Cholesterol and cll

[MonD]

I just received my fasting metabolic blood test results and my cholesterol continues to show marked improvement. It has gone from a very high of 300 several years ago to a "normal" of 175. I have read there may be some linkages although not explained between cholesterol and CLL. Has anyone else experienced this as their CLL progresses? I have made improvements in diet and exercise but still huge improvement...never took statins or other meds to control.

[Jonquiljo]

Never hear of a Cholesterol - CLL link. But diet and exercise can do a lot for cholesterol, especially the exercise. Depending on how much exercise then vs. now - yes - your cholesterol could make incredible changes. Mine did about 20 years ago.

[Louie_CC]

I also have seen my cholesterol reduced taking Ibrutinib but I also have an issue with my CK (Creatine Kinase) which is an enzyme that measures muscle breakdown. I was taking a statin and my CK elevated to 435 (normal range is 44-196). My Doc stopped the statin and CK went back down to the high range of normal. When I started Ibrutinib and added Venetoclax my cholesterol stayed in the 180-222 range without a statin but my CK has crept up to 680. My Oncologist and GP don’t seem to be concerned but I am worried.

Has anyone else had elevated CK while on Ibrutinib and/or Venetoclax?

[RZ8983DV]

It happened with me as well, but whether the reduction in cholesterol was due to exercise, diet or the CLL I'm not sure. I was diagnosed with high cholesterol in around 1996 and put on medication, first Lipitor and then Simvastatin. It is was on the switch over to Simvastatin in 2008 that it was noticed I had a high WBC and ALC and was diagnosed with CLL. The CLL has remained indolent since then WBC and ALC not increasing y that much but 2 years ago my cjolesterol was found to be normal and I was taken off th anti cholesterol medication

[Dyverg]

I'm 6 years into this diagnosis w/o treatment. This last blood draw saw an improvement in my blood counts but the worst I've ever seen in my cholesterol. In fact, My doc had threatened statins on the previous visit and I managed to raise it 50 points in the following six months. All diet, I'm sure of it. Begged for 6 more months to make a difference and have turned my diet upside down. Went whole food/plant based, no oil. Have lost 29 lbs and will be retested in Sept. Let's hope this does the trick! So I suspect your diet has been favorable to your cholesterol. Good job!

[virdieblue]

My cholesterol had been going up in the years before treatment. After I started Ibrutinib it dropped down noticeably. Never heard anyone explain the mechanism.

Virginia