gogldn]

My husband has CLL dx in 2013. Ok until this last year. Now has gone downhill. He is not to computer friendly so I am doing this. He was started on VENETOCLAX and is on week 3 of the ramping up. Extremely fatigued. Poor appetite. Sleeps a lot. The doc thinks this is a combo of the CLL and the s/e of the med. I just hope that he adjusts to the med. Anyone out there who has had a difficult time with adjusting to the med? He is 79 and has lost abt 24 lbs. in the last 2 months. Would love to hear from you all. Thank you

Jackie

[gardening-girl]

Hello Jackie and welcome to the group! While waiting to hear from others with experience with Venetoclax, it would be helpful for you to give us a little background on your husband's prior treatment, and the conditions that led to his current treatment. Was he experiencing any of the symptoms that you describe above prior to starting Venetoclax? It might be helpful as well to say something about where you are located and whether your husband is enrolled in a clinical trial.

Please be patient, I am confident that you will hear from others on the list who have direct experience with Venetoclax.

gardening-girl

[Gogldn in reply to gardening-girl]

Thank you very much and I did complete the profile. So hopefully this will give a picture of my husband

[winterwild]

Hello Jackie,

I had a few hiccups when I first started Venetoclax. I remained on the same dose until my bloods improved, which was about a week longer, a couple of times before the next ramp up. I hope your husband picks up and can remain on Venetoclax.

WW

[Gogldn in reply to winterwild]

I do too. I filled in the profile so hopefully this will help with the total picture of my husband. He has been on VENETOCLAX for 3 wks. And honestly there is no difference he continues with the ext fatigue, no pain. Maybe we are expecting too much too soon?

Thanks, Jackie

[lankisterguy Volunteer]

Hi Gogldn,

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I agree with gardening-girl , we could help much more if you provide much more background info. The best way would be to insert this info into your profile. You can find that by clicking on your round icon in the far upper right corner of this screen. The first item on the drop down menu is "Profile" on that page you will find a white box "Edit Profile" in the right upper side.

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If you view my profile,

healthunlocked.com/user/lan...

you will see that I have been on Venetoclax since 2016. I was fortunate that I had very fast improvements when I started Venetoclax, others have seen slower recovery of their bone marrow that takes a few months.

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Len